Scary tale from Support Group
I missed the first meeting in August of my Alzheimer's Support Group -- a wonderfully supportive gathering of men and women who have been and are sole and/or primary caregivers. This is the second group that I've been involved with. My first one was a new group begun by a wonderful former geriatric nurse. When she decided to leave as leader, the group began a series of downhill runs with individuals who verbalized a commitment to Alzheimer's patients and care givers, but whose behavior suggested a commitment to something else ... anything else.
Both groups have the sponsorship of the Alzheimer's Association of the National Capital Area. My current group is one of the more established groups and despite the recent departure of the former leader continues to the great benefit of all of us who attend. The group meets during the day at a local church. As one might expect, those who attend are mostly retirees. But many are also alumni. They have been through caregiving, but continue to attend to the great benefit of those of us who are now actively involved in caregiving.
They know the good psychiatrists for geriatric patients; the internists who can relate to dementia patients; the range of medications for psychotic episodes; the care managers who can for a fee help with a range of needed services, etc. etc. The facilities that will take Medicaid if you're close to needing that. And on and on. Perhaps, most importantly, they can look at you and say with kindness and credibility... "You are important, too. You have to take care of yourself or you will be doing no good for anyone."
I can't say enough about the value of people who have been through the experience and their willingness to still stay involved for the benefit of those of us who follow. But, I digress.
One of the members of the group, Linda W, has been taking care of her boyfriend/partner. His dementia has manifested itself with diminished communication skills and anger directed at Linda since she is the one who often needs to say something needs to be done or not done. Not an easy assignment and as she has said, "I do it because I didn't see anyone else stepping forward to do it." Not siblings, etc. She has lived in her house and he in his house.
Until, Jack didn't return from his evening walk. "Went missing." The terror of all Alzheimer's care givers. Linda launched a search. Notified friends and relatives to help. Put up posters. Worked with the local police. Notified the media, which ran a photo.
Lo and behold, about 2 days later he was found asleep on the street at least 12 miles from his home. No one will ever know the story, as Linda points out.
But, she moved in and began interviewing for a live-in caregiver. A couple of weeks after the incident she was able to find one she thought would work.
One of the things Linda suffered, which is what we all suffer, is guilt. Guilt that you didn't see "it" coming whatever "it" is. Freedom is one of the great losses that dementia patients sustain. The freedom to be, to come and go as he or she pleases, to eat what and when he or she wants. Those things all disappear with dementia and humane caregiving seems to put us right at the brink of making those choices for the patient. Anyone who tries to allow as much freedom can be had without danger to the patient will always run a risk. I, for one, believe the risk is worth taking, but I know from experience how difficult that choice is.
Even though our folks wear the Safe Return bracelets of the Azheimer's Association, there is still the frightening possibility that he or she could still wander off and harm could come to them in the minutes, hours, or days while they are gone.
It ain't easy.
I missed the first meeting in August of my Alzheimer's Support Group -- a wonderfully supportive gathering of men and women who have been and are sole and/or primary caregivers. This is the second group that I've been involved with. My first one was a new group begun by a wonderful former geriatric nurse. When she decided to leave as leader, the group began a series of downhill runs with individuals who verbalized a commitment to Alzheimer's patients and care givers, but whose behavior suggested a commitment to something else ... anything else.
Both groups have the sponsorship of the Alzheimer's Association of the National Capital Area. My current group is one of the more established groups and despite the recent departure of the former leader continues to the great benefit of all of us who attend. The group meets during the day at a local church. As one might expect, those who attend are mostly retirees. But many are also alumni. They have been through caregiving, but continue to attend to the great benefit of those of us who are now actively involved in caregiving.
They know the good psychiatrists for geriatric patients; the internists who can relate to dementia patients; the range of medications for psychotic episodes; the care managers who can for a fee help with a range of needed services, etc. etc. The facilities that will take Medicaid if you're close to needing that. And on and on. Perhaps, most importantly, they can look at you and say with kindness and credibility... "You are important, too. You have to take care of yourself or you will be doing no good for anyone."
I can't say enough about the value of people who have been through the experience and their willingness to still stay involved for the benefit of those of us who follow. But, I digress.
One of the members of the group, Linda W, has been taking care of her boyfriend/partner. His dementia has manifested itself with diminished communication skills and anger directed at Linda since she is the one who often needs to say something needs to be done or not done. Not an easy assignment and as she has said, "I do it because I didn't see anyone else stepping forward to do it." Not siblings, etc. She has lived in her house and he in his house.
Until, Jack didn't return from his evening walk. "Went missing." The terror of all Alzheimer's care givers. Linda launched a search. Notified friends and relatives to help. Put up posters. Worked with the local police. Notified the media, which ran a photo.
Lo and behold, about 2 days later he was found asleep on the street at least 12 miles from his home. No one will ever know the story, as Linda points out.
But, she moved in and began interviewing for a live-in caregiver. A couple of weeks after the incident she was able to find one she thought would work.
One of the things Linda suffered, which is what we all suffer, is guilt. Guilt that you didn't see "it" coming whatever "it" is. Freedom is one of the great losses that dementia patients sustain. The freedom to be, to come and go as he or she pleases, to eat what and when he or she wants. Those things all disappear with dementia and humane caregiving seems to put us right at the brink of making those choices for the patient. Anyone who tries to allow as much freedom can be had without danger to the patient will always run a risk. I, for one, believe the risk is worth taking, but I know from experience how difficult that choice is.
Even though our folks wear the Safe Return bracelets of the Azheimer's Association, there is still the frightening possibility that he or she could still wander off and harm could come to them in the minutes, hours, or days while they are gone.
It ain't easy.
posted by BK Kincaid at 6:40 AM
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