Blog Farm

The Blog Farm

Thursday, February 25, 2010

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.

Wednesday, February 24, 2010

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.

Sunday, February 14, 2010


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.

Saturday, February 13, 2010

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.

Saturday, February 6, 2010

How to Survive Chronic Illness

I get many worried emails and phone calls from friends and family wondering how we are doing. Most people cannot imagine a life of isolation caring for a very sick person. It is difficult, I cannot deny that but there are a few key things that make it bearable - more than bearable.

Probably right up there would be good medical care, of course. We have been fairly lucky on that front though I am constantly reminded how important it is for a sick person to have a good advocate. This is not my ego speaking because it could easily be any other person willing to take on the job, but I know with a certainty that Michael is alive because of my vigilance and intervention on his behalf on many occasions when he was far too ill to speak for himself or even be aware of incidents that dangerously flirted with the boundaries of malpractice. The caregiver knows the patient best, knows when things are not right even without any medical training. Years of coping with a loved-one's disease makes you pretty close to an expert of observation and even treatment.

Michael's own neurologist admitted that recently when I approached him with a suggestion to modify Michael's medication, information I had gleaned from a website about the most recent addition to the arsenal of drugs he takes. The neuroleptic drug Clozaril used to treat Michael's psychosis had been prescribed to be taken twice daily, morning and night. I was finding that Michael was very dopey throughout the day, a welcome relief in the first weeks home from the hospital, but I could see that the continued daytime lethargy was doing him no good, not allowing him to move much during the day under his own steam. It seemed to me that by giving the entire dose at night only (recommended by the British website for this drug) might give him more energy during the day and ensure better sleep at night for both of us. The doctor agreed, declaring I would soon do him out of his job, and I am happy to report that so far, at least, Michael has responded exactly as I predicted. He is far more alert throughout the day and is needing me to do less for him as a result. Moral of that story is: every patient needs a good doctor who is willing to listen to a good advocate.

Another important element in surviving the rigours and isolation of caregiving is family. I have been blessed with four children, three of whom live away from home, too far to be of daily assistance but who are sure to phone home at least once a week each and offer happy chatter about their independent lives. Nothing allows me to focus so closely on the matters at home more than the comfort of knowing that my kids are more than okay. That doesn't mean their lives are without cares, far from it, but I am assured that all four of them are adults who don't really need me to sort things out for them anymore, if they ever did. When they visit, they jump in and help me; they no longer demand much of me except company and good conversation. Even the youngest still at home has turned into a responsible young man going about his business but always careful to tell me where he will be and when to expect him home, knowing that worrying about his whereabouts is the last thing I need. When he comes in very late he is so silent that I never hear him; he knows how valuable my sleep is. I trust him so much that I never lie awake anxious about his safety. I am careful not to ask too much of this child who has already given so much but now needs to get on with his own life.

Then there's my brother, ten years my senior whom I barely knew as a kid because he left home at 17 but whom I've come to know in the past ten years or so as a kind and generous man who would drop everything to come and help out if I need him. My 85-year-old mother-in-law calls every morning at exactly 8:50 just to check in and see how I am. I don't give her too many details about her sick son - she can't bear it - but, having gone through years of intensive caring for her own husband with Alzheimer's up until last February when he died, she's always concerned about me,. There's my sister who is far too ill now to call me independently but when we do get to speak to each other she always asks after Michael and speaks sympathetically as though our problems are far worse than her own.

There are the more distant relatives: a British cousin whom I've only met once nearly 40 years ago but she calls regularly to check in; the parents of our "son-in-law" who have become good friends who phone and email regularly. There are Michael's relatives who leave nice notes on my facebook page or who make a special trip up to visit and bring his mom and 93-year-old aunt providing us with a happy afternoon of tea, chocolates and lively chatter. Then there are the quieter cousins who give me quiet comfort just knowing that they are reading my blog and keeping abreast of our lives. Family has kept us afloat.

Another key element of our continued well-being is the good system of social services in the province of Quebec that I'm not sure is matched anywhere else in the country. I have home visits from a doctor and a nurse whenever I need them, any time of the day or night, at least for the nurses. The government has provided us with a free wheelchair and a complete overhaul of a main floor bathroom rendering it completely wheelchair accessible. I have an allowance for 20 hours of home care and respite per week permitting me to choose anyone I deem fit for the job or select from a lengthy list of regional caregivers. I chose a neighour who has known Michael for longer than I have, a retired friend that Michael played hockey with for years and years. This fellow is big and burly, more than physically capable of lifting when necessary but more importantly an avid sportsman like my husband, so they comfortably watch the sports channels and amiably drink coffee together if Michael happens to be awake. As far as Michael is concerned he is just visiting with an old friend not being cared for, an important distinction in his mind.

And this brings me to the final important factor in survival of chronic illness together, maybe the most important, and that's community. Not only are we lucky enough to have a retired neighbour and old friend willing to devote up to 20 hours a week caring for my husband for next to no recompense, but we are blessed with friends and neighbours in our community who are a constant but unobtrusive presence in our lives. There's the good friend who took it upon herself to organize a roster of folks in the community to bring weekly meals and provide weekend respite for me when my caregiver is not available. Many of these people we barely know but they bravely arrive, food in hand, willing to pitch in with Michael's care so I can get out for a quick walk with my dogs and perhaps do a bit of grocery shopping for the weekend. Sometimes these brave souls have to assist Michael with some very personal and intimate tasks but no one seems daunted. Often they stay after I get back happy to chat and we get to know each other better. There are the neighbours whom I hardly know who show up unannounced with pies and cakes. There's the friend down the road who will come in an emergency when I need her - there's a few of them actually. There's the dear friend who never misses our Monday date for breakfast where we laugh and cry about everything. There's my gruff but kind neighbour who will come over and fix a small electrical or plumbing problem for me, refusing any money, claiming that his little dog spends too much time at my house anyway. There are the lovely voicemail messages I get from just about everyone, many of them I often have no energy to reply to but whose voices I love hearing. I hope they understand that I appreciate their calls and that my rudeness is usually just exhaustion. There are the neighbours who stop and offer a ride when Michael is obviously not able to get home under his own steam, his drugs having suddenly and prematurely failed him.

To all of these people, almost countless in number, I send my thanks whether you are the supportive doctor or nurse, the distant or not-so-distant relatives, the neighbours or friends from near and far. All make me aware that, as with children who need a village to raise them, the chronically ill and their primary caregivers also need the entire community to support and care for them.

Thursday, February 4, 2010


On the whole I consider myself a relatively calm person and I handle the day to day problems of caring for a severely disabled person with a certain amount of serenity and peace. At least that's how I see myself from the inside. Perhaps those around me would have something else to say on the matter. But I know that the serenity is fragile, easily shattered if my ordinary rather dull life is shaken up a bit.

This week my son and I decided to sell a computer on a website specializing in online sales. A buyer came forward and negotiations went ahead fairly smoothly until today. Because of my lack of computer savvy and my inability to act fast enough for the purchaser there was a flurry of anxious emails from the buyer and the website urging me to get on with it. Now, I live in a small town not a great distance from the local post office but far enough that I needed a caregiver to step in while I carried out the simple errand of mailing the item. The post office staff had difficulty with the exchange because of the size of the box which contributed to the extreme cost involved in sending this piece half way around the world. They hemmed and hawed over how to reduce the cost for me even though this had all been carefully researched. The buyer knew how much he had to pay and had covered the cost for me. But the kindly post mistress was convinced she could find another way. This all took longer than I had so I anxiously checked the clock on the wall, sweating in my winter garb and wondering if my caregiver whose own time was limited would be able to hang on. Then I was told there was vital information missing from the contact information for the purchaser. Could I get that in the next half hour before closing time? I scooted home, sent my nervous caregiver off (he had an important appointment), hastily contacted the purchaser urging him to speedily provide the missing tidbit of information before 5:45 pm. I stared at the computer screen willing it to magically produce the email I needed and then at 5:47 there it was. Would the post office still take my call? YES. Thank goodness.

Now you may be asking yourself why all the fuss, why I was so racked with anxiety over this silly matter. The answer is I don't know. It didn't matter if the information got to me tonight or not. The package could wait till tomorrow to go out. All this while I was getting those anxious slightly accusing emails from paypal and the purchaser wondering about my delay. What delay? I had explicitly told the purchaser I probably wouldn't get to it today and yet here I was succumbing to the pressure. I couldn't shut myself off or the computer and let it rest. I drove myself crazy with it. Then the final straw, after I had provided the all-important post office tracking number for paypal, they contacted me informing me that I needed to send a scanned copy of the postal receipt, that the tracking number wasn't enough. But the computer that had been hooked up to the printer was in a box at the post office awaiting a truck to take it far away. And with my resident computer geek (my son) not here I didn't know how to hook up the laptop to the printer. AAAAGGHH. I wrote my first anxious email back to the purchaser explaining my plight, that I wasn't going to run away with his money and not provide the goods and that my very sick husband needed me tonight SO LEAVE ME ALONE!!! An apology arrived a short time later.

In the meantime, my poor husband fell into his usual evening spell of anxiety, worse than usual, I'm sure, because of my heightened tension. I tried to reason with myself that this was all too silly to worry about and I had done all I could so let it go. I'm sitting here typing, still waiting for the jitters to ebb away, watching my husband's body language and hoping he too will relax as the medication I had to give him half an hour ago kicks in to relieve his stress.

Maybe I need one of those little blue pills. Maybe I'm not as serene as I thought. Maybe I have to be extra careful to avoid ALL stress beyond the rather high level of it we already have to deal with every day. And how on earth do you do that?