Archive for the 'society' Category

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 »

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!