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 »

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