Be It Resolved.

It's January and there has been a lot of snow over the past few weeks, some of it encrusted with a layer of ice requiring extra effort to remove it. Bitter winds. Playful dog getting in the way. Arthritic fingers throbbing from the repeated abuse of shoveling. Wondering if I can, if I want to, keep up the work on this house, my home, with a full time caregiving job. Winter is always a challenging time, isolation sometimes overwhelming especially with fewer days of respite; most weekends, some three long days, are the hardest with often no human contact other than the telephone/computer variety. Michael is weaker, quieter, crazier these days, occasionally breaking free in dangerously cold weather to flee down the driveway, inadequately dressed, escape all too easy out a basement door to the outside when I am distracted. I am amazed how he can go from a near-comatose state sprawled out on the couch to full mobility, full speed escape even now. Going out together on outings is more difficult than ever or maybe just in my head, so we don't. Car rarely leaves the driveway. Only 80 km logged since Christmas time. Great for the environment, not so great for state of mind.

My internal debate has resumed, if it ever stopped, always more fervent at this time of year: Be it resolved that Michael's care is better at home than in a care facility. Arguing volubly "For" is Claire the Ardent Caregiver. Arguing "Against", with far less conviction to make a cogent argument on her own behalf, is Claire the Tired Wife. Here are the questions being lobbed with some force from the Pro Side:

Who would do nightly prayers with him, an essential part of a calm night for him?

Who would patiently (but only after a deep breath) get up to the clanging of his whistle-alarm in the night to reassure him that all is well?

Who would tailor his medications to his needs rather than adhering to the strict schedules of an institution?

Who would allow him to walk as freely as he can in the house despite many falls, not worrying about litigious action?

Who would be there to rescue him from the obstacles of the television remote control, an act repeated many, many times each day?

Who would be there to monitor the subtle cues and clues he gives each day, often silently, a language that has taken me this long to decipher? Clues that tell me he is in distress when he cannot speak. Cues to his need for medication or assistance right now. He would never be able to figure out a simple call button to summon help, a man who can no longer use the telephone, remote control or any other electronic device.

Who would make him his favourite foods when he will eat nothing else, prepare a cup of tea or a snack at odd times of the day? Who would monitor his digestive functions as closely as I do?

Where would the loving, loyal dogs be who frequently demand that he pet them and give them attention, often unlocking a trance he has fallen into?

Where would all his familiar touchstones be that keep him as grounded as he can be these days? Things like the familiar trees in the front of our house that he gazes at for long periods, watching all the life therein. Or just watching the passersby on our road, seeing people come and go.

The answers to all of these questions very strongly support the case for Michael to stay put at home. Add to that the fact that I have seen life up close in an institution. I know how it goes. They are not bad places, and they provide a valuable service for those who have nobody else to care for them or whose care needs are impossible to manage at home. But they are less than perfect. They are chronically understaffed. Residents, especially those with mobility problems, spend long periods of time alone in their sterile rooms often in soiled diapers. If dementia is an issue, a resident like Michael might not even be able to understand how to summon help if needed. There are often residents who are coping with personality changes from the ravages of Alzheimer's, making them aggressive, sometimes violent and a very real threat to others. It can be a terrifying experience for many. I would guess that a lot of calming medication is used for the residents and maybe even the staff.

The guilt I feel at even contemplating such a decision is overwhelming and I know in my heart that life won't necessarily be any easier for me either.  I know myself too well. If the staff in a care facility call upon me to help out - and they would if past experience is anything to go on - when Michael inevitably steps over the cliff into full insanity, I will step up to ease his pain and theirs because he can be completely unmanageable, even violent. I could find myself at his side all the time because I know I am the only one to calm his panic unless staff keep him permanently and heavily sedated and restrained. In the past, restraint has meant tying him up in bed, flat on his back unable to move for hours on end, or tied up in a chair from which he attempts to escape, always harming himself. Yes, I might have the freedom to do a few things by myself without requiring someone on board here at home, but I will be on the road all the time traveling the considerable distance up the highway to help out with his care. Many have argued that surely Michael would adjust.  All past experience when Michael has been hospitalized has shown that his mental condition worsens the longer he is incarcerated. I could only expect the same in a nursing home.

Maybe I need to consider a move to ease the frustration of balancing onerous caregiving duties and home maintenance. But the effort required to even think the thought is exhausting. And there is no accommodation in our community that would suit his needs; no condominiums, no apartments, no accessible housing with small, low maintenance yards. This house suits him perfectly, if only I can manage. I would have to leave the community altogether to find anything better and that I am not ready to do yet.  My friends are here, my support network. We are well located next to amenities making shopping for the essentials quick and easy, my volunteer work just steps away. These considerations do not even include how such a huge change - any change - would inevitably push Michael over the edge.

Besides, I don't want to escape my home, just, some days, my situation. To not hear the incessant crashes to the floor with almost every step he makes, a sound that most of the time doesn't even elicit a wince from me but on occasion I cringe and brace myself for what must be severe injury.  It never is. At home he has fallen thousands of times throughout this disease. Thousands. But he is still independent enough to make that one small decision in his life, to get up and move if he wants to even if it means hurting himself. If he were in an institution, he'd never be allowed to fall so much. Liability issues would override.

Another consideration is the cost of institutional care. I can afford it, I think, but it will mean more fiscal restraint to manage the high cost of care.  My round-the-clock services are free. We have two weddings this year and have committed a small, but not insignificant, amount to each offspring to help with their costs. We live on a reasonable pension but I would have to consider re-entering the workforce which, after being out of it for 30-plus years, is daunting to say the least. A degree in English Literature has never been a ticket to a lucrative job, even less so added to so many years of unpaid domestic work. I am severely out-of-touch with new technological advances in the modern libraries, a revolution that was just beginning when I left the profession.  Besides, in those days, a degree in English was considered enough education for the job.  I'd have to go back to school to qualify now. UGH. I don't think I'd enjoy that any more than when I did it the first time, not to mention the stress it would add.

Whether I ever take the plunge and make that phone call to place Michael remains to be seen. For now the debate continues as a loud chattering in my brain where it must stay. I know where many friends and family members stand on the issue, so sharing the conversation at this point would serve no purpose. I trust I will know on my own when it's time, when the noise is finally silenced, the guilt assuaged. For now Michael's needs supersede my own.

For now I will simply change the topic: Be it resolved that we are both better off maintaining the status quo.

* Lovis Corinth, Vater Franz Heinrich Corinth auf dem Krankenlager

The Persistence of Memory

My mother spoke often of disturbing dreams. Over many decades she was plagued with a recurring one involving a house, never the same house but always without doors.  In each house, my mother was toiling away at her usual domestic chores, and each one had a different, often confusing layout. She would awaken troubled and anxious but never did she try to interpret these dreams, nor did she see them as significant, though over the years she spoke frequently of them to me.

Mom was a very bright woman who had dreamed of higher education and a profession. But she lived in prewar England that was still deeply mired in sexism; women did not flock to university. We now know that the war changed that somewhat for women as it did for my mother. Though she was unable to pursue a university education, she did secure a significant job in the civil service where she worked throughout the war. Women ably stepped into the jobs vacated by the absent men.

After the war, Mom and Dad married immediately and Mom, as a married woman, was forced to vacate her job presumably for a returned soldier. Besides, the thinking went, women must be happy to return to house and home.

Unfortunately, postwar housekeeping was one of drugdery. Added to that were the privations of rationing, making feeding one's family an enormous challenge. It was partly because of these difficulties and the fact that Dad could not see himself advancing as a teacher in a system that tended to favour who you knew over what you knew, that they left Britain for prosperity in Canada, or so they thought. What ensued were years of struggling in small, backwoods Canadian towns; they were always wondering if they would ever get ahead. They moved many times for many reasons throughout my childhood, settling in one small town after another, some of them extremely deprived. A string of small, cramped, poorly heated homes became my mother's reality. Yet never did I hear her complain about these circumstances. To me it seems obvious, though, that she tried to work out these frustrations and her sense of imprisonment in her graphic house dreams. As much as she tried to ignore these memories and emotions, they insistently reared up in her subconscious.

I have some understanding of my mother's desperate isolation. Yet throughout Michael's escalating symptoms and increased disability, I have strangely felt very much in control over my health, my home and my environment, if not his disease.  I have been lucky not to have to worry in the same way Mom and Dad must have over financial security.  I'm sure Dad felt equally trapped in what amounted to near-poverty as a school principal, so poorly paid was he for our first nine years in this country.  Relative affluence did visit them finally when they moved to coastal British Columbia, and yet the irony is that this small mountain village was the most isolated of any they had lived in before. Boat, seaplane or helicopter were the only ways in and out. Then in winter many, many feet of heavy snow would fall, effectively burying houses and cars.  I remember an eight foot wall of snow that faced us as we left our front door.  So, though my parents had escaped the trap of near-poverty, my mother's sense of physical vulnerability and isolation must have been supreme in this coastal town. Having entered middle age with accompanying health problems, she knew that facing a medical emergency in this small town was a serious problem. With no hospital or doctor in the village to treat serious illness, an anxious, sometimes fatal journey was required by helicopter over the mountains, into the next town.

A few nights ago I had my own house dream.  It was this house, my castle, my sanctuary. I was upstairs on the landing, just outside my bedroom when suddenly the interior walls began to melt.  No Salvador Dali clocks, just liquefying walls. It was a very brief dream. I awoke extremely anxious and in a cold sweat.

I pondered my subconscious murmurings and was somewhat puzzled at first.  Then something happened a few days later that seemed to clarify the dream's meaning to me, revealing my own buried fears.

I have enjoyed very good health which I attribute to good genes, good luck and healthy living. I don't smoke or drink. I exercise a lot, in fact haven't been more fit in my life; I am probably more under- than overweight.  I eat well and usually have lots of energy, despite the brain-numbing boredom of my job. I am generally a positive and happy person with lots of good friends.  I feel that I handle stress fairly well.

On Friday night I suffered an attack. I immediately knew it was an extreme gastric event, something I haven't experienced in many years, really since an ulcer I suffered as a young woman.  But I pride myself on my cast iron stomach now - I rarely have digestive difficulties - so when this violent and painful attack hit, I was concerned.  At 55, I am entering that age when women become more susceptible to heart attacks, and though I knew this was not one, I still felt I should pay attention. Women's heart attacks manifest differently, often more vaguely from men's which tend to display the classic signs of crushing chest pain. This was upper abdomen, extending up my chest, into my shoulders and down both arms.  I was in agony for about half an hour. I swallowed a glass of water with baking soda dissolved in it, a remembered remedy of my mother.  I took my blood pressure and pulse - no significant elevation. I knew what this was.  But suddenly I was aware that my complacence might be dangerous given my enormous responsibility to my husband. If something terrible should happen to me, he would be helpless, trapped inside this house. In fact I even asked him halfway through this attack if he knew what to do if I needed help.  He stared back at me blankly, picking up the television remote control.  It was then that I picked up the phone and called a friend, not yet to get help but just to warn somebody that I might need it soon. As her calming voice came over the phone line, my pain subsided and the now-mounting anxiety lifted; perhaps too the baking soda had taken effect. She offered to call back in half an hour, just to check in. She did and by then I was fine.

Though I was outwardly calm and fairly unconcerned throughout the attack, it was afterwards that I understood how vulnerable Michael is, so completely dependent on me.  Visions of a nighttime heart attack or stroke that might kill or seriously disable me haunted me for a couple of days, not for myself but for a husband who in the morning is nearly paralyzed until medication can give him some relief and mobility. Using a telephone is out of the question for him. I am not sure if there is anything more we can or need to do to protect ourselves; I have many who check in routinely and I will continue to be vigilant about my own health.

But I think my dream signalled that my own interior landscape is changing and I may not be able to take my good health for granted. Our bodies usually have a memory and a knowledge that the conscious mind does not; it gives us signals if only we listen carefully.

The Agony of Reading

I don't read much anymore. I'm not sure why because it used to be a consuming pastime. I blame the constant babble from the television set. But on the rare occasion when I do get completely absorbed in a book, the drone is easily blocked out. When that delicious moment happens, it is an effort to attend to the frequent interruptions of Michael's needs and the dogs, who are so spoiled by our constant presence that they have me well trained to jump whenever they need to pass through an outer doorway. Maybe I've just partly solved the mystery of why I don't read - frustration.

But today I finished a book that held me in rapt attention for the few days it took to read it, and I am eager to read this author's second novel. "Still Alice", by neuroscientist Lisa Genova, is the story of Harvard professor Alice's rapid descent into the severe dementia of early onset Alzheimer's disease, somewhat mirroring another famous Alice's stepping into the crazy world beyond the looking glass. It is a heart-wrenching but, I believe, accurate account from the patient's perspective of this terrible disease and how it affects all her relationships, professional and personal, but especially the relationship with her husband.

Though Michael is not afflicted with classic Alzheimer's disease, the dementia he experiences is very close to what this woman suffers, though her descent is far more rapid and is not, of course, accompanied by the same mobility issues of a Parkinson's patient. Otherwise, many of Alice's challenges closely mimic my own poor husband's. It was difficult to read the story from Alice's viewpoint and see articulated all the horrors and awareness she possesses through it all, at least in the early stages.  It made me wonder, if Michael had been able to articulate his own experience, would he have expressed the same devastation?

As well as my sadness at reading about Alice's plight and inserting my own husband's unspoken pain into her words, I came away feeling very angry.

Alice's husband is also a well-respected Harvard professor who, upon hearing of his wife's unbelievable diagnosis, throws himself into learning everything he can about the disease to advocate for her. He does this very well at first.  He loves his wife and wants to do all he can to help her.  But his life is a busy one with many hours spent at his university lab conducting research experiments and weeks away at conferences.  His work, of course, is very important, as was his wife's.  They had even collaborated on a significant book together.

As the novel progresses and Alice's disease moves forward with terrifying speed, John becomes more frustrated dealing with her developing idiosyncrasies. He is even disgusted by an episode where she collapses laughing on discovering she cannot get her sports bra over her head because, as John points out, it's a pair of underwear instead. He spends more and more time away from his wife whose sense of abandonment is palpable. Finally, John is offered an important job in New York that he decides to take even though his wife's stability depends on her familiar surroundings. She, while still able to, argues her case, but he has made up his mind. In the end (***spoiler alert***), he goes, leaving his wife in the care of his three very busy adult children and a weekday caregiver. Alice is able to remain at home.

This is when my blood boiled and I had to put the book down.  Not that I blamed John for pursuing his career. On the contrary, I envied him. He had three adult offspring unrealistically ready to jump in despite busy careers and families of their own. As well he had ample financial resources for expensive outside care. And apparently little guilt or concern for the others who had to shoulder the burden for him. That was the sticking point for me.

Is it guilt that makes me so reluctant to hand over Michael's care to an institution, given the limited options for homecare?  My social worker is offering more weekend respite since well-meaning volunteers have nearly completely dried up over the past several months.  Understandable. They're tired, busy and have lost interest. Like John, it's time to move on.  But I now realize I absolutely must have at least one day per weekend when I can count on getting out for a walk with the dogs. So, in the middle of yet another silent weekend, I have resolved that I will call her back on Monday morning to get that set up.

If that is not enough, she is also offering temporary or permanent institutional care for Michael.  I am baulking. I cannot do it. Not yet. That's when I get angry at this fictitious John, or is it with myself for not having even an iota of John's determination to carry on without his wife?  Is this a gender issue, where women are more likely to give up everything for their mates? Perhaps it is. I am fairly certain that if the tables were turned in our family and I were the sufferer, my husband would NOT give up everything to take care of me.  Our early days of childrearing taught me that; Michael's life, apart from giving up a few parties and enduring a few sleepless nights, changed far less than my own. No, if he were still physically and mentally well, he would no doubt be working and fully immersed in his sports, his defining activities. In fact, during those most rigorous years of childrearing, Michael actually travelled far more for business, something not altogether coincidental, I suspect.

On analyzing my motives, I believe they are pure. I cannot bear to think of Michael suffering in institutional care which has only been his experience thus far.  In recent years there have been no positive moments of separation from me, except for those spent at home with a caregiver, so I can only believe that would continue to be the case. Some have wondered if he might "get used to it" but past experience has taught me that his condition of extreme psychosis worsens with time. Part of my reluctance is an unwillingness to knowingly subject others, albeit professionals, to his inevitable violence and irascibility when I know he is calm and happy at home with me.  It would be a cruelty to all concerned, including me who would undoubtedly be called upon frequently to calm the wild beast.  At least, that's how it has played out every other time.

Perhaps my anger was just an expression of the injustice of this disease, of any disease that affects an entire family so completely and mercilessly. I was angry that John could walk away and I cannot. I was angry at Michael's complete and utter dependence on me alone. I was angry because it's Saturday and another long quiet weekend with the television blaring.  I was angry and wondered if I should give up the sometimes painful stimulation of reading and just succumb to the numbing boredom.

High Fidelity

"I'm afraid you will leave me," was the surprising and unusually articulate response to a probing question I posed yesterday to determine whether there was any definable reason for Michael's increased withdrawal and fatigue.  Frankly, I expected a more mundane answer: a virus was lurking or his stomach hurt. But I have learned that, even if it is something as simple as a mild cold, that can be enough to unhinge his thinking and push him into the depths of paranoia and delusions. And render him oddly articulate.

I reassured him, somewhat sourly and not as gently as I should have, that I have no intention of going anywhere. I have stuck it out this far, right? Besides, I'm not the one who is leaving. He is. Has. The Michael I knew and married left me a long time ago for the demanding and unforgiving new mistress that is Parkinson's Disease.  I have simply been relegated to the post of Chief Cook, Nurse, Housekeeper and General Factotum. On occasion the old Michael will emerge, but that person has almost completely gone now and only surfaces unexpectedly, rarely and usually in the company of others, not just for me.

There was one occasion, in the throes of one of his many psychotic crises, that he actually accused me of having an affair. If he hadn't been so ill, I would have been highly offended but instead I let out a loud guffaw at the silliness of such an idea.  Even if I wanted to, when on earth would such an occasion present itself, let alone a willing partner in crime? My thirty-one years of marriage have been devoted to my children and my husband - and happily so - but it has been a busy life, affording no opportunities for clandestine affairs, especially during the past two years of very intensive care.

But his comment, quickly forgotten by him, rattled around in my brain long after.  Michael and I, over the years, have had an uncanny connection; finishing the other's sentences, sensing things before they were articulated. Michael even went into "labour" with me the first time. Most long-married couples experience this, I am sure. I don't think I am particularly good at hiding my feelings either. Perhaps everyone can read me like a book. Nevertheless, I started to think about it and felt twinges of guilt because recently my mind has been stepping out.

Lately, as reported in an earlier post, I must engage my fantasy world to assuage certain longings. During my conscious, waking hours, I can easily summon the ghost of my relationship with Michael. But it is during my nocturnal subconscious wanderings that I am seeing the change. Where, until recently, my dreams only ever involved my husband, now I am summoning other faces and bodies, some achingly familiar. I awaken feeling sad, and though I can in no way control where and with whom my subconscious decides to travel while I sleep, I am still left with a sense of my own betrayal. I miss intimacy terribly, often painfully, but I know in my heart that I would never consciously betray my bonds with my long-suffering Michael. Only in my dreams am I doing that.

So, rather than Michael merely expressing his own dark irrational fears, perhaps he is still finely tuned to me, sensing, at least on a subconscious level, that I have already taken a dangerous step away from him. And maybe I am preparing myself for the ultimate separation.