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Mom has been diagnosed with sundown syndrome. Our family doctor said to establish a routine that puts all the activities that require 'thinking' in the morning, and quiet, restful things in the evening. He said that trying to 'unconfuse' her won't work.
Mom is already having problems swallowing. Her esophagus muscles are not coordinated anymore. She is eating soft, easily swallowed foods and drinking Boost. She tells me frequently that she is not hungry.
I have made the house handicapped friendly, and I cook her whatever she wants. She tells me she is content.
I know I shouldn't, but sometimes I wish a fatal stroke or heart attack would kill her so she would not be dying so slowly. She knows what is happening, and tells me she is ready to die. I wish there was something I could do to help her. I am doing everything I can to make her comfortable, but still . . . . .
You know, I must have missed the memo when I was younger, because I honestly never even considered the scenario of long term dementia and how it affects our loved ones, and how it could affect me, my home, my marriage, etc.
It's horrible. I wish our country and our medical industry would put more emphasis on research and treatment. Maybe it's just me, but it seems like this problem is widespread and growing.
You can also call this hotline for help: 24/7 Helpline: 1.800.272.3900, which is the Alzheimer's Association helpline. Their site has good material on all sorts of issues regarding dementia. Alzheimer's Disease and Dementia | Alzheimer's Association Caregiving support is what the Alzheimer's Association is all about. I'd use that resource, and certainly call the helpline if I felt overwhelmed.
I do not think your feelings are unusual. It is hard to see a loved one move toward death. Your mom is probably taking meds that extend her life, but she will only become worse. I think you need to accept that she might become too hard for you to handle by yourself, so you need to find out how to get help when that happens. You can contact your local state office of aging, where a social worker might be able to guide you to services your mom qualifies for. Available services vary state to state, but this is a tax supported service. Your taxes have paid to establish this service; use it when you need to.
I think looking toward the inevitable future is hard. Please do take care of yourself in all of this. If you can get a supplemental caregiver in for a day or two, then please do so and take some time for yourself. Even if this is hard for your mom, do it so you can keep your sanity and peace. Ask for assistance from family members, and insist they help you even if they are reluctant. (If you have family members.) Often the task of caregiving in a family is offloaded to one member and others are reluctant to get involved.
I do think what you are doing is a lovely and valuable thing.
I am sorry you are going through this. My Mom started having trouble swallowing, too, and eventually stopped eating. Fortunately, no one suggested a feeding tube and even if they had, my siblings and I would not have allowed it. There was no point. At least your Mom says she is content. And you are doing all you can at this point. I don't think you should beat yourself up for wishing for a fatal stroke or heart attack. Many of us, including me, have been in your shoes and know exactly what you mean. A stroke or heart attack could be a quick death, rather than a long, drawn-out deterioration. Hugs to you.
You know, I must have missed the memo when I was younger, because I honestly never even considered the scenario of long term dementia and how it affects our loved ones, and how it could affect me, my home, my marriage, etc.
It's horrible. I wish our country and our medical industry would put more emphasis on research and treatment. Maybe it's just me, but it seems like this problem is widespread and growing.
You can say that again! The long, slow decline is agonizing for the person and their family.
You know, I must have missed the memo when I was younger, because I honestly never even considered the scenario of long term dementia and how it affects our loved ones, and how it could affect me, my home, my marriage, etc.
It's horrible. I wish our country and our medical industry would put more emphasis on research and treatment. Maybe it's just me, but it seems like this problem is widespread and growing.
It is growing because the boomers are aging. The oldest are now 70 years old. So I expect there to be more and more of it as the boomers move through their senior years.
Yesterday one of my husband's friends, a close friend since elementary school, suddenly died of a heart attack. It's been a difficult loss for both of us, but particularly for my husband. But we agree that it's better to go that way than a long, drawn out, dementia. That's such a horrible way to die for the person and for all those around them. So I understand why the OP would wish for a swift death for her mother.
Can you look into palliative care? There may be a nice sedative for sundown syndrome. Sundown syndrome is awful...seen it, worked with it, I find distracting the person helps to an extent, other times it's like a work out. Very, very, difficult. I am sorry you and your loved one are going through this.
It is growing because the boomers are aging. The oldest are now 70 years old. So I expect there to be more and more of it as the boomers move through their senior years.
Yesterday one of my husband's friends, a close friend since elementary school, suddenly died of a heart attack. It's been a difficult loss for both of us, but particularly for my husband. But we agree that it's better to go that way than a long, drawn out, dementia. That's such a horrible way to die for the person and for all those around them. So I understand why the OP would wish for a swift death for her mother.
Well, my husband and I are younger boomers, in our fifties. So what we're seeing is the parents of our friends - and our parents - going through these long drawn out declines.
Honestly, sometimes I wonder if we've really improved our lives by improving life spans. Seems like for most people, the last two years of their lives are horrible for everyone.
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