A longtime friend committed suicide today - he just snapped, screamed at his wife who was fairly far along in dementia, in the constant repeated questioning phase, and hung himself. In their eighties, longtime marriage, and he had no help caring for her.
I would like to find something that has been written about how very hard the caregiver role is, to help other friends understand what he had been going through. My journey is long over (my husband died in 2011) but I remember how here, we had a button that said "I will help you, but first I must scream." Can anyone recommend something that describes how awful it can be?
I think the first paragraph of your post said perfectly, in a very few words, how terrible caregiving can be. But thousands of pages--or books--could be written on this subject. Unfortunately, it seems that no one is interested in hearing this message.
I don't have something that someone else wrote, but I have a few ideas of my own.
The first thing that comes to mind is how many caregivers die before the person they are caring for. I'd really like to know how many caregivers do commit suicide. Or how many die from medical problems that are neglected because they just don't have the energy to take care of every need of two people--or because they simply don't care any more. I lost a friend that way.
The next thing is how many caregivers are on antidepressants and/or anti-anxiety meds. Also, when studies are done on stress, what they compare other stressors to is being a caregiver for someone with dementia. It's pretty much a 10+ on a scale of 1-10--the gold standard for stressful situations.
Think of taking care of a 200 pound toddler, who is bigger and stronger than you are, and whose ego and ability to say "no" don't seem to be at all impacted by the disease. A large toddler who wants to drive a car or work on the plumbing (without turning off the water) or handle the family finances. And this just goes on and on. And on. Year after year after year. While friends and family seem to forget your name and phone number.
Sorry. I could go on forever.
Whatever people come up with on this subject, I have a few people I'd like to send it to.
Briegull. I am so very sorry. For your pain. For your friend who had no one to turn to and could not bear his pain. And for the wife who never asked for this disease.
I haven't been able to get a local news story out of my head. A couple in their 80s both had dementia and would ask neighbors for help with appliances. The husband showed up at neighbor's door holding bloody knife asking for help because his wife wouldn't get up. I don't know if we can explain the despair. I helped care for my dear friend and MIL and thought I understood. Not even close! Jan K - you expressed what I've been having as a pet peeve. People act like we should just sweetly take care of them like that stupid woman says in the Namenda commercial. They think it is no different than caring for a toddler. Well he is 6' tall, over 200 lbs. You can't just pick him up and pull him out of danger. A toddler's punch couldn't hurt you very much. A toddler can't push you around. A toddler keps gaining capability. There is light at the end of the tunnel. Our spouses keep losing capabilities. So you feel like you can't complain about today because tomorrow is going to be so much worse! A toddler doesn't curse you out and threaten to beat you up or kill you when you change its diapers or try to help it do something like tie its shoes. And if the toddler did curse you out, the threat would not be credible. There have been a number of murder suicides in my area (Southern Cal). It is heart breaking to think some of us can't see a way out. My father worked in Adult Protective services back in the 70s. I wonder if they can help in emergency situations these days. But many of the spouses wouldn't know to call. Maybe there is a story there to suggest to my local newspaper...
When I reread my posts and my struggles even though it is heartbreaking for me I realize others have to deal with even far worse situations. Being called names is one thing but violence brings it to a whole other level I cannot even imagine you are saints.
Thank you so much for your comments. I AM trying to find something already published, that I could cite in a private (but large) Facebook page - an "authority" although I know full well that the real authorities are here, pouring their lives out to each other. I can't express how much this meant to me back in the day that I was dealing with it. The situation we are dealing with now is sad. He didn't quite DIE in his suicide attempt, was taken to the hospital where he lies, neck broken, completely comatose, with grieving daughter having to figure out when to pull the plug. Neighbors are tending the wife in shifts - this is on a mostly-summer-colony island - and they may or may not have a lot of experience with dementia. I want everyone there to understand how terribly exhausting and depressing it is to be in his situation. Given that they were both in their mid-eighties, he didn't have much hope of an "AFTER" - the talisman that we younger ones kept holding out as a possibility.
Many who have been here for a while remember our member whose dad killed his wife and our member's wife then killed himself - all due to stress from multiple directions. We all know the stress of caring for one, just think when it is two (he watched his DIL while his son worked). Age, illness (your loved one and your own), lack of support, and other issues makes it tough dealing with this disease.
When there seems to be no future but maybe a financially spent one, no hope, no life - depression takes over.
briegull, I came across this article recently. It has a bitter tone, and there's bad language in it (maybe to shock readers not familiar with Alzheimer's). For what it's worth:
That's one of the better articles that I have ever read on this subject. What strikes me as being the most poignant thing about the article is that it is so very REAL...
I finally read it. Guess I am a prude or something because I just can't read articles with profanity in it. I did make it through but it was really hard. For me using the 'f' word took away from the article although I know probably the majority will think it needs it to get attention from people.
Charlotte, I agree with you 100%. I bristle at the offensive language. But, I do also agree that this article is a great depiction of the enormous stress and hardship that is placed on the caregiver. Of course...nothing compares to the torture the victims themselves go through.
I know m-man did an interview with Maria Shriver for the Alzheimer's Project about the stress of caregiving and for some reason I also thought he wrote an article (or one was written about him and his family) on the difficulties of caregiving.