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 »

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