This is not a new state of being for me. For years I have battled mildly low spirits at this time of year. Who doesn't? The darkness is long even with the slight increases in daylight every day. The days are cold, triggering that hibernation instinct that most of us experience, save those who embrace winter sports. I do not anymore; I cannot with the restrictions Michael's care imposes.
But there are strategies I have found that work. These I have employed since the kids were little and often sick through the winter months, and then again through the long years we homeschooled, though then we were always very busy and active with little time for low spirits.
Routine is critical for me, but at the same time that unwavering routine that is so imperative for Michael's health can be oppressive. Every day his medications, dispensed five times a day, are administered with clockwork precision. The eighteen pills a day are essential if Michael is to have any hope of mobility or lucidity, but at least he takes fewer now than the thirty-plus a day of recent history.
Michael's routine rarely varies, especially during this current period of calm and relative well-being. Nearly an hour after his first dose of medication at eight in the morning, which is how long it takes his body to loosen up from the near-paralysis of the night, I lift him up in bed, clean and dress him, none of which he can do on his own anymore. I throw in the load of laundry generated through the night then serve him breakfast. He slowly eats and reads the paper, nodding off here and there. When it is apparent that he has fixated on the same word for more than about five minutes, I wheel him over to the couch where I prop him up with pillows, cover him with a blanket and turn on the television to a sports news channel; Michael snoozes peacefully most of the morning.
Afternoons are usually not much different. He doesn't really gain any significant wakefulness until about one or two in the afternoon, at which time he eats. Then I encourage him to move around the house a bit to get the legs moving while he can. Or, if he is really well, we try to walk around outside or hop in the car for a change of scenery. By three o'clock, he is running out of steam and is back in front of the television, if he ever left, nodding off again. Supper at six, more television in the evening, bedtime at ten when the morning's process is reversed, prayers, sleep.
Michael's routine rarely varies, especially during this current period of calm and relative well-being. Nearly an hour after his first dose of medication at eight in the morning, which is how long it takes his body to loosen up from the near-paralysis of the night, I lift him up in bed, clean and dress him, none of which he can do on his own anymore. I throw in the load of laundry generated through the night then serve him breakfast. He slowly eats and reads the paper, nodding off here and there. When it is apparent that he has fixated on the same word for more than about five minutes, I wheel him over to the couch where I prop him up with pillows, cover him with a blanket and turn on the television to a sports news channel; Michael snoozes peacefully most of the morning.
Afternoons are usually not much different. He doesn't really gain any significant wakefulness until about one or two in the afternoon, at which time he eats. Then I encourage him to move around the house a bit to get the legs moving while he can. Or, if he is really well, we try to walk around outside or hop in the car for a change of scenery. By three o'clock, he is running out of steam and is back in front of the television, if he ever left, nodding off again. Supper at six, more television in the evening, bedtime at ten when the morning's process is reversed, prayers, sleep.
These routines, in the comfort of his home, keep Michael on an even keel mentally. Any change can spell catastrophe without extreme vigilance on my part. Sometimes I don't know what the change might be because it is something silently and mysteriously lurking within his own body, my only clues being his mental state and the state of his bowels, accompanied by much guess work on my part.
So I have had to develop my own strategies for remaining sane in the midst of these rigid routines. I embrace whatever time I have to myself in the house which is only early in the morning and late at night when he is safely in his bed. At these times, though I am plugged into the monitor that allows me to be elsewhere in the house, I quietly enjoy my early cups of tea or, if it's late at night, I immerse myself in our luxurious claw-footed tub with a good book for companionship. Reading is otherwise difficult during the day with the constant drone of the television.
Every day I try to have a plan of action that I review in my head each morning. If it is one of the four three-hour shifts that our caregiver comes, I have plans to go out, even if it's just to walk the dogs and shop for groceries at the nearby store. Monday morning I always meet a good friend for a walk and breakfast when we rehash the week's events in our respective families. Tuesdays I work across the street at my favourite place with my favourite people on a volunteer project we've all been committed to for years: the Nearly New Shop processes and resells gently used clothing, the significant proceeds from which go to support various worthwhile community, national and international charitable projects. I love the work; I love the people. They feed my soul. Other days I may simply have a plan to do housework or a workout in our basement while Michael sleeps.
As long as I have one thing planned I am content. I don't even have to be rigidly fixated on completing it; I could be easily derailed by something else that comes along, like a wonderfully long and unexpected phone call from any or all of my children. But I must have something to anticipate every morning to give the day some shape. The rest of the day I can fill in with small projects like knitting and writing and the endless tasks of caregiving. Variety of activities throughout the day is essential.
I have also learned that I need order and cleanliness in my environment so I take a great deal of the time available to me to ensure that chaos is controlled. It is a small thing but I do believe that order of the mind is maintained by order in my environment, inside and out. I take immense pleasure in keeping house, something I am nearly shy to admit. I plug myself into my ipod with loud, usually testosterone-driven music blaring, while happily vacuuming, singing, dusting and dancing with my partner the mop. Fortunately Michael is extremely good at sleeping through very loud noises and has even slept through shoving his couch around to clean underneath. I knew those weight lifting exercises would come in handy for something.
Internet provides a link that allows me to keep in touch with the world at large without having to engage in long conversations with folks over the phone if I lack the energy for such things. Facebook, msn and email keep me connected and anchored to the world, assuaging that feeling of isolation, adrift at sea, that can overcome caregivers in the winter. And a laptop with WiFi is critical for flexibility of movement.
I cannot say enough about friends, family and neighbours who, though this has been and will continue to be a marathon event, keep in touch and help out when I need them or simply are a friendly, smiling hello in the street. I am far better at asking for help than I ever used to be, but I am also aware that this is a very long- term commitment and I must not wear out any one person's goodwill. Fortunately there are many to dilute the requests.
I am also blessed with a cheerful and competent caregiver with whom Michael is very comfortable, as comfortable as he is in my company. A telling sign of his ease with her is how readily he will fall asleep in her company. With visitors he sees less often, he will force himself to stay awake and strive so hard to be engaged in conversation, a very, very difficult task for him. Afterwards he collapses with fatigue, but I believe the effort he must make is good stimulation and it is usually rare enough that he has plenty of recovery time in between.
I have to protect my own health in this endeavour because I have learned that if I get sick or injured this ship is at serious risk of sinking. To that end I have found that regular meals and healthy eating are critical for both of us. When our family of four children was growing up, it was a wonderful time of laughter and sharing even if loud, raucous and sometimes argumentative. I have mostly enjoyed the meal planning and cooking experience though there are times when I could hurl the pots out the window. Our meals, with just the two of us, after all those years with loud, riotous children, are usually spent in monkish silence, but I believe there is still much value to breaking bread together. It provides a semblance of the normalcy of family life, at least, and I believe that contributes to Michael's continued connection to his environment.
Sleep, of course, is essential to good health and good spirits. These days I am getting plenty, but I am always aware that could change in a heartbeat. With recent adjustments in medications, Michael now sleeps very well with only the occasional restless night which I can usually predict from the day's activities and emotions. If anyone is going to wake me in the night, it is more likely to be one of our aging dogs with their weakening bladders. I am a huge fan of afternoon naps, and Michael's usual sleepy demeanour allows lots of opportunity for a snooze together. It is a warm, intimate time, the two of us spread L-shaped on our couch for about an hour most afternoons.
After painfully putting out my back four years ago and eschewing all but the most minor of pain relievers, I went on a campaign to eliminate the recurrence of the problem by embarking on a regular exercise programme. Last Mothers' Day, to augment my routine, I bought myself a third-hand elliptical machine that creaks and groans more loudly than my own body but it does the job. Combining that with strengthening exercises, I have managed to lower my risk of back injury significantly and have flattened the old abdomen as a bonus, for what it's worth. While Michael naps I slip down into the basement and, once again, out comes the testosterone-fueled music which motivates me and allows a lapse into fantasy; Annie Lennox's raunchy "I Need a Man" fits the bill too, even if her "Sisters are Doing if for Themselves" more aptly describes that aspect of my life. Did I say monkish?
I have two regular days a week that I am without respite so I make the workout the plan for those days. But at least four days a week I can get out for brisk walks with the dogs, an activity I prefer to the workout, but the effects of the two are quite different: Peaceful, meditative walks alone in the fresh air and nearby forest feed my spirit, whereas the exercise programme is purely for strengthening the body.
This morning, for once, I had no real plan beyond the usual routine, so a rare but brief sense of despair and lethargy had time to morph into a restive streak. Sometimes on a weekend, volunteers step forward for an hour allowing me time for a walk, but today nobody came. My restlessness mounted throughout the morning, the sunshine beckoned. In frustration, I declared to Michael that we would go for a walk or a drive in the afternoon, and before that, while he slept, though I hadn't planned to, I threw myself into some housework that didn't really need to be done. In the end, the housework got done around surprise phone calls from my girls, and we only got out for a short walk. Michael's meds ran out and I had to run to get the car, putting a quick end to our stroll, but I think we both felt better for the five minutes in the sun.
So, it turned out to be a good day after all, a full day when I was afraid it would drag. No plans, but my family and the physical activity of creating order in my home came to the rescue. That and the music of a few rock stars.
* from Lionel Shriver's "The Post-birthday World"
So I have had to develop my own strategies for remaining sane in the midst of these rigid routines. I embrace whatever time I have to myself in the house which is only early in the morning and late at night when he is safely in his bed. At these times, though I am plugged into the monitor that allows me to be elsewhere in the house, I quietly enjoy my early cups of tea or, if it's late at night, I immerse myself in our luxurious claw-footed tub with a good book for companionship. Reading is otherwise difficult during the day with the constant drone of the television.
Every day I try to have a plan of action that I review in my head each morning. If it is one of the four three-hour shifts that our caregiver comes, I have plans to go out, even if it's just to walk the dogs and shop for groceries at the nearby store. Monday morning I always meet a good friend for a walk and breakfast when we rehash the week's events in our respective families. Tuesdays I work across the street at my favourite place with my favourite people on a volunteer project we've all been committed to for years: the Nearly New Shop processes and resells gently used clothing, the significant proceeds from which go to support various worthwhile community, national and international charitable projects. I love the work; I love the people. They feed my soul. Other days I may simply have a plan to do housework or a workout in our basement while Michael sleeps.
As long as I have one thing planned I am content. I don't even have to be rigidly fixated on completing it; I could be easily derailed by something else that comes along, like a wonderfully long and unexpected phone call from any or all of my children. But I must have something to anticipate every morning to give the day some shape. The rest of the day I can fill in with small projects like knitting and writing and the endless tasks of caregiving. Variety of activities throughout the day is essential.
I have also learned that I need order and cleanliness in my environment so I take a great deal of the time available to me to ensure that chaos is controlled. It is a small thing but I do believe that order of the mind is maintained by order in my environment, inside and out. I take immense pleasure in keeping house, something I am nearly shy to admit. I plug myself into my ipod with loud, usually testosterone-driven music blaring, while happily vacuuming, singing, dusting and dancing with my partner the mop. Fortunately Michael is extremely good at sleeping through very loud noises and has even slept through shoving his couch around to clean underneath. I knew those weight lifting exercises would come in handy for something.
Internet provides a link that allows me to keep in touch with the world at large without having to engage in long conversations with folks over the phone if I lack the energy for such things. Facebook, msn and email keep me connected and anchored to the world, assuaging that feeling of isolation, adrift at sea, that can overcome caregivers in the winter. And a laptop with WiFi is critical for flexibility of movement.
I cannot say enough about friends, family and neighbours who, though this has been and will continue to be a marathon event, keep in touch and help out when I need them or simply are a friendly, smiling hello in the street. I am far better at asking for help than I ever used to be, but I am also aware that this is a very long- term commitment and I must not wear out any one person's goodwill. Fortunately there are many to dilute the requests.
I am also blessed with a cheerful and competent caregiver with whom Michael is very comfortable, as comfortable as he is in my company. A telling sign of his ease with her is how readily he will fall asleep in her company. With visitors he sees less often, he will force himself to stay awake and strive so hard to be engaged in conversation, a very, very difficult task for him. Afterwards he collapses with fatigue, but I believe the effort he must make is good stimulation and it is usually rare enough that he has plenty of recovery time in between.
I have to protect my own health in this endeavour because I have learned that if I get sick or injured this ship is at serious risk of sinking. To that end I have found that regular meals and healthy eating are critical for both of us. When our family of four children was growing up, it was a wonderful time of laughter and sharing even if loud, raucous and sometimes argumentative. I have mostly enjoyed the meal planning and cooking experience though there are times when I could hurl the pots out the window. Our meals, with just the two of us, after all those years with loud, riotous children, are usually spent in monkish silence, but I believe there is still much value to breaking bread together. It provides a semblance of the normalcy of family life, at least, and I believe that contributes to Michael's continued connection to his environment.
Sleep, of course, is essential to good health and good spirits. These days I am getting plenty, but I am always aware that could change in a heartbeat. With recent adjustments in medications, Michael now sleeps very well with only the occasional restless night which I can usually predict from the day's activities and emotions. If anyone is going to wake me in the night, it is more likely to be one of our aging dogs with their weakening bladders. I am a huge fan of afternoon naps, and Michael's usual sleepy demeanour allows lots of opportunity for a snooze together. It is a warm, intimate time, the two of us spread L-shaped on our couch for about an hour most afternoons.
After painfully putting out my back four years ago and eschewing all but the most minor of pain relievers, I went on a campaign to eliminate the recurrence of the problem by embarking on a regular exercise programme. Last Mothers' Day, to augment my routine, I bought myself a third-hand elliptical machine that creaks and groans more loudly than my own body but it does the job. Combining that with strengthening exercises, I have managed to lower my risk of back injury significantly and have flattened the old abdomen as a bonus, for what it's worth. While Michael naps I slip down into the basement and, once again, out comes the testosterone-fueled music which motivates me and allows a lapse into fantasy; Annie Lennox's raunchy "I Need a Man" fits the bill too, even if her "Sisters are Doing if for Themselves" more aptly describes that aspect of my life. Did I say monkish?
I have two regular days a week that I am without respite so I make the workout the plan for those days. But at least four days a week I can get out for brisk walks with the dogs, an activity I prefer to the workout, but the effects of the two are quite different: Peaceful, meditative walks alone in the fresh air and nearby forest feed my spirit, whereas the exercise programme is purely for strengthening the body.
This morning, for once, I had no real plan beyond the usual routine, so a rare but brief sense of despair and lethargy had time to morph into a restive streak. Sometimes on a weekend, volunteers step forward for an hour allowing me time for a walk, but today nobody came. My restlessness mounted throughout the morning, the sunshine beckoned. In frustration, I declared to Michael that we would go for a walk or a drive in the afternoon, and before that, while he slept, though I hadn't planned to, I threw myself into some housework that didn't really need to be done. In the end, the housework got done around surprise phone calls from my girls, and we only got out for a short walk. Michael's meds ran out and I had to run to get the car, putting a quick end to our stroll, but I think we both felt better for the five minutes in the sun.
So, it turned out to be a good day after all, a full day when I was afraid it would drag. No plans, but my family and the physical activity of creating order in my home came to the rescue. That and the music of a few rock stars.
* from Lionel Shriver's "The Post-birthday World"
My dad was diagnosed with Parkinson's disease.his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 47 degree angle, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,am highly recommended this www.ultimatelifeclinic.com to anyone who needs help.
ReplyDelete