Archive for the 'life' Category

Setting Other Things In Motion

I had mentioned the wheelchair I would need to order.  Not knowing how I would go about it via the VA…and since I had assumed (wrongly, of course) that in awarding him compensation for my husband’s disability would  be what I’d use to purchase any and all equipment for him, I sought advice from the centre with regards to fitting him for a suitable wheelchair for which we paid.  When I had the appointment with a counsellor from the VA who explained much to me then left the VA Handbook…which went on to explain a great deal more.  He explained the award and other benefits to which Fred would be entitled.  I asked about a bathroom addition…he asked why stop there.  I could have a room with bathroom suite added on for which the VA would pay;  transportation…I could, if I wished, look into getting a van and having it adapted for transporting Fred in his wheelchair.  Almost anything he required or would assist in his care could be applied for though not necessarily granted.  He also made it clear that any application had to be for my husband’s needs or use and this also, stringently, applied to how the pension they awarded him was to be spent.  This “is not for you…it’s for him”.  Additionally, every year an accounting of every penny spent must be submitted to the VA.  That would make two…the court required a total accounting of everything coming into the household in Fred’s name.  With me not working that was everything…insurance, social security and the VA pension.  I’m a fairly literal person in many ways…that and always needing to make sure all the I’s are dotted and t’s crossed…so I did have to ask “What if the roof needs fixed, redecorating is needed, the carpeting needs replacing?”  Might sound a bit redundant but I truly was very aware and wary of doing something wrong, that would cause any of those entitities to halt their financial obligations or, worse, remove Fred from our home.  It was made clear that all of those things were still considered to be for my husband’s well-being, needs and comfort so…no problem.  But I can tell you that each of the following four years’ accounting, I was meticulous to the penny and my own expenditures (I discovered that a total of $400 a month of his pension was for my own personal purpose) amounted to what I would spend on clothing, personal hygiene, the odd magazine or book, my own life insurance, dogs needs and occasional CD and food…my food since Fred did not eat.   And not that I needed to, but I sweated bullets every one of those years.  I did my own accounting and incoming/outgoing matched to the last cent.

So…we had ordered the wheelchair, now we just waited.  Meantime, “a day in the life…”, which would be most days.  I’d be up at six to have my coffee and a few minutes before getting into the day.  Fred actually slept very well, despite being disturbed every two hours so I would leave him sleep until eight.  Shaving came first.  I had to laugh…it paid off me, as a child, enjoying watching my Dad shave…making a clean, rasping swathe through the white foam.  The first day I shaved Fred I was afraid he’d have a heart attack when he saw me approach with the razor and his eyes popped.  Initially, he rebelled the only way he could…rolled his head from side to side as if saying no.  But I knew, while he’d grown a beard twice in his life, he didn’t like them so I just told him that would be his future.  Didn’t know if it would mean anything to him, now, but I had to try.  Finally, he stopped fighting me and success ruled…clean shaven, no nicks!  Next came the bed-bath.  One thing…I did get some walking done, going from one side of the bed to the other.  While on his back, I’d lather and rinse his front, head to toe, then I’d place a pillow on his left side, back around to his right side so I could roll him up over to the left.  Bathe the right side of his back, head to toe and repeat this maneuvre on his left side.  Dressing him required the same maneuvres and though I did attempt to get him into regular slacks and shirts I soon found why sweats were recommended.  The pants easier to pull up.  While he was on his back, I could get the pants up to mid-thigh with only one trip either side of the bed.  From there it took three each side just to make sure they were up to the waist, not bunched, no seams in the wrong place.   He had fairly good range of motion but not being able to help twist or bend elbows or arms, getting a regular shirt on was a struggle.  The sweat shirt went over his head, arms up and through each sleeve, quick roll in either direction and we were good to go.  Probably should mention that “quick roll in either direction” didn’t happen the first day…or the first week.  It took practice…and patience, the latter with myself!  Before the last…socks and shoes….we did range of motion exercises.  And THEN…he seemed closer to the bottom of the bed than the top so needed to pull him up.  First time I tried just as I had in the rehab centre but it went no better this time than last.  Behind Fred’s bed was the family room window, in front of which was a wall-wall window seat…so I stood on it…only to find I had to bend too far forward and slipped off the window seat.  Only one thing for it…I laid the bed flat for a few seconds (hopefully!) climbed on the bed and straddled his head, squatted with palms under his arms, gripped and pulled.  It worked!!  So well…that first time…that his head hit the headboard.  For that I flagellated the hair shirt I wore the rest of the day.  Never mind…I wouldn’t make that mistake again and at we had conquered a major problem.

That done, brush his hair, tried to brush his teeth…little success there but we’d keep trying.  Time to ‘eat’.  Clean and check the PEG, feeding tube, fill with his liquid nutrition and set the pump in motion…a very, very slow drip.  Check his BP and temp…give him meds.  He had thirteen he was taking…for seizure control, BP, three different meds to stimulate the brain, reflux.  They were pulverized to be mixed with water then syringed into the PEG access.  They had said it didn’t matter if he had his meds before or during the tube feeding so I opted to let the PEG do it’s job for about an hour, detach the feeding the tube then squirt his meds through the valve input.  I’m not sure if it made any difference, I just felt that he…like the rest of us…would absorb the meds better when not on an empty stomach.  Fred’s person taken care of, time to get him up in the lift-recliner.  It was a little nerve-wracking the first few times, knowing he was connected to the feeding tube.  How would I know whether it pulled, pinched, if it happened to tangle even the slightest bit, did he feel it and did it hurt?  All I could do was try to watch his face, expression…but not easy to do with my face buried into his shoulder while tranferring him.  I learned very quickly that there were some things I just could not fret about…if I needed to keep him to the routine to which he may have become accustomed, we’d just have to work through whatever problems that incurred.  He’d be as comfortable as possible in his chair by 10am.  Two hours, now, to take care of household chores before changing his position, putting on his splints, more meds.  Strip the bed and gather up the linens, his hospital gown…I’d considered pj’s but the hospital gowns were really the most practical and the most comfortable for him, I thought.  Laundry started, dogs out in the yard, vaccuuming/dusting done, floors swept and mopped and, all the while, keeping up a running commentary, stereo or tv on to fill in any possible ‘gaps’.

Noon…all change!  Fred up and back to bed, shoes off, hand and foot splints on, meds given and tucked in for a nap.  The tv channel already tuned to “Days of Our Lives”!  Kim had charged me to promise I’d make sure he saw it every day…heaven help us!  LOL!  At that point I could go get my shower and have lunch.  Not then or for many months, could I bring myself to eat in front of Fred.  I had tried to, I felt like he looked at me, wondering why I wouldn’t share but when I did, he wouldn’t swallow and I’d have to go in his mouth to hook out what he had pocketed away in his cheeks and a couple of times he’d bitten down, almost getting my finger.  After lunch, play time with the dogs in the yard, while Fred slept. 2pm, time to turn him on his side for a while and at 4pm, turn him on his other side.  6pm…check the feeding tube, meds, shoes on to get him up in the chair until around 8pm when he would be back in bed for the night.  Depends would be changed throughout the day, every two hours.  Once Fred was back up in the chair I would see to my dinner, paperwork, bill paying etc. until time to get him back to bed…another bed bath, head to toe, fresh gown and made comfortable.  I’d sit by his bed until 10pm when I would pull down the sofa bed and watch tv until either I fell asleep or need to adjust his position in two hours, at midnight…whichever came first.  Throughout the night I would be up every two hours.  This all worked for a while but eventually…actually, sooner rather than later, I’d change it as I went along, making things easier both for Fred and myself.

The CNA coming from the agency was to be there Monday afternoons, from 1-3pm.  His name was John, around the same age as ourselves and, I soon learned, a great guy.  I’d specifically asked for a male nurse…mostly because I figured he could talk to Fred, sort of male companionship for a couple of hours which might be good for him.  During the two hours John would be there, I could go take care of shopping, banking etc.  His first day with us I learned he was retired military…Army…so there was something of a common bond.  There was nothing for him to actually do except ‘watch’ Fred, be there should the pump or the PEG act up, a safety measure while I ran errands which I could not…would not…do, leaving Fred by himself.  And I have to admit, even knowing this was necessary it was as hard…if not harder…leaving someone else in charge of Fred than it was the first time we left our infant daughter with a sitter.  The responsibility for Fred’s welfare and life did lie heavily and not then, not ever, did I want anything to happen to him on someone else’s watch for I, first of all, didn’t want them feeling badly and I didn’t know how I would deal with the guilt I knew I’d feel.  After a couple of weeks of John being there, he suggested I leave Fred’s personal care until he came in…felt he wasn’t ‘doing enough’.  But he also was trying to caution me not to feel I needed to do everything by myself.  It was early days…I hadn’t learned to be able to let go, just a little bit.  I didn’t know if I ever could.

Published in:body-mind-spirit, inspiration, life, Uncategorized |on January 15th, 2009 |3 Comments »


The day was drawing near and much to be done.  Fred would ‘berthed’ in the family room where we already had the tv and fireplace.  The previous owner of the house had added it next to the living/dining room so, from there he would be able to see through the doorway to dining area and kitchen…all I had to do was widen a door and get one of the kitchen walls removed.  While I was at it, the back wall of the dining area had a window which could come out and a slider put in, leading to a deck I’d have built.  The good ol’ ‘snowball effect’.  All I had to do was decide the starting point and find a contractor.  I chose getting the slider in, first.  It didn’t take too long and as the guy was finishing up with the slider he asked me what I was going to do next…did I plan to have a deck built?  I looked outside at the 2′ drop from the new dining room slider to the back yard…”Actually..I’m thinking bungee jump…”  Did I plan a deck…sheesh!  A contractor came to remove part of the dining area/kitchen wall and build a breakfast bar as both divider and replacement for the dining table and chairs, now long gone.  Of course that meant new flooring throughout living/dining/kitchen, painting of all this area and then I realised the doorway to the family room needed to be widened, not just  to accommodate a wheelchair but offer a better vantage point and view for Fred to see what was going on ‘next door’ as I (and the dogs) was going about the daily business of chores and care.  The deck was built, complete with ramps and, for now, everything that immediately had come to mind was done.  At some point I wanted to have a second bathroom added on to the family room for his comfort and convenience.  Since his ‘awakening’ he’d been accustomed to his nightly shower…infinitely preferable to a bed bath…but there was no way of continuing this at the moment.  Then I remembered I needed to have the front door widened and a ramp installed from there to the driveway.  I knew I’d never be able to get Fred into our car but at least would then be able to take him outside for walks.  For his 21st. birthday, my sister arranged for her son…my favoured nephew…to fly out and see his beloved uncle.  Since his Dad had left them when he was seven, Fred had pretty much taken over the role of Dad, they were very close and my nephew idolised him.  He was coming to help me get Fred home and settled.  He arrived a few days before Fred’s discharge and, of course, I was still making trips up to PA to see him and finalize arrangements so we took that last journey up there two days before Fred was to come home.  The hospital bed was delivered and ready, as was the feeding pump and stand.  All necessary supplies had been bought.  We were ready!

July 31st. 1992, Fred came home after his almost ten months absence.  It must have been somewhat confusing for him..he didn’t seen to recognise where he was and, into the bargain, he had again not travelled well but been very sick on the long journey home.  This was it…jump into the fray and get him cleaned and freshened up before getting him in bed and it hit me…we were on our own!  I didn’t know how we would do it but do it we would and, hopefully, without any break or change to what had been his routine for  the last eight months.  Except there was one thing I had not thought of and no-one mentioned…a wheelchair.  I didn’t have one nor did I know how or where I was supposed to acquire one.  We had talked about it at the centre and I think I assumed that they would have taken care of that…CHAMPUS would have…and it was just a matter of waiting for delivery.  Meantime, intent on keeping his routine as close to what he had been accustomed, I went out next day to rent one from a medical supply house while my nephew stayed with Fred.  Didn’t take long to learn a rented wheelchair just would not do!  A regular wheelchair would not do…he would need one built specific to his needs, height etc.  I brought the chair home and next morning we would get him up, as usual.  It seemed logical to me that I would sleep in the family room.  This room was 28′ long, front to back, 12′ wide…doorway into the body of the house and directly opposite this doorway was one going out to the screened porch where our ’67 Fairlane was stored.  (I only mention this since it would seem much easier had I put a slider out to the porch instead of having to have a deck built out back and ramp out front but there was nowhere else to put the darn car).  But the room was basically in two sections, ‘divided’ by both doorways.  I had Fred’s bed and equipment in the top half, facing the opposite end where tv and fireplace were.  In that half were our recliners, sofa bed, grouped around tv and fire.  Sleeping there I would be aware of anything and everything, 24/7.  I was confidant!  Actually, at that point it was more bravado than confidence and while I know I never would have changed my mind on bringing Fred home it did cross my mind it was insanity.  Here we go…

I didn’t sleep at all the first couple of nights, always getting up to check the feeding pump, his breathing, despite the fact that I would be up every two hours, anyway, to change his positions.  Mornings, I’d be up to grab a cup of coffee before getting started then do his bed bath, shave him, get him dressed and get him up into the chair (we didn’t have!).  Having brought a rental chair home, the following morning I did get him up and into it.  This was not going to work…the seat was a sling-type and he needed much more support than it provided so he slumped.  I was grateful for my nephew being there for, together, we managed to get a pillow under Fred.  Didn’t help much but was the best we could do.  There was also no neck or head support so, more cushions and pillows.  No question I couldn’t keep him in this wheelchair for very long and also that once my nephew had returned home, I could not even come up with any possible to even get him in this particular chair with a modicum of comfort and safety.  But for now, and with my boy’s help, we could wheel him into the main part of the house, show him around.  He seemed happy at seeing the dogs, didn’t show much recognition of his surroundings and he certainly seemed to very taken with our nephew, almost as though he remembered him.  And then came the first hiccup…bordering on panic.

The weather was very overcast that day, tv was on and late in the afternoon a tornado watch was announced.  Tornado??  I hadn’t even thought of such a thing…surprising, since the very idea of tornadoes scares the hell out of me at best!  These watches and warnings always made me nervous…nowhere to run, nowhere to hide, least of all in a rancher with no basement, no safe place.  Not that that would have helped.  What to do and where to take a man as helpless to help as Fred was?  And I couldn’t just run off screaming, leaving him in a bed!  Then I had my nephew and his, then, fiancee.  I instructed them that if it looked like the weather was worsening and a tornado imminent, they had to run for the bathroom in the hallway.  It was between it and a little hallway behind it, at the back of the house which housed our laundry area and seemed the safest place for them to take cover.  He argued, wondering what I would do, what could we do with Uncle Fred.  The only thing I could come up with was “we just have to take our chances”.  Hopefully this watch would pass soon and then I really would need to think about this.  Fortunately it did.

In the few days my nephew had left with us, it gave me a chance to get out for anything and everything Fred and I would need, stock up…to call around the various home nursing services to arrange for someone to come in on occasion, allowing me to take care of banking, shopping, things that were necessary to the running of a household and providing for Fred’s needs.  The VA had come through with a disability pension for him which was a boon in helping to provide those needs but I also had some appointments with them to have everything explained to me.  For that they would come to the house.  I was still in contact with the centre for final paperwork, they checked to see how Fred was settling etc. and I asked about the wheelchair.  Which is when I found out that this was not their responsibility or CHAMPUS’s.  Now it was the VA’s and I had to file a request for someone to come measure and fit Fred to one appropriate for his condition.   As it happened, once I did it took a couple of weeks to get the home visits, measurements, and a number of weeks before his wheelchair would be ready.  My nephew and his fiancee returned home and now time to settle into a way of doing things which would become the pattern.  The rental wheelchair had been returned after that first weekend…it served no purpose…but somehow I still had to find a way to get Fred up out of bed, at least a couple of times every day.

Brilliant!  I would move his big recliner across the room next to his bed!  I knew how to get him out of bed, could swing him around and into his chair and, voila!  Yaaayyy!  It was the next Sunday…a week after Fred came home.  Bathed, shaved, dressed, shod..sitting up in bed watching as I shoved this huge chair over, got it positioned and we were ready.   Got him upright, feet on the floor, up, up and away, swung him round and lowered him into his chair.  Tah-dah!  Made it!  Positioned a couple of pillows on either side of him to help prevent serious slumping to either side and a light throw over his legs.  Being a recliner, I could at least change the leg position every half hour, too.  I was actually quite proud of our accomplishment…but, you know what they say.  Pride cometh before a fall!  Two hours later, time to get him back in bed for his rest period.  This was necessary for, as much as he needed to be up in a chair fatigue would become very obvious, particularly since a recliner wasn’t ideal for him though better than nothing, I thought.    Okay…stood in front of him, his right leg between my two and arms under his shoulders, lift.  Lift!  LIFT!!!  Nothing…I wasn’t lifting.  Heave!  Nope.  I could not get him off the seat so much as an inch.  And I couldn’t understand why.  Tried a few more times…no.  Stepped back and surveyed the situation.  It seemed to me it was because the seat of the recliner was slightly raised to the front, dipping back a little at the rear and I knew then I was not going to get this man out of that chair without help.  Called Tom, the neighbour.  I did hesitate for a few minutes.  It was my decision, my choice to bring Fred home..knowing then, as now, I had to be able to do everything, every little thing for him without help, without needing or having to depend on calling a friend or neighbour.  Paying for a nursing assistant was one thing but asking others to help me could not come into the equation.  This was my first emergency.  But no-one was home next-door.  Among the neighbours we had come to know, nearly all were elderly and the others I didn’t feel we knew well enough to impose.  Off to the linen cupboard.  I’d get a sheet, wrap around Fred from back to front and under his shoulders, wrap each end around my hands, pull up up and outward.  I explained all that I was going to do…he looked at me wide-eyed, a bit disconcerted.  Didn’t take but one attempt to know I didn’t have the height to do this…even if I could raise his butt from the seat there was a vision of the 1’+ difference in our heights (combined with his dead weight) sailing over my head and toppling us both.  I even considered…and discussed with him…the possibility of lifting his legs up onto and across the bed, pulling and pushing the rest of his body over from chair to mattress then turning him lengthwise.  At least he laughed!  But the chair was lower than the bed so this was a no-go.  I’d left a message on Tom’s answering machine for him to call when they came home and he did, about two hours later.  By then I was almost in tears…frustration, feeling useless but mostly seeing that poor Fred was exhausted, obviously uncomforable having been in this chair for much too long.  At that moment I felt I had done everything wrong.  Tom came over, I told him what I thought he needed to do, I did my part and with a little bit of struggle did finally get Fred in bed…at which point I vowed to myself that, despite what I knew needed to be done, he was not going to be getting out of that bed until either his wheelchair arrived or I could come up with a better temporary measure.  I opted for the latter.  All evening the mental wheels were spinning on what I could do about the recliner to make it so getting Fred in and out was manageable for me.

Eureka!  The very thing!  I’d get him a lift-recliner.  Not only did I believe I could use it to get him out of bed, for now, but later we could use it just for him to sit in, a change from the wheelchair (once we had one) and give him some sense of normalcy.  By first thing next morning I had the phone number of a dealer, called them at 8am.  They had one in stock, asked what colour…I didn’t care, could be purple with lime green polka-dots…how soon could they deliver?  Next day!  When it arrived, I’d already given the other recliner away to fit in with my plans.  The lift-recliner was positioned by Fred’s bed and I did try it out before the delivery men left.  Wasn’t perfect but it worked…I could get Fred into the chair no problem and to get him out, just raise the seat up a little to where he was halfway upright and then, to bed.  At the same time, once he was in the chair, I could get behind it and push chair…and Fred…across the room to the sitting area where he could be in his chair to watch tv with no hospital bed, other medical apparatus in view.  We would do this for about three months…until his wheelchair was delivered.   Next??

Published in:body-mind-spirit, humour, inspiration, life, Uncategorized |on January 15th, 2009 |1 Comment »

Dog Days

As the weather improved, moving into Spring, I decided it might be time to bring the dogs for a visit…see what, if any, response that would elicit. Of course I first asked permission and it was readily given. I’d stayed at the Red Roof Inn a few miles down the road from the centre..sometimes, with whatever was going on, I’d feel a need to stay an extra day and/or didn’t want to cut into my ten days a month free lodging in the townhouses. It was the nearest motel, clean, I’d come to know the staff there and they were always most accomodating so I enquired about bringing the dogs for one night. They said that wouldn’t be a problem. Hopefully, it wouldn’t be for me, either! I’d taken them to the vet…a few miles down the road from home; the kennel, but very, very rarely and, again, just a few miles from home. A 5-6hr. trip would be an adventure, to say the least! I wasn’t sure I’d even want to make that journey with children! I left later that day, food, water and dishes all packed. I would only stay one night as two days with them out of their usual environment and routine might be difficult for us all. When we arrived, I went to the centre first, leaving the dogs in the car. Visited with Fred for about an hour, checking on the pups periodically…they were just fine, snoozing on the back seat…but I wanted to get to the hotel, checked in and give them their last run of the evening then settled for the night. Tomorrow was the big day…I was anxious and curious to see how they would react when seeing “Dad”. Around ten I went to get Fred and bring him to the foyer where he would see the dogs. Carol was a great help, staying with him while I went out to bring them in…she was always helpful that way but she also was anxious to see the dogs I talked about so often! When I brought them in and walked them to Fred’s wheelchair he looked at them for a few minutes, no reaction…then suddenly he began to laugh and cry, simultaneously and tried very hard to open his right hand resting on the wheelchair arm, as if to invite “Come!” The dogs were curious…sniffing around the chair, his shod feet, but it wasn’t clear whether or not they remembered Fred. And I asked Fred if he knew who they were. He mouthed “Dogs…” but there didn’t seem to be recognition. HIs response so far was of one who just loved animals, I thought…something he would probably do with any other dog or cat, any time. I lifted our little female, Scruff, onto his lap and suddenly she went wild…licking his face, hands, tail beating a tattoo on his legs, giving happy yips all the while. At that, Fred’s face changed and I had no doubt he remembered something…maybe not their names, probably not how long we’d had them (ten years for her, nine for our male) but seemed to me he knew he and they belonged to each other. I traded places…her for our male, Shadow, and the greeting was even more frantic for he had always been Fred’s dog more than mine while Scruff was definitely my girl. We sat out in the foyer all morning and, collectively, we had many visitors, staff taking photos and the dogs well and truly made a fuss of.

I already knew that Fred’s short-term memory was pretty much non-existent, his long-term…well, we hadn’t begun to test that yet. Where could I go with it? Not knowing where his memory could go I wasn’t sure if I’d open a can of worms, so to speak. It didn’t seem like he could initiate…he never asked a question spontaneously, never had asked where he was, how he got there, what happened. I had told him of his previous months’ journey and then, if I asked him if he knew what had happened, he didn’t. Once he told me he had been in a car accident. I asked him if he knew who I was and he responded, “Agnes”. Agnes is my given name but one I only have ever used to formally sign legal or binding documents, cheques. No-one has ever called me by that has always been Nancy. Even when prior to our marriage, the minister asked which name I would be using during the ceremony. Fred had said “Nancy..” but I told him…and the minister…I couldn’t do that. Agnes was my given name and I believed that was what should be used. So it was to be..until during the ceremony and minister used my name for the first time (and thereafter throughout) he said “Nancy”. I have to admit that really disturbed and upset me and I wondered why he ignored what I’d requested. When the ceremony was over and I was complaining about it to my parents and new husband, Fred admitted that a few minutes before the ceremony began he went to the vestry, asking the minister to use Nancy “because if he called you Agnes I’d feel I was marrying a stranger. I don’t know you as Agnes!” For him, then, to say “Agnes” made me laugh but it was something of a surprise. I had then asked him who Agnes was…what was I to him. He shook his head negatively. Could be he didn’t remember I was his wife of now 27yrs…had to wonder, though, who he might have thought this Agnes person was! Did he remember he was married, did he wonder about children? I didn’t want to go there. Our daughter had died four years before he became ill. In those four years we were learning to try to move forward and it was far from easy. While four years later I was a very, very long way from where I am today, I was working on it. Fred, on the other hand, seemed to be at a standstill, possibly even reversing. And, like it or not, it had occurred to me that given his health issues, his frailty now, if he didn’t remember out daughter that might not be bad thing for him and, for now, I wasn’t going to push him to revisit that time. It wasn’t an easy decision to make. Selfishly, perhaps, I suppose I resented my own decision in a way for I found it put me in a very lonely place. With whom would I share the memories, the photos, the joy we had in raising her? Our family history? Yes, of course there was my mother…my sister and nephew..but for most of our lives, living a rather nomadic existence in the military, much of our history and memories were just ours…the two of us. There were still many hours and days of sadness, still grieving and I had no-one who could quite share that of a parent with me, either. But it could not be helped…well, the counselor had even suggested that he would be willing to sit in with me if I wanted to talk to Fred about our daughter but the risk of setback deterred me. Life had to go on and we would manage, cross whatever bridges popped up naturally and not force a one of them.

The dogs were really very good, behaved themselves much better than I probably expected and we made the trip home without incident…no scrapping in the back seat, no “accidents” in the hotel room! This was the only trip they made up there, however. Shortly after this visit, I was to learn that Fred was being discharged in a few weeks. Again, there was much to do…more than when he was being shunted out of the hospital.

Fortunately we lived in a rancher with two bedrooms, living/dining room, family room, kitchen and one bath. The bedrooms were out of the question for Fred to be in…they were at the end of a long, narrow hallway which would negate maneuverability of a wheelchair but, apart from that, I wanted him to be at the hub of any activity going on, daily. That would be the family room. The bathroom would serve him no purpose at all…it was off the hallway and measured about 5′ x 4′! Part of that taken up with the tub. I’d have to start planning so that when the announcement came of his discharge I’d at least have the beginnings of ideas how we would manage.

Meantime, I asked his therapists to now allow me to do what they did, days I was up there, under their supervision. I had to learn not just by watching but by doing. Also his nurses and CNA’s. Always being elevated to one degree or another while in bed, a body has a tendency to slowly slide downwards and, in his case…as with any tall person…feet tended to crumple somewhat at the bottom so while his position was changed every two hours, they would lift him back up the bed towards the head. Naturally it didn’t escape me that it took two of them to do so! Hmmm…now, how would I manage that? I thought I had it figured out so one afternoon I moved his bed slightly forward, stood behing the headboard and put my hands under his armpits. Heave! Ummm…Heave! Nothing. I couldn’t get any purchase…standing 5′ tall I barely topped the headboard so I was banging my elbows on it, bruising my hip joints on the lower portion. This could be a worry but maybe when I got him home I could figure it out. At any rate, I wasn’t saying word one about my “failure”! Was not going to give them any reason to tell me I couldn’t take him home, least of all now. He was no longer being fed food…all attempts had failed so we had stopped trying. PT…the standing frame had proved to be beyond Fred’s capabilites and that, too, had been halted but there were still other, minor, activities being done, not the least of which was transferring Fred from wheelchair to raised exercise mat where we would work on range of motion for his legs. I asked the tech to allow me to do a transfer one one. He showed me how it was done then got Fred back in the wheelchair, allowing me to do the move but the young man was obvious in his grave doubts! I did it..he laughed in delight and said “Wow…I give you 98%! They must breed them tough in Scotland!” I was just so tickled that I’d succeeded in moving Fred to the mat…without either or both collapsing to the floor! But I told the tech, pointing to my arms and then my heart, “Aaah, I guess it’s not the strength you have here (arms) but what you have here (heart)…” So, from then on, the days I visited I did his transfers. Then there was his PEG…that was critical and I needed to know not only how to clean it, the entry wound, adjust it, set it but also how to replace it if it should be pulled out. Nothing bothered me about doing any of those things except replacing it…besides being a bit squeamish at best, how would I know if this hurt him or not, having to push a tube into a wound, into his stomach? And really it wouldn’t matter for it had to be done and as quickly as possible should it pop out. The wound would quickly close up, it would also mean he would go without nutrition or water until someone got it back in if it meant going to an ER. I couldn’t take Fred home if I was unwilling or unable to do everything for him that needed to be done.

Financially, things were much better.  His disabilty insurance was arriving monthly, SS disability had begun in April.  The VA was still processing the claim I had submitted and then they needed copies of the UMMS hospital records which I’d gotten and taken to them.  Finally, the day came when I was told of his pending discharge.  July, 30th.  CHAMPUS had decided that he had probably made as much progress as he was ever going to and his prognosis was not great…I guess not great or good enough to continue paying for this sort of care if nothing more was to come of it.  I had met with a representative of CHAMPUS one afternoon, up at the centre.  Wasn’t exactly satisfactory.  She had begun talking about where we were going to move Fred now and I told her.  That wasn’t much to her or their policy’s liking nor was it to mine for while they would pay for a nursing home they would not pay towards his needs if I took him home.  And we would need many things…his nutrition for one thing plus the equipment to get it to him; catheters…well, they were going to go by the wayside.  He had in-dwelling catheter which I wasn’t too happy with.  For one thing, there is a risk of infection with them, not to mention what if in his daily bed bath, frequent position changes, it was pulled out?  I don’t know whether “OUCH” was applicable or not but I sure thought it must be!  And even with a catheter we still used Depends or such like.  I already knew how many of them we would go through in a day.  The Ensure nutrition would cost $600 a month.  This rep said those costs would be refused, not reimbursed.  Well, I pointed out the nutrition was medically necessary…why wouldn’t they pay for it?  She told me “Because he has to eat…you would be paying for his food if he was eating, anyway, and we don’t pay for that!”  Fine…but who eats $600 worth of food a month?  Or did, in 1992?  We ate well…good, healthy food and even with snacks, treats etc. my food bill had never been $600 for two, let alone one!  But, okay…somehow we would manage.  He would get his Ensure and for me…hey, there was always the dogs kibble!  😉

Published in:body-mind-spirit, inspiration, life, Uncategorized |on January 8th, 2009 |2 Comments »

New Year, New Hope

We remained at the centre for three days. The day after Christmas our friends arrived around lunchtime. These were the first visitors Fred had had, besides me, since being there, and of course I was excited to tell them of the big event of the day before. It was temtping to keep asking Fred questions which could only be answered by a nod but I was careful not to do so. His Mom went home before New Year’s…to be honest, I have no recollection of what I did Hogmanay that year. I know New Year’s Day I was at the centre and stayed on a couple of days to be with him during his therapies, when they resumed. Eating was proving to be a challenge…he had what they called a rotating chew which they said was good…and not often the case, normal in an adult as opposed to an infantile chew but swallowing seemed to be the difficulty. Of course the food being fed to him was pureed and I had to wonder if part of his problem was that he hated mushy, squishy foods and just was not going to get it down. He would pocket mouthfuls in a cheek and most often his therapist would have to then scoop it back out with a finger. The tough part…or one of them…was that when eating he would have to eat a specific amount in a certain number of minutes. I’m sure there was a logical reason for this but I would wonder if, had he more time, would he do better? Physio-therapy was typical…exercising his limbs, keeping his muscles fluid while maintaining some strength for possible improvement when he might learn to stand and, who knows…maybe even take a step? For now they would move him to a long table which would start out horizontal then moved, gradually, to an upright position. He didn’t do so well on this…movement upset his equilibrium, occasionally causing him to throw up. Days he did better, they would leave him upright for a few minutes at a time, lengthening the time frames gradually. Recreational therapy took various forms from wooden boards with blocks to fit into corresponding shapes, to cards etc. Fred could, by this time, move a couple of fingers on his right hand, nothing on his left…but he could not lift or move his either hand. He could move nothing and he could not verbalize in any way. The days I was there I’d try feeding him some treat or other, periodic moving his arms, legs. I’d take over the putting on and taking of the four splints when necessary, freshen face and hands throughout the day and tend to his oral hygiene. That was probably the toughest. First couple of times wasn’t too bad…he allowed me to get the toothbrush in his mouth, brush, and get it back out but since he didn’t eat we had a problem with his tongue. I learned that for people who cannot eat, papillae on the tongue will overgrow and we needed to brush or scrape his tongue. First time I did this he clamped down on the brush and I have to admit I was surprised at the strength he still had. Nothing would induce him to let go, to open his mouth and there was no way I could pry open his clenched teeth. I couldn’t run for help or advice…didn’t dare leave him with this object in his mouth and risk choking. So I hit the call button. We all laughed about it later for his night team hadn’t realised I was still there so to be called to Fred’s room…they ALL showed up! We cajoled, physically attempted, to get his jaw to open but…nope. All I could do was sit it out. One of his nurses told me that a few days before she had been using a tongue depressor when he bit down on it, so hard that she was sure it would split and this would not be good news. I could see that! All we could hope for that he would soon fall asleep and his jaw muscles would relax. I told them that from now on, I wasn’t brushing his tongue…I’d leave it to them. Before I left for the night I would make him comfortable, turn him on his side, packing pillows behind him. He needed his position to be changed every two hours…one of the keys to helping prevent bedsores. So far we had been lucky…he had none and we wanted to keep it that way. His head also had to be always be kept somewhat elevated due to reflux, if he coughed, anything that could choke him and unable to move to help himself. His face had returned to it’s normal slimness and structure, his body boney…considerably thinner than he had ever been before and he had always been of slim build. At least now he was getting showers, though…they would come in around 8pm, transfer him to a shower gurney and wheel him off. He’d come back fresh, clean and smelling of Old Spice. All in all, every aspect of his care was nothing short of excellent, from nursing assistants to physcians to dentist. First couple of times I met the dentist bemused me. A tall, very distunguished-looking man with permanently jovial features. He wore dark slacks, white shirt and a very colourful bow-tie, picture or cartoon buttons on the shirt and lace-up sneakers. It was about the sneakers…each one had bright, colourful, cartoonish laces with bells or other baubles on the ends. I asked one of the nurses if he always dressed this way and was told he did it for the patients…just another ‘stimulant’. Thus were our days at the centre. Days at home were catch-up for the business of running a home, learning as much as I could find about coma, the legalities, filling out reams of paper-work.

Not the least of those was filing for guardianship of my husband. Once I had applied to the courts I learned that an attorney would be appointed to serve on Fred’s behalf. He or she would visit the centre to assess Fred’s condition, back to the court and then it would be decided whether or not I qualified. This was a worrying time. I mean…I had been his wife, mother of his children, for going on 27yrs. Taken care of our family, household and finances the few times he was serving where we could not be with him at all or would take a few months for us to get there. But what if they didn’t deem me suitable? There was no reason to me that this would happen but the decision was not going to be mine to make. I had never known anyone who had become the legal guardian of a loved one so had no idea how the process worked or was decided. And having to interview Fred? Visit with him? What would they glean from that when he could not respond to questions, tell them what he wanted, nothing? What would I do if if guardianship was not granted to me? Frankly, I didn’t know. From day one I had no other thought than to take care of this man until “death did us part”…whomever went first. To think that a court or some stranger would be appointed to direct our lives, make decisions for us that we could not balk against…that would be unacceptable for me. Oh, well…cross that bridge when I came to it. Meantime, I received a letter from the court telling me date and time their representative would be visiting Fred. It was a woman and she would be flying into Pittsburgh to be at the centre at 11a.m. My visit a few days prior to the appointed time, I notified the staff at the centre of this pending visit and I said I would be there, I wanted to be present for the proceedings and, if possible, not to allow her to see Fred until I arrived. That morning I left at 5am (normally I’d leave home at 6) and drove like a bat out of you-know-where, no stops. Too late…she had already been and gone…insisted she could not wait as she had to get back to Maryland as soon as possible. I was frantic…and pretty much stayed that way until a couple of weeks later I had a letter appointing me as Fred’s legal guardian and outlining all that this would require. It included a reminder that this guardianship could be revoked should the court see fit. Well, I wasn’t about to give them reason! Finally, I could submit a copy of this document to the insurance company and we would have income, again. It only took them another month or so to begin paying out.

Fred had been the only occupant of his room, since his arrival. One they called to let me know that they were moving him down the hall…just so I would know when I next came up and not panic! This was an even nicer room with big window through which he could see the quadrangle. A young man was in the bed by the window, Fred by the door. This young man…Joe…had made a good recovery from his brain injury. In a wheelchair…but he was now talking and even getting home visits on weekends. They thought this could be beneficial for Fred, company…someone to talk to him, seeing the other residents outdoors now the weather was improving somewhat. I then changed my visiting routine to go up on Fridays, come home Sunday. Joe was a local boy and his family visited on weekdays/evenings so there was much activity. Weekends, with no therapies, no Joe, the activity level changed so I figured I could take over as Room 101’s Activity Director. It worked out quite well and when Joe couldn’t go home, he then had company for the weekend. I soon learned that Joe was about ready for discharge…a few weeks and he would gone. Great news for him and his family! And I then reserved Joe’s bed for Fred…right by the window. In fact, when Joe left Fred was back, once more, to a private room. Only thing lacking was a tv. That had been Joe’s. I’d arrived on the Friday and when I saw the cable dangling, decided to take a run into town and get Fred his own tv. He was a little more mentally alert and seemed to be happy watching television, regarldess of what was on. I realised this one day when his CNA came into do various things and switched to “Days of Our Lives” saying, “Fred! Time for our soap!” Hysterical…I had never watched a soap in my life and the very idea of Fred thinking about doing it, let alone doing it, was hysterical. When she stepped out for a minute, I asked him if he was okay with this. His eyebrows shot up to his hairline, eyes widened…but he nodded yes…LOL. Okay, then…whatever he wanted! And no, I really wasn’t sure if it was what he wanted, perhaps just that the tv was on. So I’d leave them to it…Kim to do what she ‘needed’ to do for that hour and them both to watch their scandalous soap…and then she would comment and discuss it with him. LOL! I didn’t mind…I’d go to the smoking lounge and chat with other family members if they were there or read…and I was content knowing that there was a good relationship between Fred and those who cared for him. Each one had told me how much they liked Fred…he was a good patient. Oh, sure…easy to say about someone who didn’t talk back, couldn’t complain or raise a rucus (which, in normal health, he would have. The very little he was sick, he was NOT a good patient!) but while I say this, I had noticed that he really seemed to pay attention when they were asking or telling him what they needed to do, what they were doing and why and he was more compliant with them than with me. Apparently it worked for him and for me too, knowing I wasn’t and couldn’t be there every day while they were.

One day, while we were wheeling him to Speech Therapy and a try at lunch, we had to stop while his therapist ran back to the nurses’ station. I was standing by Fred’s wheelchair, talking to him…just chit chat about this and that and went looking in my bag for something. I noticed him watching me intently so began taking things out to show him. The first two he just looked, the third was the cheque-book. I took it out and held it up for him to see…he nodded slightly then his lips moved! “Do you know what this is, Fred?” He looked at me, mouthing “Cheque-book…” “What is it for?” I asked. Now, you might think that to be a stupid question to ask a grown man but no-one knew or had anyway of telling the extent of the damage done by the aneurysm. A couple of weeks before he had been transferred up to the centre they had asked me if I wanted them to do a neurolytic study…they didn’t expect much but it would give an indication of any brain activity going on. Of course they should do it. When they did and came to tell me the results it was not good…I asked them when they would do another and they wanted to know why they should. I’m not doctor but this was a first for that study. Okay, they actually found that there was nothing going on, basically no hope of brain function but…where was the harm in doing another at a later date. This one would be a base-line and only if they did another could they ever tell if anything was changing for his good, no? I mean, why do one if you don’t plan to do another? They never did…but then Fred was moved so I can’t criticize. And this is why I asked what would otherwise be an inane question. Again, Fred looked at me and mouthed “Money! Do we have any?” I wasn’t sure whether to laugh or cry…so did both. When the therapist came back and we resumed our ‘road trip’ I was telling her what happened. She was very excited…this was another first. But still he wouldn’t eat. We had him off the trache, wanted him off the PEG and all that would remain would be the catheter. They decided to take him to the local hospital for scan, endoscopy etc. to see if perhaps there was an obstruction or some physical difficulty preventing him from swallowing. Results came back…nothing, no obvious reason but probable vagals nerve damage. In PT, they now had him in a standing frame…they would wheel him up to the frame, two PT techs would raise him to his feet and attach safety straps, then lean him in to a little table top attached on which he could lean. This would be a prelude to learning to walk, if successful. Another ‘step’ forward. Once a month I’d meet with Fred’s team members and staff, we’d discuss his progress, problems and possible treatments. There weren’t many…he had had occasional seizures and I was aware that even with his medication, they would likely continue or at least he would be at risk for them. Despite the diligent use of his splints, there was severe spasticitiy in his upper body developing and, one day, I was asked if I would authorize them to do a nerve block which could help. They explained it to me and did say that it would not be without risk…that being it could stop his heart. I asked for time to think it over, particularly since it was not an emergency situation. However, I was sure I would agree and sign the consent form. The director…a neurologist…would do it himself so I asked for day and time and that it not be done until I was present. They had no problem with that.

The morning of that day I was, once again, up and on the road earlier than usual, dismayed to find it was pouring rain, windy and was expected to last all day. I wasn’t wild about driving in those conditions but had no choice. Traffic seemed a little heavier that morning and, as usual, I chose to drive in the middle lane. At some point I needed to pass but there was a car to my left, maintaing a constant speed and not allowing any room for me to get in front to pass or even get behind him. Two people in the car…probably old, I thought. We drove like this for about thirty miles, still in the same formation and no way of bettering it for me. Finally, I noticed the car to my left was gone, I moved over and sped up. Travelled about ten miles in the fast lane until I came to the top of a hill, on a wide curve when I moved back into the middle lane. I’m driving along quite happily, up another hill, over in the fast lane, listening to a music cassette. Then I noticed an odd sound I couldn’t identify…seemed to be coming from the tape. I looked over at the tape-player like it would give me an answer, turned up the sound…that noise was still there and I knew it was not there before. I’d had this tape for twenty years, for crying out loud…never heard this before. Oh, well…no big deal…and then I looked to my right. This car which had annoyed me earlier was back and now seemed to want me to get out of the way so he could move back into the fast lane. Well, at that juncture I couldn’t…looked back at the driver and shrugged. Was he giving me the one-finger salute?? How dare he! Well…too bad. I stayed put, looked over yet again and to my horror the driver now had a hat on…a very attractive State Trooper hat! And that had been no ‘salute’…he was pulling me over! Zooming down another hill, pouring rain, I got in front of the car in front of him, and gradually came to a stop…and ready to pass out! He pulled in behind me and walked up to the window. First thing he said was, “Ma’am, you and I have travelled a good portion of this road together. I’d say about thirty miles? You were going a little over the speed limit but I let it go. NOW you were doing 85 miles an hour!!! What were you thinking?” And, by the way, yes…I did know how fast I was coming down that hill. I gave him my licence, insurance…he studied the licence then said, “You’re a far way from home this early in the morning??” I told him I had an appointment up in Pittsburgh, had to be there by ten (BTW, enough time and trips had gone by I knew I could do this journey in five hoursm with my breakfast stop…and we won’t even discuss at what speed). But I was proud of myself for one thing…I was wrong, I knew it and so be it. I didn’t even think about trying to get out of it with telling him where I was going, why and what for. (That didn’t stop the staff at the centre giving me such a hard time about it when I told them I’d been pulled over for speeding!) And then the trooper surprised me. “Okay…for the travelling we’ve done together, this morning, I wll say you seem to be a careful driver, a good driver, using your lights, indicators…I can only fault you for your speed. If you want to get to your appointment, I suggest you back it off! I’ll give you a warning….” Phew! Could not believe he would be this generous. Then he said, “What part of Scotland are you from?” When I told him, he was familiar with the area and then he tells me he’s Irish…”And guess what? My vacation starts in two days and I’m going home to Ireland!” We had a lovely chat, he cautioned me again to slow it down and be safe, I wished him a wonderful vacation and a safe journey and bid each other good-day. And don’t think I don’t know how lucky I was!

Oh, the two people in his unmarked car? Just him…but he had his hat sitting on top of the headrest of his passenger seat! He told me he was on his way to court, in Cumberland. I might be a Scot but that day I had the luck of the Irish. Doubly so, when Fred had the nerve block and suffered no ill effects.

Published in:body-mind-spirit, humour, life, society, Uncategorized |on January 5th, 2009 |2 Comments »

Christmas Miracle

Days went by at a slow pace…I had four or five with the dogs, two or three up in PA with Fred.  I was happy to see that my mini-absences seemed to have no ill-effects on my pups but I still felt sorry having to leave them.  Life had changed for them, too and, unlike myself, they had no idea why.  Fred was stable…nothing more had happened to get too excited about.  He was maintaining.  His company lawyer was finally getting somewhere with the insurance company and had convinced them to agree to making the one-time payment up through November.  I couldn’t begin to tell you the relief that was but I did have to arrange for guardianship.  Fine…I would do that come January.  Meanwhile, I was of course keeping Blanche up to speed on Fred.  When she left in October she had said she would return as soon as she could.  One day, soon after Thanksgiving, she called to say she would come from Christmas and I was happy to hear that.  I didn’t think we would go up to PA Christmas Day, however.  Interstate traffic, I knew she wouldn’t want to drive in an unfamiliar area and perhaps not that particular day with me driving.  Friends of ours had asked if they might visit Fred the day after and even had suggested we all ride up together.  Blanche was agreeable to this…I, somewhat.  She flew in two days before Christmas, we did some shopping for Fred…more sweats, another pair of boots and I bought him a large, stuffed gorilla for his bedside plus put a family photo collage together for his wall.  But the night before Christmas Eve, Blanche I sat around talking and, having had time to think after she had told she would be coming East, I hesitantly told her I’d had a change of heart.  I wanted to go up to PA Christmas morning.  In fact, “I can’t NOT go…it’s Christmas.  I can’t stand to think of him with no visitors on Christmas whether or not he is even aware of it.  I am…and that’s enough for me..”  We had been very lucky, our twenty-five years as a military family…one one Christmas had we been seperated and that was when he was serving aboard ship…our daughter’s first Christmas.  He was somewhere off the coast of Africa, she and I were still in Scotland but preparing to come to the U.S. in two months.  There was one other that I was away from Fred and I our daughter, my first one in the US.  I was in hospital over Christmas, having given birth to our second child who was stillborn.  But Fred did spend most of that day with me.  Blanche grinned and said she just knew we would be going up there, even when I’d said we’d wait until the day after…and she was ready to go!  She even said she had every confidence in me…sounded to me that she had more in me than I had!

Christmas morning we loaded the car and were off by 5am.  Wasn’t sure if my little eatery was open so we prepared muffins, cheese and a thermos of coffee to take with us.  We’d had some rain and ice storms a few days before and when we got to Sidling Hill it was magnificent.  The rock faces were sheer ice, beautful icicle formations shimmering in the sun.  Perfect place to pull over for our breakfast picnic.  We arrived at our destination around eleven that morning.  The centre was so festive!  Christmas trees and lights everywhere, the residents dining room sparkling as a ballroom, tables beautifully set with seasonal decorations.  Each of the rooms, such as Fred’s were also decorated…lights, tiny trees, Santas on the bedside tables.  Fred was in his wheelchair as before and wearing a huge button on his sweatshirt…a photograph of him and a “visiting Santa”.  His Mom seemed just a little disappointed…she could see no change, nothing different, but that wasn’t quite so.

For the most part, he still looked as he had done a few weeks ago but, to me…something different about his eyes.  Not quite so much a blank stare…there was ‘something’ there but I couldn’t quite say what.  And of course his curly hair had begun to grow back.  Blanche and I laughed about that for she hadn’t noticed.  I guess because in some small way she was seeing the son she knew.  The surgical scar had healed, leaving an Interesting groove from one ear, up and over to the other but since this was his hairline it wasn’t so noticeable now.  He had no therapy that day, being a holiday so we spent a little time with him before they came to get him back to bed for his rest period.  When he fell asleep, off we went to the lunch room.  By the time we headed back to Fred’s room, I had decided to stop at the nurse’s desk to ask if we might walk him around, take him out of his room for a bit.  I’d never done so though I saw others walk their family member around.  They told me I was more than welcome to do this at any time and asked if I could manage both his chair and the stand on which they hung his feeding tubes, bag and pump.  Oh sure!  Ahem!  One little detail I forgot…Fred sat up high in his wheelchair plus he continued to have the framework and headrest behind him.  I couldn’t see over it at all!  No matter…I’d manage.  Blanche took the feeding stand, I had the wheelchair and off we went with her as my guide.  Down one hallway, across another…in to see George, up to see David and Carol, cut through the dining room.

Now, in the dining room there was a wall of floor to ceiling windows looking out on a quadrangle.  By those windows were comfy chairs, couch, coffee tables.  I thought it would be a nice place to sit and look out on the little fir trees in the quad.  The staff had decorated each of them with edible goodies for the birds who happened to have chosen that hour to enjoy their holiday meal.  All the while I was talking to Fred as usual, asking him if he’d like to sit here a while, was this okay…was he…and, of course, no response, no reaction.  I positioned his wheelchair in between his Mom and myself so we could both see him, talk to him and…if he was seeing, he could see not only  us but straight ahead out the large windows.  I had been watching a couple of birds hopping, cavorting around a seed bell, fussing with each other when I realised this was the first time Fred had been anywhere to look out, see the sky, the outdoors, birds, trees, in a very long time so, conversationally, I turned and said so to him…”…and it’s been a long while since you saw outdoors, hasn’t it?”  Blanche was sitting across from me, smiling and as I looked at my husband I saw him nod his head, ever so slightly…so slightly and fleeting, I thought I was surely the only one to have seen it (if I, indeed, had) but I heard Blanche gasp “Honey….!  Did….”  I looked at her nodding and asked if she saw ‘it’.  Asked her to describe what she saw and it was exactly as I had.  We both looked at Fred…face still expressionless…and I asked him if he nodded.  He slid his eyes toward me and nodded again….!!

“Stay with him, Mom…” I said…”I have to go get somebody, anybody!”  Found a nurse who paged one of
Fred’s team.  She came running and when I told her what we had seen she said she was going to make a couple of calls and would meet us back in the dining room.  A few minutes later here she came along with our social worker/counsellor.  These good people let me babble for a few minutes then I asked Fred a question similar to what I had earlier.  The briefest of nods was his response.  It wasn’t reflexive, it wasn’t spontaneous, it was a question asked and answered.  After a little over three months, a breakthrough!  And let me tell you that from seeing someone as still and pretty much lifeless as…dare I say it…a corpse then to see a finger twitch, head nod (and it was basically one of those nods we’ve all seen as someone is dropping off to sleep…just the head tip forward a tiny bit)…it is an awesome sight and feeling.

On our way up to the centre that morning Blanche and I had been talking about Fred, of course…and if he would ever come out of this state of nothingness.  If so, when…and how long, now, were they going to allow him to stay and be treated at the centre.  At one point I had said to her “Mom…it’s Christmas.  Maybe we will get a miracle…”.  And we just did.

Published in:body-mind-spirit, inspiration, life, society, Uncategorized |on January 4th, 2009 |2 Comments »

Thanks Given

Settled into a different schedule I would go up to Canonsburg toward the end of the week, stay a couple of days then return home.  Fred was also into a routine of sorts.  Each day, they would wheel him to his various therapies and, when I was there, I was encouraged to accompany him and his therapists.  This was something I really appreciated…not just being part of the process but the OJT. 
Well aware that no matter if or how much progress Fred would make, I knew at some point there would be his discharge and he was going home where he belonged.  It was in both our best interests that I  learn to do as much, learn as much as I possibly could, any chance given me.  As to his going home…yes, attempts to dissuade me from fulfilling that promise were constant.  My sister never did, Fred’s mother never did.  I realised that those who tried did so with the best of intention for me.  The two who didn’t also didn’t try for my sake as much as for a beloved brother-in-law and son…they knew me too well, I think, and knew there was no way I couldn’t NOT bring Fred home.  Twenty-five years in a naval career, twenty-six years married…we had been on the move all our lives, moving country to country, State to State.  We lived in a trailer, apartments, row houses, villas, bungalow.  Only the trailer had been ours to own.  The rest were either private rentals when military housing wasn’t available to us or military housing, itself.  We had come back to the US in 1985…to Maryland and Fort Meade where Fred would spend his twilight tour, prior to retirement.  Soon as we arrived we rented a rancher…that lasted about three weeks when another, two streets over, came up for sale and we decided to buy our first home.  It wasn’t a tough decision.  Given his military training and background Fred’s best opportunities for a second, civilian career,  would be where we now were or, most likely, D.C…about twenty-five miles away.  Not a bad commute, all things considered.  Another consideration was our daughter had married a young Scottish engineer and was living in Scotland.  For us to live on the East Coast was much more conducive to us being able to go back there for a visit or for them to visit us here.  If nothing else, it would cut the travel time and expenses plus, anything that would reduce flying time for me was a relief!  Being the first home we had ever bought, regardless of how long Fred might live or even how he would live his life out, he was going to do it in this home…his home.

It was somewhat painful watching them try to get him to eat food.  They did all the work but he could not chew, could not swallow yet this was something they explained had to be done.  Along with hisSpeech therapy (which was the feeding), PT, the recreational therapy, the hope was something would stir and awaken him…but we  saw no signs.  When I would take a few minutes break while Fred was in sleep mode, I’d go to the smoking lounge where I soon made a few friends.  One in particular was a woman no taller then myself (5’0″!)…name of Carol.  She was a little older than I and she visited her son, David, every day.  She lived about two hours north west of Pittsburgh.  David had been in a coma for nine years following a car accident, his vehicle being hit by a 18-wheel postal truck.  A year or two after David’s accident,  his Dad died from a heart attack and Carol now lived with her mother.  Along with learning their story, I had free access to the inspiration of this dedicated mother as well as imagine the heartbreak.  When our daughter died, when they couldn’t revive her, I raged against everything I knew and much I didn’t.  I bargained that if I could just have her in my world I didn’t care how…I would take care of her for the rest of my life and nothing would ever be too much.  I didn’t get the chance and, seeing Carol and David, I did wonder how I really would have coped were I too have been in Carol’s shoes.  Bad enough a husband, but one’s child?   No matter what, she was there at nine every day, worked with David, tended him mostly herself…her choice…and didn’t leave for the two hour ride home until after nine-thirty each night.  She had been doing this for all those years.  Often David would run fevers, have a seizure, get a cold with additional respiratory problems and Carol would just stay over, sleeping in a chair by his bed.  A couple of times she would come back with me to the townhouse…not strictly legitimate since families who lived within PA were excluded from these accomodations but if I had a place a to myself, the staff at the centre would turn a blind eye.  Myself, I was grateful for both the company and someone showing me the ropes from the family side of things.  And Carol was witty, pithy, strong.  I learned how to laugh again and it felt good she also inspired me to keep reaching inside and retrieving strengths I never knew I owned.  I learned how to swear!  And THAT, too. felt just fine…not something I craved doing or aspired to in my life but at that time,  when I would explode, it was a release of sorts.  Not that I was proud of it, either…it was what it was and I realised it was better than keeping things in.  As they say…”Better an empty house than a bad tenant…”.  Never in my life could I claim to know what ‘lonely” was.  I was a loner since childhood.  So was Fred so we were loners together, our favourite pastime, exercise, hobby came down to one thing…reading.  So while I had friends I never felt a drive to seek people or company out.  When friends would visit or we would visit them I thoroughly enjoyed them but I was just as happy on my own.  Often it was just Fred. the dogs and I or myself and the dogs since he was often off on business trips from two to six weeks.  I didn’t suffer boredom, either.  I can’t even say that this catastrophic change in our lives changed things for me in that respect but there were times when found I was glad of Carol’s company, when we would sometimes go to Denny’s down the highway for a 10pm breakfast before she headed home or sit and chat in the lounge at the centre until we were kindly and politely thrown out.

And then it was Thanksgiving.  I made my way up to Canonsburg for the weekly visit, not too concerned about the holiday.  Spent the day with Fred in his room…no therapies that day and he did have a tv, we had music,  I had a couple of books.  Lunch was our soup and sandwich but they did serve us turkey at dinner.  Had my coffee then the smokers amongst us toddled of to the smoking loung before we returned to the respective bedsides and calling it a day.  Fred was back in his bed, lying as still as he had done for weeks.  I had to chuckle…they had told me that first week they were going to have to get a bed extender for him.  When I asked why, they said it was because of his ‘long length…he’s what…6’6″?’  Uh…no.  Six feet…and they didn’t believe me.  And I could see why…for some reason, stretched out as he was, he was a long drink of water and every time I walked into his room, saw the bed extension and his feet almost hanging of the end of it, just couldn’t figure out how or why that was.  I checked to make sure the PEG was on and functioning…a slow drip, sixteen hours out of every twenty-four, talked to him a few minutes then leaned over the side-rails and began softly singing a song.  Even that didn’t stir him to wakefulness as it probably should have!  As I usually did at such times I watched his face carefully, then did a slow scan of his form…head to toe.  It was a two hour period when his splints needed to be off so his hands were palms down on the blanket, by his sides.  I continued singing and scanning.  Then I saw it…very briefly, lasting maybe a split second.  His index finger on the right hand moved!  It rose the barest fraction of an inch but it MOVED!  By itself!  Quickly I looked at Fred’s face…nothing changed, no expression, still in sleep mode.  Back to his hands I asked him to do it again…move his finger, thumb…anything!  Nope.  At that I ran down the hall to the nurse’s station to talk to his night team, his charge nurse.  The words were spilling out all around me…as I tried to calm down.  Finally, I managed to make them understand what I was trying to say.  The charge nurse grinned.  I asked her if I had just been seeing things.  She said she didn’t think so…two days earlier, Fred’s CNA had reported seeing the barest twitch.  They had checked it out, had the doctor, director and Fred’s social worker/counsellor in there but, no…they saw nothing, nothing to see.  Which is why they had said nothing to me until now…they wanted to be sure, needed to see it again (or something like it) but those on duty that night were thrilled that I had been the one to see it, myself.  There were two Coma Scales…Los Ranchos and Glasgow.  I had copies of both and while each was slightly different, Fred had been barely a one…that being the lowest, pretty much.  This night, he may just have moved up a half point!  A new beginning?  I didn’t know, they couldn’t say for sure.  But thanks WAS given.

Published in:body-mind-spirit, inspiration, life, society, Uncategorized |on January 3rd, 2009 |1 Comment »

Wringing Of Hands, Gnashing Of Teeth

I didn’t know what to do with myself.  November 7th, 1991, Fred had been admitted to the coma centre in Canonsburg, PA.  In the three weeks I’d had a driver’s licence I’d driven only as far as Baltimore then back home…approx. 25 miles.  To visit him now would be an almost six hour drive, roughly 350 miles away and somehow I had to pluck up the nerve to make that first journey.  I just didn’t know when although it had to be soon, for my peace of mind.  Meanwhile, I was a bit lost.  His company was still continuing to fight with the insurance company on my behalf, to get me some money that was due me but they were refusing to pay out.  So the bills were beginning to pile up…not quite full-blown panic point but close.  I’d spent every day, twelve hours each day of the last six weeks at his bedside and now…what?  At least it was good for our two dogs.  They had never been left as they were since September and we were all happy to spend some time together.  I did have some shopping to do.  They had asked me to bring…or send…clothes for Fred to wear as they would be getting him out of bed and dressed every day.  No more hospital gowns.  Sweat suits were their recommendation as they were much easier to put on and take off someone who could do nothing to help in dressing.  This would be different.  Neither of us ever wore sweat suits…or such as Reeboks.  They had also asked for those.  Every day we had put splints on his feet and hands/arms.  This was to prevent foot drop and his hands and arms curling into his body.  He had four hours with all four on, two with them off, throughout the day and night and now, during the two hours they would be off, boot-type Reebok’s or similar were preferred.  Well, I could do that this weekend and box up some supplies to mail to the centre for him.  Each day I called up there to see how he was…morning and night.  Those first few days I also used to notify family, friends, colleagues of Fred’s whereabouts now and his current condition…even though that didn’t change at all.  I was heartened to know those first few days that there was no change…I hadn’t expected a miracle, yet, but at least there was no deterioration in his new environment.

With the schedule and routine I’d been maintaining, I hadn’t seen any of our neighbours in quite some time and, of course, had no idea what was going on in their lives.  Then, one day, I saw our neighbour on the other side of us.  To my surprise, I learned that her husband…the George whose identity Fred had borrowed when first admitted to hospital!…was in hospital due to a serious stroke and was being transferred to a rehabilitation centre.  Guess where?  The same place where Fred now was.  She was making plans to drive up for a visit and asked if I would like to ride along.  Would I?  She’s lucky I didn’t go sit in her car for three days prior, just in case she forgot she asked me!  I called up there and reserved a town house for us.  She was only going to stay one night but that was fine by me, much better than nothing and on this trip I could pay a bit more attention to the route, without distractions.  We didn’t know each other all that well, being the kind of neighbour who was there to help when needed, converse about the weather and other idle chatter over the fence every so often.  I didn’t know she was a shopper to the nth. degree.  On the drive up to Canonsburg we stopped at every town, visited every mall while she was looking for a jacket to wear to some occasion she had to attend.  I swear…I thought she called it a ‘future jacket’ when she asked me to help find her one.  What on earth was a future jacket?  I knew blazers, bombers, sport coats, fur jackets…a future jacket?  So at each stop, I wandered around coat and jacket racks, sliding hangers, looking at tags and still wondering.  Future jacket?  Finally, she said we had to take a break for lunch and while so doing, I pleaded my ignorance and asked her just what I was helping her find.  Cut and style apparently didn’t matter to her…she said as much.  What then???  Finally, though a barrage of my questions and the best descriptions she could offer, she said “it’s a kind of PINK!”  Aha…FUSCHIA!!  But it still sounded like ‘future’.  We didn’t find one before we got to Canonsburg.  She said, then, that once she had seen George she was heading up to Pittsburgh to look around there and I was welcome to tag along.  I was quite happy, though, to stay put.

It was no small surprise when I walked into Fred’s room and found hims sitting in a wheelchair.  Just to see him sit upright was something and although his eyes were open, they were obviously sightless in a manner of speaking.  He had leg straps to keep them in place, a strap across his chest to keep him from tilting forward with a metal and foam headband to keep his head upright, not straining his neck.  As much as I knew this to be for his own betterment, particularly were he ever to come out of the coma, it broke my heart to see him like this.  But now they had his sweat suits and boots.  I’d brought his glasses…would be a long while before he ever had them on, no doubt, but they were there, waiting for him.  Toiletries…his favourites since the scent and everything else about them would be familiar to him and useful in his therapies and stimuli.  I had the list of his likes and dislikes, loves and hates in food, smells, music, textures.  I’d brought  more cassettes along with a boombox we had had at home.  One of the tapes was operatic arias and his CNA asked me if he really liked that sort of music.  “No…he loathes it and would hate when I played it at home…” I laughed.  If anything would jolt him, that just might!  Feed him greens…broccoli, brussels sprouts, cabbage, spinach…he hated those (even though I doubt he had ever eaten any!).  Corn he loved, eggs he adored along with bacon;  potatoes.  He hated the smell of fish…any fish…and would not eat it, either.  His aftershave…the one he preferred and used daily…Old Spice.  Music…most he did like (except opera), Country was his favourite.  He loved cotton, hated wool for it scratched and itched him.  I spent the day mostly with Fred but going to visit George, also.  Next day, we returned home.  Confidant or not, I made my accomodation reservation for the next week…two days and hoping I’d find someone to check on the dogs without putting them out, too much.  I just knew there was no way I could NOT go home without knowing…and telling Fred, whether he heard me or not…I’d be back in a few days.

I figured I’d make my first trip up there on a Thursday, hoping to avoid the weekend traffic of people out and about for day trips, family visits etc.  I also thought it was probably easier to reserve a town house on a weekday as most folk would likely visit their family member on weekends.  Thursday I was up at five, on the road by 6a.m meaning I should get there around noon.  That would give me until 9pm that night to be at the centre then the next day until around two.  I wanted to do most of the first round-trip, at least, in daylight so I’d know where I got lost when I did.  And I was pretty sure I would!  I was already pretty savvy with a computer…thanks to Fred.  He was a computer specialist and we’d already had a pc for a number of years.  The internet wasn’t so big, yet.  We had had Prodigy…don’t laugh!  That was many moons ago!  And I bought a trip route programme which helped me map out the best way to get where I wanted to be.  Friends familiar with that part of the country suggested Penn Turnpike.  I remembered having been on it as a passenger once and never wanted to repeat that nightmare, least of all as an inexperienced driver.  And then telling me it was the route favoured by truck drivers clinched it for me.  Not on my, Fred’s or anybody else’s life was I pitting my little Camry and newly acquired skills against eighteen wheels.  The route I had mapped out was I-68…no-one I knew knew of it.  Apparently a new interstate.  It winds across Maryland to Morgantown, WVA, where I would veer right and head north towards Pittsburgh.  Canonsburgh was 21 miles south of Pittsburgh.   At 6am it wasn’t bad driving.  A little more nerve-wracking as I reached Hagerstown but, eventually I was driving a road I learned to love.  The scenery was calming and quite beautiful, not too much traffic at all.  As I approached the town of Hancock I decided I should take a break, head into town and get a cup of coffee.  Found a homey little bakery-cum-restaurant that became my “break” point on all future trips.  Of course, when I got back on the road again I found I was heading in the wrong direction…back from whence I’d come.  Managed to right myself and headed up this very long, very steep hill…Sidling Hill…where the road was cut between two huge rock-faces.  There was a pull off there, had a little museum showing how they had built the  road, cut the rock etc.  I didn’t visit the museum but I did pull off to take a look at the view and it was spectacular.  So far, so good.  Back on the road and on my way.  I was feeling a little more confidant, too…happily surprised that “I am doing this!  Who’d a thunk it?”  And at that point there was great comfort in knowing not “if” or “when” but that I would be making this journey every week.  So began a new routine.

Published in:body-mind-spirit, inspiration, life, Uncategorized |on January 2nd, 2009 |2 Comments »

All Systems Go!

The overnight duffle packed, dogs care in hand, it’s 7a.m. and I’m pacing the kitchen, waiting for the phone to ring. Totally sleepless night and ominous looking day…very overcast and just cold enough for snow.  I had no idea where we were going, only a rough idea of how we’d get there and enough time on my hands to begin wondering how in the world I’d ever be able to drive such distance alone, being a novice driver.  I had called no-one…not Blanche nor my sister, no friend until I was sure this placement had been secured and covered by CHAMPUS.  A full pot of coffee…and probably full pack of cigarettes..later, the phone rang.  “Are you read to hit the road?  We got a verbal, all systems go…tell me how to get to your place and give me twenty minutes…”  The woman from last night sounding as excited as I was.  Half-an-hour later we were on our way to Baltimore, an ambulance having been ordered to meet us there.  When we arrived, first hiccup…the EMTs assigned to transport us said they couldn’t do it.  Fred was on oxygen, they did not carry enough for his needs and a five hour drive.  Oh, no…you’re not doing this to me now, I thought.  “I don’t believe he needs it to be continually running,” I said.  “I’ve seen him without while they were bathing him…let me find a doctor…”  Just then I spotted Dr. Patrick coming down the hall.  He wasn’t one of Fred’s doctors but familiar with his case.  Calling to him to wait, I asked him how dependent Fred was on oxygen and told him why I asked.  He said he wasn’t…maybe five percent but they had him connected because it was a purer source.  By then he had joined our little group outside Fred’s room and he assured the EMTs there should be no problem taking Fred off the oxygen for this journey.  What they normally would carry would suffice.  Time…what was the time?  For they were now telling me the ambulance was on it’s way to take Fred to the convalescent home in the city.  Panicking, I’m looking from one to the other, to two others…somebody decide!  Our EMTs suddenly said, “Let’s go…” and in the went to get Fred on the gurney and down to the ambulance, me running behind them.  As we got to the elevator, the woman from the night before, now I’m considering my guardian angel, yelled “Nancy…did you eat breakfast…or anything, today?”  I did not…she reaches in her purse and tosses me a banana!  I couldn’t help thinking how appropos…I was already feeling like the organ-grinder’s monkey going through his paces!  “Eat this..potassium!”  And…awaaayyyy we went.  I sat up front with the driver, noticing the skies becoming darker.  All was quiet in back…Fred wasn’t choking, having any respiratory difficult…only a few minutes out of the city and so far so good.

It wasn’t long before the snow started and it was bitterly cold.  I kept asking if they thought my husband was warm enough.  The guy in back assured me he was doing fine.  Then about an hour later I heard choking and gagging.  “Oh, God…I’m killing him with this travelling!”   I have to be honest…I had no idea what all this moving, travel, no oxygen would do to Fred.  At best, all I could think was I’m trying to do the best I can for him.  Maybe I WAS being desperate and, I supposed, there was a possibility my insistance on this might just be his end…in which case, I knew I did my best which was better than doing nothing.  If I did nothing at all but let hospitals, nursing homes, social workers tell me what THEY were going to do, Fred would never be any better than how he was.  Maybe what I was doing was risky but what, really, did Fred have to lose?  His life?  At the moment and for weeks now, what was that worth to him?  Trying to look in back to see what was going on all I could hear was the gurgling and gagging…but it wasn’t as bad as I had feared.  He had gagged and begun to throw up but the EMT assured me h had it under control and, within a few minutes, all was well again.  I had learned that we should arrive at our destination around 6pm (depending upon how well the weather would hold up) so now I had time to think, plan (Plan? What, exactly?!), raise some hope, be curious as to what they would or could do for Fred, if anything.  At the same time I was also wondering where I was going to stay overnight or, if I left tonight how in the world I was going to get home.  Probably bus or train but I had no idea from where.  Nothing but questions, no answers and I didn’t care.  Think that was when I finally learned to live in the moment.

Frederick, MD…Deep Creek Lake, Cumberland…Morgantown, WVA???  Where was I?  Totally unfamiliar with this part of the State but the beauty of it didn’t escape me.  For the first time in a long while, I was at least enjoying something.  Just a few minutes after 6pm we rolled up to the entrance of the centre.  New Medico was it’s name…though not any longer as it was bought out a few years later.  The director and several nurses were waiting to greet and welcome us.  Immediately they wheeled Fred off to get him comfortable and settled, I’d get to see him shortly.  Now the process was to be explained to me.  First, they were going to begin immediately, weaning him off the trache.  They said coma patients always seemed to do better when that was successful and they were breathing on their own.  Second, there would be medication changes…the first would be changing the Phenobaritol to something else…it was “highly addictive and if he should recover this could be a problem…”.  They had other anti-convulsives in mind.  He would be assigned his own nursing team, each team having a very few patients for whom they alone were responsible, giving them time to get to know their patient very well and vice versa.   They would immediately begin therapies…Physio, Recreational and Speech.  I have to confess the last two had me wondering how they would do that with someone who just could not respond but…they were the professionals and, at the very least, were willing to do something.  He asked me if I had any questions so far…none, at least not pertaining to Fred’s care.  It did occur to me that we had not discussed cost, insurance, payment, nothing financial but decided I didn’t want to worry about that just yet.  I knew CHAMPUS was involved and, when necessary, we’d go from there.  So I asked if there were any hotels in the area…having noticed not much of anything within a few miles of the centre.  Very much relieved and surprised, I was told I didn’t need one.  They were providing accomodation, would have a cab take me there when I was ready to leave that evening and, if I would let them know at what time I wanted to return home next day, they would arrange…and pay for…a flight out of Pittsburgh to BWI.  Wow!!!  Suddenly I felt the taughtness leave my body and mind, Pfffffffftttttttt as many breaths I’d been holding escaped like air from a balloon.  “Now…are you hungry?  We have a family room where we can get you a bowl of soup, sandwich, some dessert and coffee…”  For the first time in weeks, I was ravenous and, of course, that was the best soup and sandwich I’d ever had!  They did everything for my comfort…better yet, they did everything in short order for Fred’s and when I’d finished eating they told me he was settled and would take me to his room.  As we walked up a hallway, a young man in scrubs came towards us and stopped.  Introducing himself, he then said he wanted to let me know that when I went in to see Fred I’d notice something changed and, possibly, a little blood.  He was a respiratory tech and had changed the trache to a different canula…which might cause a little bleeding…and this was the beginning of the weaning, hopefully closure, of the trache.  This process would take a few days but not to be worrying.  The room Fred was in was very pleasant…wallpapered and painted in soft hues, lamps…I noticed a cork bulletin board on the wall by his bed and was told this was for photographs, cards, notes from friends, anything which could be tacked up there to both brighten his space and help with cognition when or if that day should come.  “Bring stuffed animals, favourite music, fragrances he liked…tomorrow we’ll get a list of his favourite foods and those he just didn’t like at all, anything you can tell us about his personality will be helpful…”  When the team  left a few minutes later I could only sit on the chair, take Fred’s hand and weep.  Somebody listened, somebody is willing to try.

An hour later I was ready to go get some sleep…little did I know that it would finally be the best sleep I’d had in weeks, if not the only.  The cab they had arranged took me the couple or so miles to Canonsburg proper, stopping in front of a row house.  I went to pay the driver and he refused…also taken care of already.  I’d been given a key as I was leaving, couldn’t get the door unlocked fast enough and when I entered…more surprises.  Nicely appointed living area with couches, lamps, rugs.  A tv smack in the middle of a large wall unit, radio. Into the kitchen I investigated cupboards which had dishes for any meal, a few packets, packages, boxes of such as sugar, cereals, seasonings.  The fridge contained a fresh carton of juice, ditto milk, butter, eggs, bread, some yoghurt cups, jams, jelly and peanut butter.  Upstairs, two fully furnished bedrooms, each with twin beds, lamps, clock radios plus, of course, bathroom.  The cab driver had given me his card for next morning.  When I was ready to go out to the centre, I was to call him.  I did so around 9am, given that’s when visiting hours began there.

Fred had had a good night and they were very pleased that, unlike some, he did not have any adverse reaction to the journey.  Not even an elevation in BP which they had said to expect.  This was good…and, of course, I wasn’t daft enough to start expecting miracles.  Yet.  I caught my flight home later that day…yes, a bit concerned about Fred being so far away should there be an emergency and also giving great thought as to how I was now going to get up there to see him.  Among the paperwork I’d been given were details on visiting.  I could visit him ten days a month and, as long as I called to let them know, they would have one of their townhomes reserved for me.  These were shared facilities for the families of patients who lived distances away.  Sometimes, I heard, I would have one of the homes to myself, sometimes having to share with two others but if I wanted to bring a relative or friend with me and space was available, they would also be accomodated.  Things such as eggs, cheese, bread, milk, juice would always be stocked in the fridge for breakfasts or a quick evening meal but we could make anything we wished and, often, we would find the previous guest would leave bacon, sausage, ice-cream…whatever they had bought but did not eat.  At the centre, they strongly encouraged families to be very involved in the care and therapy sessions when visiting so we were welcome to be there from 9 until 9…and if there was a crisis, as long as we wished.  There was a family lounge, a smoking room, the little cafeteria where we would get coffee any time of the day or night…in fact, everything was there to make a pot.  Sign up sheets were posted each day, put your name on the list for lunch and lunch would be provided…soup and a sandwich.  If we were staying on, likewise for dinner…name on the list and dinner would appear for us at 6pm.  There were no additional charges for those services.  Once a month, we could take advantage of a flight from wherever we lived to Pittsburgh, paid for us.  I hate flying…figured I’d never use that service but now I had to figure out the route and find the courage to get behind the wheel of my car and just do it.

Published in:body-mind-spirit, inspiration, life, society, Uncategorized |on December 31st, 2008 |Comments Off on All Systems Go!

Happy Birthday To Me!

October, 23…had more than usual to attend to before getting to the hospital that day and, when I arrived there at noon the social worker assigned to us was waiting for me.  No sooner had we wished me a good morning he quickly followed that by telling me Quality Control were serious about my husband being moved…asap.  We had already discussed this…he and I…so I was aware that they insisted Fred required being in a skilled nursing centre due to the PEG, trache and the care he would need.  Baltimore was 25 miles from where we lived and though it was only a guess, seemed to me that once placed in a nursing home there would be nothing of stimuli for this man…just left in a bed, with two tubes and basic hygiene.  If he was never going to emerge from this silent, lifeless world he now inhabited, being practical I knew it just wasn’t possible for me to stay by his bedside twelve hours a day in that environment.  We had dogs, I had chores, would likely have to return to work in an attempt to keep head above water.  While 25 miles is not a long distance by any stretch of the imagination, I also knew that, somehow, with all the other things needing taken care of, I would be up there all I could and yet find myself making period trips daily to see to our dogs, if nothing else.  I rebelled.  I wanted to see more being done at UMMS before they just cast Fred aside.  That afternoon the discussion between Jim and I went on and on.  I could see he was only doing his job, what he was asked to do…and wasn’t comfortable doing it.  Still…I was not going to budge from MY ‘job’ and what I had to either.  As daylight was waning, standing by Fred’s bedside, Jim asked “THE” question;  how long was I prepared to leave my husband in this condition.  For starters, I didn’t want to leave him in ‘this condition’ but how could I…we..improve that?  Jim had no answer so, again, he asked the question.  I have to say I was annoyed…nursing staff had said from almost the beginning that hearing was the last to go and I certainly didn’t want my husband hearing the question, let alone any answer so at that moment I put a tape on, headphones on his ears and told Jim that from then on, if he was going to discuss prognosis, he would do it outside the room.  Given my knowledge of Fred’s wishes, throw in my own unfathomable hopes, I then answered him, told him no less than a year, no more than three.  If he never was any better than he now was, I didn’t believe I could stand by doing nothing, watching him curl up into a 48yr. old foetus.  From that day forward, Jim met with me every day, usually to enquire about any progress being made in finding a facility for my husband.  There was none.  I knew there was none he needed, nearer home…and I wasn’t looking in Baltimore or it’s vicinity.

Days went on, I was tired, frustrated, scared.  About a week later Jim met me with the news that I had an appointment with a nearby nursing home…less than two blocks away from the hospital.  The appointment was for two hours, to meet with all staffing departments, have the grand tour, discuss financial arrangements.  My heart fell…now I was beginning to feel I was losing control of our situation and wondering how I could avert this.  But I kept the appointment, showed up at 2pm. as instructed.  First person with whom I met was the Social Director who, in the course of twenty minutes, explained all this facility offered to their residents.  Fine…if they had mobility and cognisance of some sort.  #1  representative obviously hadn’t done HER homework on this prospective resident.  Soon she left me while going in search of the financial director.  She appeared, spent one hour and forty minutes with me by the end of which what I knew was this;  $3000 a month and Medicaid or Medicare would cover most of it but I’d probably have to pay something.  If/when my husband needed to be hospitalised for any reason I, myself, would then be responsible for ‘keeping his bed open for him’ at $100 a night.  What I did know was my husband’s general health at that time was not stable…he continued to spike fevers for unknown reasons, if his PEG site were to be infected or the PEG came out, he would be back in hospital.  It was highly likely that, at least for a time, besides the payment coming from social services, I would have to find close to $1,000 a month for additional care.  With having to work to keep a roof over my head, pay a mortgage and even with his military pension, there was no way I could see of being able to do this.  I walked out without signing anything, went back to the hospital and told Jim, “Not only no but hell, no!”  In talking with relatives of another patient that same day, it was suggested that I might have to consider doing what others before me had done.  Divorce my husband…and, I guess, basically leave him to the State as penniless.  Not a chance.  And, aside from all that, from the time talks had begun with Quality Control and Jim, I had stated that the only place Fred would be going from hospital was home.  This created some serious arguments when they told me I could not take him home in his condition…they would not allow me.  Really?  Then, the young woman who was in the medically-induced coma, word spread that the family were being offered a placement in a coma-stim centre where they would expend all efforts…short-term basis…to bring her out of it.  I asked why this had not been offered to us.  The reason given was his insurance would not cover the expense.  I mean, while I balked at a regular nursing home I had no problem allowing his transfer to a facility which would work toward trying to bring him out of the coma with various methods.  It wasn’t being done at UMMS, it would not be done in a nursing home…of that I had already been assured.

Finally, about ten days later and just as I was going down to the cafeteria for some coffee, Fred’s surgeon was on the NICU floor and approached me.  He wanted to talk to me, next day.  Told me that as soon as I arrived to ask for him…the staff would page him and we would meet in his office.  He didn’t elaborate, I didn’t pursue questioning and I guess the fear must have shown for he patted my shoulder, saying it would be okay.  We did meet, next day, soon as I arrived…it was a Wednesday and I remember the weather was as miserable as my spirits.  Thank heavens for anger…that was about all that was keeping me going at this juncture.   Dr. Rigamonte had brought in two Quality Control staffers, we talked and I made it clear how I felt, what I believed.  They left and the surgeon and I continued to talk, he asking me what I would do if Fred never regained consciousness.  “I’m taking him home…”  Again, but in a more gentle fashion, he said I couldn’t do that, what if this or that happened.  “We’ll take that chance…how much worse off will he be than he is now?”  Finally, the meeting came to an end and, once again, Dr. Rigamonte said it would be ‘okay’.  I hadn’t seen Fred yet, that day, and immediately made for his room.  Something not quite right…his bedcovers were in disarray, things out of place and I knew…unless some miracle had happened…he didn’t do it so off I went to the nurses’ station.  There was Jim, needing to talk to me.  Before I had a chance to say a word he told me Fred was being moved at noon, next day.  Being transferred to a Jewish Convalescent and Nursing home “whether you agree or not…”  His words.  I was floored…how could they do this?  I was then told if I was at the hospital already I could follow the ambulance to the facility, if not I would have to find it on my own and, no…I could not ride up with him.  I was shaking…with fear, anger, mostly fear.  And just then, a woman appeared at the desk, asking where she could find Mrs. Cleveland.  Jim indicated me as I turned to tell her I was she.  She introduced herself then asked if I could step out by the elevators “someone wants to talk to you about your husband…”.  I had no idea who, what or why.

I followed her to be faced with young-ish man, kind face offering a smile and handshake as he introduced himself.  His name meant nothing to me but when he followed it with the name of his organization I could feel my heart lift.  He was director of the coma-stim facility we had been refused.  He was a friend of Dr. Rigamonte’s…as I gathered…who had asked him to come to the hospital to assess Fred’s condition and determine if the centre would be of any value to him.  I could only assume he had been the one at Fred’s bed while I was in the earlier meeting.  Later, I surmised that perhaps this was why  the surgeon had called this meeting for that day and hour, along with the Quality Control staffers.  We were all out of the way while his friend was making a decision and I suppose, had it not been a positive one, I might never even have known or discovered he had been there.  I don’t know…and I didn’t care.  This young man went on to explain his facility to me, the services available, the treatments they would use.  He also made it clear that “I don’t have a crystal ball so I can’t tell you we can bring your husband out of this.  All I can say is we are willing to try everything we have.  If, by the end of two-three months there is no change then we would discharge him.  Are you willing to accept this?”  Am I??  The only question I had was how would I pay for it…my insurance, I’d been told, would not cover this sort of long term care.  He said he was under the impression that my husband was retired military and eligible for CHAMPUS.  Yes, he was…and I was told that his facility accepted CHAMPUS.  There would likely be no problem, all they had to do was get their “yes” to the move.  Then I began to worry…told him that the hospital were moving my husband next day at noon…how could we do this in that time?  He checked the time, told his assistant to go make a call and get a verbal answer for now, paperwork would be done later then he turned to me, saying we had to do this next morning if at all possible…once they moved Fred it would be more difficult to get an agreement to move him again.  The woman returned saying she did not get the answer but had been assured someone would get back to her by 9a.m next morning.  They looked at me…”Can you go home and pack a bag?  Soon as I hear from them I will call to let you know I’m on my way to pick you up, bring you here, and you will travel up to Canonsburg in the ambulance with your husband..”  I think, before the woman ended her sentence I was ready to push elevator buttons and be on my way.  But first, I had to go back in and tell Fred.

Published in:life, Uncategorized |on December 31st, 2008 |1 Comment »

Me, Myself and I

Well, not really.  I had our two dogs for company when I was home and glad of them.  Days became even more routine than previously. Up in the morning, see to the dogs and then off to the hospital.  Sometimes I would accept the neighbour’s help in letting the dogs out and seeing to their feeding but more often I’d take a couple of hours to drive home and see to them myself…I just felt so badly about leaving them every day for so long a time.  Blanche did go home, I continued my daily sojourn to the park, feeding the little squirrel who had become my faithful companion (well…as long as I showed up with his bag of nuts!).  Fred had ups and downs..spiking fevers, breaking them, yawning, sneezing, eyes open, eyes closed.  All the while I was at his bedside I’d hold his hand, stroke his arm, talk to him, brought tapes of the dogs barking, phone ringing and me answering it, anything I thought might strike a chord, somewhere.  One thing I did continue to see was his BP would change soon as I touched him, eyes on the monitors.  I don’t know why but somehow I believed he knew someone was there, not surgeons, not nursing staff but, regardless, we were all playing a waiting game.

A couple of days after he had been admitted…think it was the day of his surgery…a young wife and mother had been brought in.  She was fully aware but had an opthalmic aneurysm.  They operated, she came through the surgery but something not quite right so it was deemed best that they induce a coma to rest her brain and body, to be brought out of it within a few days.  Sadly, they could not bring her out of it.  Her parents, her husband, spent the same hours waiting and we at least all had some companionship.  After a couple of weeks, they began talking to both families about where we should go next…that would be a long-term nursing facility.  I rebelled.  Incredible or not, he had been conscious when he was brought in.  Now he wasn’t and, by this time, I had secured enough information on coma treatment to be frustrated.  As much time as I spent at his bedside, I didn’t see the stimuli being used…the scents, touch.  Someone would come to his bedside and ask him a couple of questions which he never did answer or acknowledge.  It seemed to lack conscience to me that they expended all of their skills to save his life when it appeared they had only prolonged his death.   No, I was not releasing him to a nursing home until all avenues…and some extended time…had been explored.  I’d always been a very quiet, passive person.  Any problem needing a strong, authoratative voice Fred had handled…for both of us.  Always my advocate, someone had to be his.  That was me by default.  And it was amazing to me how easily I slipped into that role after forty years of believing I couldn’t do it.  Probably just a case of fighting for the rights and well-being of one who cannot do so for him or her self.  Deep seated anger at the turn life had taken helped.  This young woman’s family was going through similar turmoil…probably worse since it was both parents and husband, not always on the same page.  One thing which had been so supportive and encouraging to me was a talk Blanche and I had had, just a few days after her arrival.  I was hesitant to broach the subject but, at least for my peace of mind, it had to be done.  I asked her for her thoughts on if the day should come when someone might ask me to make a very crucial decision.  No-one had suggested ‘pulling the plugs’…yet.  Hints had come that the day may arrive but not so far.  Fred and I had already discussed such a situation and both of us were of the same mind.  Not to be kept alive by machinery, feeding tubes and certainly not if either of us were in a vegatative state.  We had not formalized our wishes in writing only trusting in each other to carry out our respective wishes.  I did not tell Blanche this, at that time.  I needed her honest feelings and then go from there, trying to respect her place as his mother while effecting his wishes.  And she was stuck.  As a mother she had no desire to lose her child…and no matter how old our offspring are, they are still our babies, be they 8 or 48.  Having lost our only surviving child just four years previously, I could imagine her difficulty.  Further, I well-remembered thinking that when my daughter died I would have given the world and everything in it to have her here, regardless of her condition.  Selfish, yes…but never ready to give her up.  She did ask me what my thoughts were.  I told her of the conversation Fred and I had had in the past and that I would really like to honour that if and when called upon but did add that her, being his mother, I would be attentive to her needs as much as possible.  This poor woman couldn’t have been more supportive, telling me she knew I would only ever want what was best for “Freddie”, always had done so and whatever I decided was good enough for her.  At that point I had no idea what I would do now such a decision was highly probable in our future…just hoping I could live with whatever the ‘right one’ would be.

I found one of my most major hurdles were finances.  Fred’s company offered long-term disability coverage.  He had chosen to pay more for the coverage which would become effective immediately in the case of any injury or disability rather than one which required a waiting period.  His HR office had been exemplary, getting the paperwork to me within a couple of days of his being stricken.  Likewise, I had completed it, immediately, and got it back to then.  Then the insurance company decided they were not going to pay.  Finally, I was able to talk to them myself rather than through HR.  HR had been very good, done just about all they could, to no avail.  Came the day I talked to a rep from Aetna who told me, in no uncertain terms, they were not going to make payment without my husband’s signature.  Excuse me??  Did they read the application, the diagnosis, the prognosis?  Yes…they had…and they still would not budge.  I asked them to check on his life insurance coverage with them and tell me who the beneficiary was, there.  They read out my name and relationship.  I asked if that should not be sufficient and my answer was…”No…he isn’t dead.  Just in a coma…”  Just??  So how does one get a comatose patient to sign papers, to do anything?  Apparently that was my problem to solve and the only means available was I had to become my husband’s guardian.  I spent days getting the information to do this, much as it went against the grain to do so.  I did not want to be his guardian on an emotional level.  I did not want to think, let alone believe, he would never again be the logical, super-intelligent, practical man he always had been.  No matter…I had no choice it seemed.  At the same time, legally becoming his guardian was to cost me upwards of $1500 which I did not have.  In fact, I had no income other than his Navy pension which, thank God, was on direct deposit to our bank.  That was less than $1,000 a month, our mortgage was a little over $800.  Not to mention every other little bill.  Frugality made no difference here.  I honestly had no idea what I was to do.  His company HR continued to keep in touch so eventually they learned…to their horror…the situation I was in with the insurance company.  They attempted to talk to them, I talked to them some more until, finally, the HR office had one resource left that might help.  They had their corporate attorney contact Aetna to ask if they could make a one time payment of some of the money already past due me.  The answer, initially, was no.  Of course other things were going on…another of my neighbours, an older man who was involved with Veteran’s Affairs…suggested that I go talk to the VA as there may be some help coming from that quarter.  I made the appointment, decided I probably should gather all of my husband’s military documentation including his medical record, before I went.  I knew he had hearing loss attributable to his navy career, also the BP was considered the same since he only acquired HBP some years after enlisting and while he was still on active duty.  He could have filed with the VA before getting so sick for both of them but we both believed they were minor enough not to extract any more money from their coffers while we could afford to tend to them ourselves.

So, one night I thought I probably should go through his medical records before talking to the VA.  I didn’t know if there was anything which could be helpful, I didn’t have a clue as to what I was dealing with but I dug it out and began to read.  I suppose one could say I lucked out…we both lucked out although that ‘luck’ wasn’t exactly a word I’d use during those weeks.  As with all career military members, they are required to undergo a thorough physical before being retired.  Presumably to find everything that could be a problem then or later, also so noting by absence something that was not attributable to a military career or service.  The very first page contained the notations from that physical.  It was written that he had an aneurysm in the brain and “we should conduct CAT-Scans to make determination and follow…”  I looked…all the way back to when he had his first medical notation when he began his career…25yrs. worth.  Nothing.  No-one had followed through, nothing more had been done and his new-ish, retirement medical records contained nothing about aneurysm.  I made copies and I turned the paperwork into the VA.  If any help was to come from them I knew it was not going to be immediate, if at all.  Social Security disability also had to be filed for which, after two months, I did.  That would take six months, I was told.

Along came my birthday, October 23.   By then, Fred had been transferred into a two-bed room.  All machines had been removed though he continued to be hooked up to oxygen and, of course, dependent on the PEG for sustenance and fluids.  No change, otherwise.  I had noticed…and mentioned to the nursing staff…that when I would now enter his room and call out his name, ask how he was doing, his eyes would actually open.  No turn of the head, nothing else…but the eyes would flick open.  That was a sign of sorts, yes?  No, they told me.  Spontaneous reflex or just coincidence.  One afternoon I had brought some ice into his room, took a cube and ran it down his side…from under his arm to his hip.  He flexed!  I next did it with my fingers…nothing.  Again with an ice-cube…flexed.  Off to the nurses’ station to tell, ask.  Nope…reflex.  I was beginning to question what I knew of our senses.  If one could respond obviously to one touch, yet not another…was it simply reflex or was he feeling the difference?  And yet I’d periodically take my keys and run them along the sole of his feet, up his legs…nothing.  One evening, the wife of friends of ours had accompanied me to visit Fred.  While she had been in the waiting room she had overheard another family talk about bringing their Holy Water to use on their family member.  Viola remembered that when her parents had visited from Italy, a couple of years ago, they had brought a vial of Holy Water blessed by the Pope when they had taken a weekend in the Vatican City.  She asked if she could bring it next day.  I’m not Catholic, not religious but not proud or stubborn enough to refuse help from any quarter and it was a generous gesture.  Next afternoon, each of us on either side of Fred’s bed, she gets the vial out of her purse.  We looked at each other, nodded and she was ready to annoint Fred.  I simply stood holding his hand and watching him very closely…for what, I had no idea.  She touched the water to his chest, his arms, his legs, throat, heart and, lastly, across his forehead.  And I almost fell backwards through the room window when Fred’s eyes shot open.  I mean they shot open and wide-eyed…as did mine!  Viola could only yell, “Oh, Jesus!”…and it was not an epithet.  Personally, I actually thought it was his last physical act before death.  We had killed him for God’s sake!   Took us a few minutes of watching, waiting, to realise we had not…and trust me, this was an experiment I had no intention of relating to the nursing staff!  Oddly enough, Viola nor I said word one to each other, just carried on with our visit for a few more minutes and then left to head home.  It was only as we were out of the hospital, crossing busy evening hour Green Street traffic, that I came unglued, began laughing hysterically that I could not even walk, stopped right in the middle of the roadway.  She had to drag me to the opposite kerb.  How, I don’t know for she was as bad as I was.  We plunked down on the kerb until every bit of nonsense was out of us.  She admitted she thought she had killed Fred, I told her I was sure she had, both confessed that each was afraid to tell the other.  But we had never seen anyone’s eyes fly open so hard or fast…and the worst was Fred’s eyes just staring, coldly into nothing.

The Holy Water stayed home.

Published in:body-mind-spirit, humour, life, Uncategorized |on December 28th, 2008 |Comments Off on Me, Myself and I