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 »

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