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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.

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