Respite

I think I've reached a watershed moment. I came to a decision tonight and whether I ever follow through remains to be seen, but I think the first step has been taken and perhaps that will make the second one easier.

It was an ordinary day which is both good and bad. Good because there were no surprises and the day unfolded as it always does: get Michael up in the morning, clean him, dress him and feed him all before his medication runs out and he needs to fall back to sleep until lunch. Some mornings it's a race to beat the medication which can last only a few minutes before he succumbs to a near-comatose state for the rest of the morning. Today my caregiver only had an hour to spare early this morning which I greedily grabbed to get out and walk the dogs, so I had even less time to rush about getting Michael up and fed before I set out. The rest of the day was ordinary too, lots of sleep and television, a short walk, a few minutes outside while Michael valiantly attempted to do some yard work before his meds wore off - 10 minutes - but it was so nice to see him enjoying the outdoors. It was a quiet, uneventful day.

But it was a quiet, uneventful day and sometimes that is the problem. Today I had a lot of domestic worries floating around in my brain, nothing serious but as the day wore on and I had so much time to think, these problems loomed larger. I gave them far more attention than they merit. By mid-evening my worries escalated to a near frenzy and I found myself experiencing a rare panic attack. Now, as panic attacks go it didn't hold a candle to Michael's and I do him a disservice even calling my experience by the same name but it did feel like panic. I parked Michael in front of a hockey game and took myself off for a restorative, calming hot bath to shed a few quiet tears and feel sorry for myself, all the while leaving the door open so I could hear Michael, just in case. While there I came to a conclusion: I need a break.

Michael came home from the hospital November 27 and since then, except for a few hours a week of respite, for which I am extremely grateful, I have been at this job incessantly; every morning, evening and all but a few daytime hours. And during those hours we are usually alone together in this big house. I am happy to have two cheerful dogs who seem very pleased to have me chat away to them which is good because that's how isolating this job is; I'm reduced to conversing with my dogs. And they are real one-way conversations I have, something that is both laughable and disturbing!

I have been reluctant to even consider the possibility of taking an evening off because night can be a difficult time for Michael. Evening is when he is most likely to have a mental health melt-down and the night hours themselves can be very troublesome and disturbing. My fear is that by not being here if he has an attack, it might be a more severe one and if he's in institutional respite care I am nearly certain he will go over the edge because that is what has happened every time he has been hospitalized. It is not ego speaking when I say I have so far been the only person to be able to come close to calming his extreme agitations. It is a very severe and dangerous situation and I worry that if I go away for a night or two I will come back to a worsened condition than I am dealing with at present which, after months of adjusting to a heavy neuroleptic drug to control his psychosis, is fairly calm. Do I really want to rock the boat?

But tonight was a rare event for me. Perhaps four straight months of intensive care is finally wearing me down and that's on top of several years of moderate to intensive care. I think I am processing what I already know, that to not take a break from this job could be disastrous to my health. And what's disastrous for my health is disastrous for Michael's health.

So I'm thinking about a single night in a respite care facility for him, and for me, a night on my own. If I stay at home then I can abort the mission if he gets terribly out of control but if it works and he's okay, then I might pluck up my courage and try a night away somewhere. I'd really love to go to my daughter's university graduation in June, a simple overnight trip alone but a near-impossibility with Michael. Then if that works perhaps I'd have the courage to attempt a visit to other offspring in Toronto for a whole weekend.

I'm excited thinking about the possibilities and that is a powerful motivator. But one step at a time and tomorrow I start researching respite care facilities.

Sleepless

It's 1:30 a.m. and I am still awake. This causes me some anxiety because my day could begin very early or my sleep be very disturbed depending on Michael's night. But I did it to myself today. I was hell-bent on getting the income tax forms completed. Why the rush, I can't tell you, but once I embarked on the project I was eager to see the end of it.

I rarely allow much time for intellectual pursuits. By the time my day ends I am usually ready to fall into bed, instantly asleep, probably from succumbing to the numbing effect of the television, Michael's preferred activity, that blares most of the day. He has maybe two or three hours a day where he is ambulatory so the television is his eye on the world when he has to be glued to the couch or wheelchair. I endure the incessant drone in the background, keeping myself busy with the running of the household which involves dozens, if not hundreds, of small tasks every day. If I sit for any period of time with a book or in front of the TV I'm asleep in seconds.

So the intellectual challenge of the taxes at first filled me with trepidation as it did last year, the first year I had ever tackled this household chore. Michael used to do it years ago but when it became very obvious that his cognitive skills had degenerated significantly, I, as tactfully as possible, suggested we hand the whole mess over to an accountant. It seemed especially appropriate to do so at that time since, with his sudden departure from work in 2003, there were drastic changes in our income and taxes anyway, complicating the process for him even more.

But last year I looked at the previous year's bill from the accountant and blanched. We could hardly spare that extra money with Michael's medical costs increasing (even though I now know they provide fodder for tax deductions). How hard could it be? Besides, my brother assured me that even if you screw things up, CRA and Revenu Quebec will sort it out for you. I would hardly say I embraced the task but I did approach it with some intellectual curiosity, resolving that if I really couldn't manage I'd bail and hand over to an accountant.

I plodded through things slowly, doing every family member's forms old-school; pen and paper. I had to. I need to see the numbers spread out before me on the page. I need to have that tactile connection to a task, I always have. I needed the guide books spread out on the table, handy for quick reference. And I didn't trust myself to handle, not only the steep learning curve of doing the taxes for the first time, but also learning how to use a new computer programme. Hey, I still do old-fashioned bookkeeping on top of my onlline banking because I never quite trust the computer.

I got through it and that was even with a broken right wrist that certainly slowed things down even further. The process was not only tactile but painful. And I did a fairly decent job, if I say so myself, with few errors.

This year I resolved to do the same but then my curiosity got the better of me and I
decided just to try out the online programme. Turns out I loved it - so much easier than last year's laborious method, but that slow tactile process certainly cemented the concepts into my slowing brain in a way the computer programme wouldn't have, doing all the calculations for me. That was okay for this year, though, because I at least had a basic understanding of the concepts now and could actually converse somewhat intelligently about things like capital gains and basic personal exemptions.

I immersed myself. The past few days have seen copious amounts of tea consumed and I found myself frighteningly oblivious to my other tasks. Michael was being made to wait for a trip to the washroom or even, one night, for his bedtime routine. When I finally surfaced long enough to pay attention to him, I found him perched on the side of his bed, half dressed, looking lost and exhausted. I had to shut things down immediately and attend to him. He looked up at me with sad, tired eyes, somehow acknowledging in that one look his absolute dependence on me for everything in his life. I felt chastened. I felt as though I had abandoned him for some frivolous affair.

On some level I must have known that I couldn't let this process drag out. This wasn't just a delicious challenge to engage my brain. There had to be a swift conclusion to this task. Better to have a concentrated sniper attack than a long drawn out, distracted affair. Once I got the damned things on their way I knew I wouldn't obsess about them any longer.

So, today was the day of completion, beginning as soon as I could this morning, punctuated by various caregiving tasks but wrapping up with a whoop of joy late afternoon. So satisfying. But clearly I cannot handle that much excitement because here I am at 2 a.m. and I'm wide awake.

What does a girl like me do for excitement? Her taxes.

The Fast

Today was day one for me of the Baha'i fast. It actually began at sunset on March 1 and will end at sunset on March 20 with Baha'is not eating or drinking during the daylight hours, sunrise to sunset. But mine only began today and might not even continue after tonight.

I have been a Baha'i for seventeen years and have never successfully made it through an entire fast. Until a few years ago my metabolism was so rapid that going for more than a few hours without food was impossible for me without passing out. I couldn't drive safely, couldn't function through my busy days with young homeschooled children. I now see some of my children with the same problem, having to eat constantly all day but remaining thin as rakes. I used to be able to eat my husband under the table all the while staying very thin myself. I consumed a lot of calories and burned them all up. To anybody who questioned whether I or my children were anorexic I suggested to them that they come and join us for a meal sometime. (Why are people so comfortable challenging extremely thin people about their weight?)

That all changed a few years ago with incipient middle age and change-of-life. Things slowed down; my life, my body, my metabolism. My kids no longer made physical demands on me so now I really had no excuse. I discovered I finally could observe the fast which was a relief because I had found myself consumed with guilt every year that I consumed my way through the fast. I was painfully aware of every bite that slid down my throat throughout the daytime. My guilt was self-imposed only. My Baha'i friends urged me to relax, not to worry. But worry I did and when I could finally manage to get through at least some of the fast it felt great, restorative.

But things have changed again. Last year I broke my wrist just before the fast and we had a death in the family. Getting up before dawn every day after painful wakeful nights just wasn't an option. And I couldn't do much for myself but had to nonetheless. Feeding myself, doing almost anything for myself became an arduous task so I gave up and once again ate my way through the fast. As a primary caregiver I couldn't take a break from my duties and every task took a long time to complete left-handed.

This year poses similar challenges. My nights rarely allow me a full sleep. If I am not up to check on some problem of Michael's I am usually at least awakened a few times by his yelling and sleep-talking. I wake up fully alert and listen to the monitor that transmits every sound he makes right to my bedside, a mixed blessing. If his noises seem anxious I act promptly because to ignore him if he is in an agitated state means an even more disturbed night calming him down. If he is just chatting fairly amiably to himself and sounds calm I try to drift back to sleep but keep an ear cocked in case things worsen. They sometimes do. So trying to fast and get by on little sleep just didn't seem wise as this year's fast approached.

Then there's the problem of trying to feed myself quietly enough not to disturb Michael or the dogs who, once awake, will then make sure everyone else in the house is awake too. This morning I crept downstairs at 5 am having been awoken by Michael's noises, quietly prepared a cold breakfast and slipped back upstairs to eat it, dogs in tow to sleep on my bed so as not to wake him up completely with their stirrings. I froze with cereal spoon mid-air as Michael made a few more noises over the monitor but I was able to gulp it down in peace and even managed to grab a few minutes more sleep before Michael woke up for the day. But after only a few hours of sleep from his disturbances and little food in my system, I was a bit of a wreck all day. And bad-tempered.

So the fast will have to be a day to day thing, like everything else in our lives, requiring reassessment every morning or even every hour if I have managed to at least start the day's fasting. I'm allowing myself to sleep till I wake up (or Michael does) because for now, adequate sleep is all that gets me through my day most days. And I think I have finally reached the point of not worrying about it anymore. My understanding of the fast is that "it is only a symbol, a reminder" of "abstinence from lust" and that "mere abstention from food has no effect on the spirit" ('Abdu'l-Baha, son of the founder of the Faith).

If there's one thing a caregiver is fully aware of it's abstinence from almost anything that's fun. God will understand if I need my strength from food and sleep to do my work. I hope.

I'm still here

Michael's first words to me this morning were, "I'm still here" with a slight interrogative lift at the end as though he wasn't quite sure. He'd had a relatively comfortable night, nothing alarming but he had started the night a bit uncertainly.

Since an adjustment a few weeks ago in his medication, Michael's anxiety attacks had all but disappeared. I don't understand why since the change was merely a shifting of the timing of one drug, nothing more, so it really could have just been a coincidence. Nonetheless, it was a welcome relief. That was until last night. All was well, watching the Canada-Russia men's Olympic hockey game which had a satisfying finish and, though it ended a bit late for him, he was happy. His medications had long worn off but he was calm. I got him undressed and into bed, tucked him in and started on our bedtime ritual which consists of me reading aloud from a hockey biography and then spending a long time doing the prayers that have become an essential step to ensure a calm night.

Michael has only recently turned to prayer and I am his voice since he can never remember or read independently the words. I am happy to oblige. It is a peaceful time and having missed the step a couple of times and borne the consequences of a restless night for him, it is something I am motivated to do. But last night I had to jump almost straight to that step after abandoning the book.

I had started reading the book as always, but after a paragraph or two he suddenly stopped me. I looked over at him and he was clearly agitated. I checked his blood pressure - definitely elevated but not dangerously so yet. He had difficulty articulating his problem but it seemed that something about the subject's marital infidelities really bothered him. 

Michael is one of the most morally driven men I know. He is honourable, loyal, kind, honest, loving and utterly trustworthy so I didn't understand his concern. What finally came out was his remorse over what he considered "philandering" during his university days and, specifically, not sticking with a girl he'd met who became very ill. I assured him that as a young man he was probably no worse than most of his peers at the time, if not a million times better if his later treatment of women was any indication of how well he probably treated the females in his youth. Then his anxiety increased as he worried about how much he was hurting us by being ill. I did my best to assure him that we loved him and were far from hurt by his condition, just deeply saddened and worried about him. His worries were like a ball in a pinball machine, zinging about in a seemingly unconnected crazy pattern. I had given him his medication some ten minutes before, one of which is an anti-anxiety drug called clonazepam that works wonders but takes from half an hour to an hour to have its calming effect. So we embarked on prayers, holding hands, all the while I was desperately willing his pain to disappear.

As is the way with drug-induced calm, it hit suddenly. I could see him visibly relax. I didn't bother to recheck the blood pressure because I didn't want anything to alarm him now that he was calm. I kissed him goodnight and took myself off to bed not really worrying anymore about the attack except to stay awake until I could hear him snoring peacefully. Any time I awoke in the night I could hear his steady breathing, obviously sleeping.

But when morning arrived he had obviously believed he would not survive the night and I suppose his anxiety was triggered by a perceived need for atonement. It's a strange aspect of this disease that when his anxiety hits he becomes convinced of his imminent death. I have seen it many times and no longer pay much attention to his predictions. So far, obviously, he has always been wrong. It is now later in the day and he has little or no recollection of the episode, thank goodness, and he is back to being happy.

It is not an easy thing to witness because there is little you can do to calm the sufferer besides administering drugs and prayers. And it's timing is completely unpredictable, a bit like that pinball machine.

Parkinson's Crisis

Until recently I had never heard the term Parkinson's crisis or acute akinesia as it is known in the medical literature. Now this is strange since by my reckoning we have had at least two such experiences, but I never knew the phenomenon had a title or was recognized as a normal but frightening development in many patients with an advanced case of the disease. It was a nurse at the little hospital where my husband spent a miserable week in November who first mentioned it. She simply asked if Michael had ever experienced such an attack to which I responded no, having no idea what she was talking about. It seems to me that most days in the life of a Parkinson's patient present crises that must be faced, but they become so commonplace at this stage that one becomes rather inured to such things, so inured that I am often afraid that I will not know when to respond to a true emergency anymore.

A Parkinson's crisis or acute akinesia is an attack of severe Parkinson's symptoms that does not respond to the usual drug therapy and usually lasts a few days or weeks. It is more severe than the usual daily fluctuations in drug response experienced by a Parkinson's patient. Interestingly, an attack can be triggered by a surgical procedure (i.e hospitalization) or "gastric stasis" which, from what I can ascertain, is a slowing down or stoppage in the digestive processes, characterized by nausea and constipation. Acute akinesia is characterized by extreme rigidity, lack of response to stimuli, overwhelming drowsiness; in fact it is described on one medical website as a "much-feared complication of Parkinson's disease" and in another journal, "a life-threatening complication of Parkinson's disease (PD). It is unlike the "wearing-off" phenomenon that occurs when dopaminergic drug levels decline and responds to dopaminergic rescue drugs. Acute akinesia may be a clinical entity distinct from the previously described PD motor fluctuations" (NEUROLOGY 2005;64: 1162-1169).

Michael's neurologist has never discussed this phenomenon with me despite the fact that after a mild heart attack in February 2007, I believe Michael had such an attack. Michael was hospitalized for six days to undergo an angiogram, angioplasty and the insertion of two coronary stents. He was forced to be there that long because he entered the hospital on a Friday morning and, not being deemed an emergency, was forced to wait until Tuesday before the overworked surgeon could see him. What bad planning on our part. Word to the wise: If you have to have a heart attack, you might want to have it early in the week or else plan to have a really bad one if you want to be treated immediately near the weekend.

So Michael had lots of time, in fact four days before his procedure, to sink into the abyss of extreme psychosis that I have since learned is a fairly common problem with advanced patients. The hospital staff seemed unaware of the severity of his predicament. In the emergency ward they had him down as a sufferer of MS until they were duly corrected by me. On the cardiology ward they thought he was suffering from Alzheimer's disease -because of his now extreme psychosis - and alcoholism with a bad case of the DTs because his dyskinesia ( the involuntary movement and shaking Parkinson's patients have to deal with) was by this time also extreme. Apparently nobody ever reads a chart at this hospital.

His psychosis escalated to the point where he became aggressive and hyperactive prompting the hospital staff to sedate him heavily with a drug called Haldol (which I have learned should never be given to Parkinson's patients as it can exacerbate their symptoms permanently) and bind him to his bed, flat on his back, essentially imprisoning the poor man. When we visited him on the Sunday night, day three of his incarceration, he was certain of imminent death and was hallucinating wildly. He was beyond terrified and sad. I visited him with two of our kids and they were horrified at what they saw. I quickly demanded answers from the staff about his condition and they were unperturbed, stating this was a normal state for many presurgical patients. Right. I left the hospital feeling a rare sense of panic and barely slept that night.

Michael did calm down enough to have the minor cardiac surgery and was finally sent home on the Thursday. I was worried how we would cope because his delusional behaviour was worse than I had ever seen it. But on returning home Michael sank into an even more worrying condition. He became what I described as catatonic. He didn't respond to his medications (one of which, by the way, had been suddenly withdrawn by the neurologist in the hospital in an attempt to control the psychosis - it didn't); he was stiff, in pain and delirious. But it was the weekend again and therefore no medical professionals were available on the phone, and I was determined he would not go back to hospital after the nightmare of the previous week. In an act of desperation I gave him a dose of a medication that the doctor had withdrawn completely in the hospital because, to my untutored but logical mind, perhaps the sudden withdrawal of that drug was why he was in this state. Miracle of miracles! Within half an hour of administering that drug, amantadine, Michael was up and walking around as if nothing had happened. On researching this drug I learned two things: Abrupt withdrawal can cause Neuroleptic Malignant Syndrome (NMS) which closely mimics a Parkinson's crisis, and this drug is actually used to treat cases of acute akinesia, so my instincts were good.

On consulting with the doctor after all this drama had passed, he still made no mention of Parkinson's crisis, in fact gave no explanation of the events. I was left in the dark but grateful that Michael had made a comeback.

Fast forward nearly three years to November 2009 when a long spell of hyperactivity and extreme psychosis land Michael in hospital again, mostly so I can get some much needed sleep. He started to spiral even more out of control in the hospital, for which I was somewhat grateful because at least then they would see what I had had to deal with for weeks. And it seemed they could not deal with him, calling me frequently each day to "try and calm him".

The only physical problem the doctors could come up with, after a multitude of tests, was severe constipation. After the heart attack crisis, I had taken over most aspects of Michael's care but one area I had kept out of was the toilet. I naively thought that Michael would apprise me of any problems in that department. What I didn't realize was that his mental state had deteriorated so severely that he no longer could remember what had happened five minutes before let alone whether he had had a bowel movement that day or even that century. It turned out he had been constipated for probably weeks and that could have been the explanation for the descent into the psychosis.

Did you know that the bowel is known as the second brain? Apparently good colon health means good mental health, for all of us not just Parkinson's sufferers. It makes me think of that song, "The arm bone is connected to the shoulder bone.." or something to that effect. In Michael's case the colon bone was firmly attached to the brain bone. While he was in hospital the staff had promised they would address the problem but it was apparent when I finally got the poor man home that absolutely nothing had been done on that front and he was probably worse than ever, prompting all kinds of intervention on my part that I never considered a possibility when reciting my wedding vows.

So Michael returned home and once again I saw him plummet into another of these catatonic states, this time far worse than the first. In the morning he was so rigid that moving him at all elicited screams of pain from him. His medication was taking hours to have effect if at all. He was not only speaking in his usual slurred fashion but what words were coming out were often garbled and mixed up making me think he had had a stroke. He was barely responsive, barely awake. I was sure he was dying and I prepared the kids. None of the medical professionals working with us at home contradicted my assessment.

I furiously searched for any information on what he was experiencing and finally came across the description of what I was now certain he was suffering from: acute akinesia /Parkinson's crisis or it's more frightening cousin Neuroleptic Malignant syndrome which is nearly identical in its manifestation except for a few more nasty symptoms such a hyperthermia. NMS can be a rare but horrible side effect of anti-psychotic medications such as the Clozaril Michael had been prescribed to treat the psychosis, or when a drug like amantadine, as previously mentioned, is suddenly withdrawn. So it could have been either phenomenon given Michael's history: constipation, hospitalization and neuroleptic drugs.

But still no enlightenment from the doctors. It will be up to me to bring it up next time we meet even though I have already had a discussion with the visiting family doctor who knew nothing of these phenomena but promised to consult with the neurologist. What alarms me the most is that I now know this condition is not only frightening but also potentially fatal. Now I am even more committed to keeping him out of institutions as long as I can and to monitor the bowel activity closely since both factors are the main causes of this horrible end-stage complication.

Dementia

We all face aging with a little bit of trepidation, especially my Baby Boomer generation that on the whole has come to expect good health, active living and longevity. In fact anything less seems like failure to the Western health-obsessed generation. Many people now can be treated successfully for illnesses that in the past would have felled them in their prime, diseases like cancer, heart disease, diabetes, and a range of others including Parkinson's Disease. So many of us can look forward to a wonderful and active golden age, skiing into our futures, actively involved in our communities, enjoying our grandchildren long into our dotage. On the whole, compared to our parents' generation and those before them the quality of our lives approaching old age I think has improved.

But many of us have been able to see the flip side of longevity for some, a descent into what we fear is the dark hole of dementia, all the more likely the longer we live. Both my parents lived into their eighties, relatively fit until the last few years of their lives. Dad, who considered all medical professionals as "quacks", refused to see a doctor for most of his life except for the occasional relief from earwax clogging. In his final years, though, his refusal to see a doctor for more serious developments was taken away from him as Mom, in a state of panic one day about him, called me up asking for help. I quickly called a medical friend who kindly offered to make a home visit which started Dad on a course of treatment for prostate cancer. Dad lived well with the disease for a while, accepting relatively low-intervention treatments, but when his disease spread into the bones, he was adamant that he would go no further with treatment and left this world earlier than he might have with treatment. Through it all, though, except for a few moments during a couple of infections, his thinking was clear even right up to the end when he could no longer articulate his thoughts but his eyes had such clarity and understanding we all knew he was completely with us.

Mom, on the other hand, was not so clear headed having developed dementia later in life. She was one of those patients (like my sister who has also survived an awe-inspiring number of serious health problems) who, without modern medical intervention, would probably not have lived past her sixties. Instead she lived to be 85. Mom had cancers (note - plural), an aneurism, gall bladder and serious kidney issues and "women's problems", for all of which she stalwartly sought medical intervention, some of it very brutal, requiring weeks of hospitalization and some arguably leading to other future ailments. So she lived a long and active life but in the final stages was overcome by her dementia.

Now for some, that descent into dementia is a horribly frightening experience and the delusions they suffer can be terrifying. Fortunately modern medicines can successfully relieve many of those terrible symptoms. Mom had to be medicated for extreme anxiety around the time Dad died which was also near the time when she had to be transferred from her retirement home to a nursing home because of her increased need for care (who wouldn't be anxious under such circumstances?). But apart from all that she was relatively happy in her senility. What was so wonderful about her dementia was her conviction that she was busily employed in her old job in the British Civil Service during the war. And she dusted. While she could still move about, she dusted everything everyday, several times a day in fact. Dad whispered to me one day rather confidentially, not long before he was hospitalized for the last time, that it was the best damned gift he'd ever bought her because while she was furiously dusting she wasn't pestering him with her repeated questions every five minutes. And the house was spotless.

There was the day in the nursing home during the summer Olympics that blared out of her television all day long. When I arrived for a visit she angrily asked me why she had been allowed to miss her race that day. She was especially upset because in her mind she was convinced she could have won!

Another day she bitterly complained about her "boss", the poor old guy next door who was confined to his wheelchair and led a pretty quiet and innocuous life. According to Mom he was a lazy lay-about, useless too, and she resented having to do ALL the work. On occasion she would call us up and consult on whether we thought she ought to retire yet! In general our answers to her questions humoured her. We only spoke of the "truth" if she was troubled by something, like when she couldn't remember that Dad had died and was worried about his absence. At times like that it seemed the only humane thing to do was to tell her that Dad had died. She would have a little cry each time and then leave the matter alone. Towards the very end of her life when she seemed to be in and out of consciousness she would laugh and talk to Dad as if he were right there with her. I liked to think he was.

Now my poor husband has barely lived into his sixties and could hardly be described as having had a long life but, thanks to drug therapy, he has enjoyed greater and longer freedom with this disease than those who lived with it a generation or more ago. But that prolongation of life brings with it a greater likelihood of dementia. He has flirted with Death more than a few times and has struggled like an Olympic athlete to remain a functioning human being. That primal urge to survive is strong in my husband as it was in my mother and is still in my sister. What keeps them going? I look at all these cases and shake my head in wonder because I think that if I were faced with the same challenges I might just want to check out of this world. But how do we know until we are faced with it? Their survival instinct seems indomitable despite enormous challenges.

But I wonder if the mild to more extreme dementia and/or the impairment in their cognition that my husband, my mother and my sister have been afflicted with, have actually been protection for them. When my husband watches a televised curling competition and asks me with all seriousness what I think his strategy should be for his next move in the game (!), I am struck by how convinced he is of his actual involvement in that game, how much fun he seems to be having. Mom, too, in her conviction of her ability to win an Olympic track event at the ripe age of 84 and to have enough gumption to actually be annoyed that nobody had the good graces to take her to her event. Mom died happily secure in her belief that she was a fully-functioning cognizant human being. I hope when Michael and my sister face their end, whenever that is, they do too, fully convinced that they were active and alert right up to the end. Isn't that how we all want to leave this world?

Bring on the dementia.

An Outing

Today was a day without respite, tinged with the self-pity I indulge in about once a month, so after Michael's second dose of medication had kicked in at about 11 am (going out any earlier is simply not possible any day before that time), I suggested an outing, perhaps lunch.

Just getting out the door can be a challenge with a disabled person. First we have to wait until his body allows enough movement to do so. It is quite miraculous to watch him go from complete immobility at one moment to complete fluidity the next. As soon as that moment occurs Michael will start the process of preparing to go out. Then he might get distracted by some thought that finds him rummaging around in his room searching for something that is then quickly forgotten or has absolutely no relevance to the matter at hand, i.e getting out the door. Or a bodily function must be attended to. Or a special pair of shoes he hasn't worn in months suddenly has to be found. Then, given the cold temperatures outside right now, care must be taken that Michael is fully dressed before we leave, hat and mitts on, the coat done up completely which can be a challenge with a slightly wonky zipper. He insists he can do it himself but usually I have to intervene if we ever hope to get out before the medication runs out. Today departure went pretty smoothly. We were both motivated to see the outside world.

We went to a small mall in town. For all my aversion to shopping malls, they are a haven for the disabled. Handicapped parking spaces are usually plentiful and access to the mall is usually safe and simple. Malls provide a stimulating environment, lots of people, lots to see, and are easy to navigate with a wheelchair. When Michael is ambulatory he seems to be able to cover far more ground in a mall than he can on a snowy street. Perhaps he feels safer or perhaps he just forgets about things for a while and enjoys the sights and sounds.

We decided to eat at the food court. Fast food is really the only option we can consider for meals out. Service is quick, allowing us to be seated and eat within the potentially short span of time his medication allows. We always plan our outings with priorities: we aim to do only one thing for sure and then if time and medication allow, I have a few other ideas just in case. So today, lunch was the priority. Michael wanted shawarmas, two in fact. Now this is not the easiest food for anyone to eat - plan to take a bath in garlic sauce - but for someone who is disabled it can be especially challenging. I usually bolt through my meal so that I can monitor Michael's progress and troubleshoot without him knowing I am doing so. This means moving the open coke bottle from the edge of the table where it seems to have crept; slipping the tray or a napkin under the deluge of sauce before it soaks his lap; helping him pull away the wax paper wrapping as he makes his way through the deliciously sloppy mess; discreetly wiping his soaked chin before leaving the table.

We made it through the meal without incident then set off for a stroll through the mall. Michael can always think of random things he suddenly wants to buy such as a cd but he can't remember the artist or a power tool he simply must have for some imagined project (I've had to be discreet again in hiding all the dangerous tools in our basement since he can no longer manage any of them safely or competently). But he can usually be persuaded to carry on with the walk which today was fairly brief and uneventful; no major spills and he managed to remain ambulatory the whole time.

We got back into the car and aware that we were approaching the end of the medication cycle and therefore heading into uncertainty, I thought rather than going immediately home, perhaps we could just drive to see some sights. Was there anywhere he'd like to go within these parameters? Answer: I want to go bowling.

Now, Michael has an odd fascination for bowling even though when he plays he usually falls repeatedly causing great alarm and consternation among the staff and patrons at the bowling alley. I have to assure them that he is okay and no, he's not drunk, and Michael happily plays a few games surprisingly well. But that was all before the latest crisis in November when he was hospitalized. Since then he was housebound for the first month or more and it's only recently that I have felt he has improved enough that we can even entertain thoughts of going out for little outings let alone a trip to the bowling alley.

The bowling establishment that we visit is down several stairs with no handicapped access so I must be absolutely certain that Michael is completely ambulatory for the entire visit before I will contemplate such an excursion. Even then I would be nervous of a premature wearing off of his meds making departure from the premises nearly impossible. So today, after already spending an hour at the mall, I knew with a certainty that a trip to the bowling alley would end disastrously. My response was an emphatic NO. I could tell by the slightly hurt look on his face that he was annoyed. I explained in probably my best condescending tone the reasons for my decision and asked if he understood that. He responded curtly that yes, he was still capable of understanding that. I suggested that we plan to make a trip to the bowling alley a priority as an outing this week to which he muttered, "That will never happen".

Michael knows my aversion to bowling. We have enjoyed all kinds of activities together over the years; cycling, skating, cross-country skiing, hiking, camping, to name a few, but bowling is not one of my passions. I used to bowl as a kid and enjoyed it, in fact was rather good, but frankly I now find it rather boring and I hate being stuck in the bowels of a dark, seedy stale-smelling bowling alley. I will relent on occasion but not today. I was sincere when I offered to go another day so when he muttered that remark I was suddenly very angry.

We were driving by now so in my rage I jacked up the music and headed for home seething. Then I found myself pulling into the bowling alley parking lot which was en route to home. In my nastiness I spat out, "If you want to bowl so badly go ahead. Here's your bank card (I have had to manage the various bank cards because he loses his wallet regularly, usually in his sock drawer). Call me when you are done." Let someone else take care of this problem for a while, was my bitter thought. Michael looked perplexed. He groped around to find his wallet. When I asked him the phone numbers he'd need to contact me he started rummaging around in his wallet to find the scrap of paper on which they were written. This uncomfortable process took ten minutes or more, all the while the car was idling in front of the bowling alley with my four-way flashers blinking. I was watching his valiant efforts to just summon up what was needed to get out of the car alone when I relented. We went home.

When we were finally back in the house, both of us avoiding eye contact, he confronted me at last, challenging me on the bossy tone I had taken in the car and complaining that he didn't like to be spoken to like that. As is my way, I dissolved into a mass of tears, angry and remorseful all at once. I explained again why I couldn't possibly have taken him at that moment and how it was unreasonable of him to expect anything else. He apologized as did I. And then, miraculously, the aura of annoyance and self-pity that had enveloped me for a whole day suddenly dissipated. I was back to feeling okay.

What was so comforting to see in this was not my release of anger and annoyance, which as the caregiver I need to always keep in check. There's no excuse for it. Instead it was the annoyance and pique that Michael expressed. At this late stage of his disease, expression of any kind is rare (except, it seems, tears of something like joy over displays of human achievement) especially to me. He must feel the burden of gratitude that he thinks he has to show me. As a total dependent he is most likely afraid to express any complaints about his care. It's too frightening for him to challenge me for fear that I might buckle under the burden of his care and hand it over to someone else. What he doesn't understand is that it is a joy for me to have an actual lucid conversation with my husband and debate and express things to each other - and cry together. For a moment or two my feisty husband was back as was his refusal to be treated badly. He swore to try harder. I did too. The thing is, I'm the only one who needs to change here.