I am a caregiver to my husband who was diagnosed with ALS two years ago. In less than 2 years he went from being a healthy, athletic 6'3", 220lbs to a man barely 147lbs, completely paralized, unable to eat, speak, or move on his own with exception of his eyes and a few facial muscles. Nothing prepared us for this experience. Our two kids found themselves turning into caregivers of their father at a tender age of 13 and 10. Also as a person who understands the effects of stress on the body and health, I have to work harder at finding time for self-care. It is not always possible. But my body protests by letting me know I need to slow down, meditate, drink more water, eat better and on time and surrender to the reality of our life. I no longer plan ahead for any activity that ads no value to my life. But I set aside 15-20 to be with me in a quiet place, stretch or go for a brisk walk.
Recently my husband got a tracheostomy and is on a vent machine at night, soon I realized I was not sleeping at night because he requires 24/7 attention, responding to vent alarms, suctioning him, etc is an around the clock task. After 3 weeks of doing this on my own I had to make a choice, it was between getting sick or staying healthy to hold the fortress and be there for the kids and my husband.
Despite the fact that cost of caregivers is high (about $300 per day for two people/2 shifts)and no insurance covers this unless you have a long term care plan (which we did not have) I decided that my health was too important to take any chances. She we cashed out my hubby's 401K and we are using the funds to cover for his caregiver cost. Financial stress is bad but for the time being I prefer to keep my body healthy until the funds run out or I am able to go back to full time work provided I find a flexible job that will allow me to have balance in my life.
I am getting more sleep but need to reset my internal clock as I got used to staying up throughout the night or waking up almost every 30 minutes when vent alarms went off. I am spending more time with the kids, who patiently waited for mom to be available and help with their homework. I am back to my self-help care plan which was put on hold for over a year. Will it be too late for my body? Time will tell.
The stress is still there and every waking day I must remind my self that I do not have all the answers to what we are going through and need to accept the experience to find its purpose. I can choose to make the best or the worst of each day I wake up. I choose to former. My role of caregiver remains even with the presence of two helpers and the lost of privacy. I choose not to worry about money, about the future or about finances. Staying focus on the present and keep any worries of tomorrow away from the head is not easy task but I trust in s divine plan that will reveal in time!
My husband would have done the same if I had been ill, I have no doubt but it would have been done his way. I think his primary focus would have been keeping the finances strong by working more or getting a second job. He would have stressed out more about financial security and keeping up with the expenses. That would have been OK with me. Men are hunters and bread winners, women are caregivers and hold the home together. We have roles that come from ancient times....
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I am a caregiver to my husband who was diagnosed with ALS two years ago. In less than 2 years he went from being a healthy, athletic 6'3", 220lbs to a man barely 147lbs, completely paralized, unable to eat, speak, or move on his own with exception of his eyes and a few facial muscles. Nothing prepared us for this experience. Our two kids found themselves turning into caregivers of their father at a tender age of 13 and 10. Also as a person who understands the effects of stress on the body and health, I have to work harder at finding time for self-care. It is not always possible. But my body protests by letting me know I need to slow down, meditate, drink more water, eat better and on time and surrender to the reality of our life. I no longer plan ahead for any activity that ads no value to my life. But I set aside 15-20 to be with me in a quiet place, stretch or go for a brisk walk.
Recently my husband got a tracheostomy and is on a vent machine at night, soon I realized I was not sleeping at night because he requires 24/7 attention, responding to vent alarms, suctioning him, etc is an around the clock task. After 3 weeks of doing this on my own I had to make a choice, it was between getting sick or staying healthy to hold the fortress and be there for the kids and my husband.
Despite the fact that cost of caregivers is high (about $300 per day for two people/2 shifts)and no insurance covers this unless you have a long term care plan (which we did not have) I decided that my health was too important to take any chances. She we cashed out my hubby's 401K and we are using the funds to cover for his caregiver cost. Financial stress is bad but for the time being I prefer to keep my body healthy until the funds run out or I am able to go back to full time work provided I find a flexible job that will allow me to have balance in my life.
I am getting more sleep but need to reset my internal clock as I got used to staying up throughout the night or waking up almost every 30 minutes when vent alarms went off. I am spending more time with the kids, who patiently waited for mom to be available and help with their homework. I am back to my self-help care plan which was put on hold for over a year. Will it be too late for my body? Time will tell.
The stress is still there and every waking day I must remind my self that I do not have all the answers to what we are going through and need to accept the experience to find its purpose. I can choose to make the best or the worst of each day I wake up. I choose to former. My role of caregiver remains even with the presence of two helpers and the lost of privacy. I choose not to worry about money, about the future or about finances. Staying focus on the present and keep any worries of tomorrow away from the head is not easy task but I trust in s divine plan that will reveal in time!
My husband would have done the same if I had been ill, I have no doubt but it would have been done his way. I think his primary focus would have been keeping the finances strong by working more or getting a second job. He would have stressed out more about financial security and keeping up with the expenses. That would have been OK with me. Men are hunters and bread winners, women are caregivers and hold the home together. We have roles that come from ancient times....
December 18, 2008 - 11:44pmThis Comment
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