Yesterday I found a caregiver book I had never heard of, with an apt title of "Into the Storm", edited by Collin Tong. Each chapter was written by a different person, telling their story of caregiving.
Several passages resonated with me, and I wanted to share them. (My comments are in parentheses after the quotes.)
Speaking of the difficulty of dealing with people who may mess up and not remember your name, this caregiver said: "There are worse things. Like those of us who don't have dementia forgetting their names and forgetting them." (This should include forgetting the caregiver, because that often happens, too. I think every family member and friend who walks away from people dealing with dementia should have to read those words.)
One caregiver found a very simple practice that helped her to cope: "When I felt emotionally strained in some way, I'd sometimes remember to stop whatever I was doing, put my hand on my heart center, and repeat silently to myself, "May I have compassion for myself. May I have compassion for myself."" (Oh, my. Yes. We do need to have compassion for ourselves, just as we do for the person we are caring for.)
One caregiver said several things I appreciated, including:
"...family caregivers can be divided into two groups. The first understands that nothing is predictable and realizes how this leads to exhaustion from battling a disease that keeps changing the rules. The second group would be those who think they have the situation under control, and this group can be generally referred to as delusional. In time, pretty much all of us will end up in group one."
"This is the toughest lesson. You, the caregiver, have a life that can and must extend beyond Alzheimer's. If you let the demands of caregiving take you down, you will have failed. If you let the demands of caregiving ruin your health, you will have failed. If you let it rob the future that will come after caregiving, you will have failed."
"...of all the things that being an Alzheimer's caregiver demands, this may be the hardest to accept and the most important to learn: you and your life must continue."
(Hard words, but I needed to hear them. Over time, I have become completely enmeshed in the role of caregiver, and have not taken care of myself nearly as well as I have cared for DH. However, I would rather say "you will have lost", rather than "you will have failed".)
Anyway, this made me wonder--what would I say about these years of caregiving if it all had to fit in one chapter? (Obviously I have some trouble trimming words!) What would you say?
I don't know what I would say about the years of caregiving...but I don't like those comments that if you end up taken down, with your health messed up, and with your future compromised, that you have failed. Excuse me? Alzheimers does a number on the caregiver, as we all know. Just because the disease damages us doesn't mean we have failed. It is like having battle wounds...we just have to recover from it, and then move forward.
Elizabeth, I didn't care for the word "failed", either. But the author's harsh words gave me a much-needed wakeup call.
At one of the first caregiver support groups I ever went to, an older gentleman came up to me, and with tears in his eyes, told me that I needed to take care of myself, too. I didn't know what he meant at the time. Wasn't my husband the one who needed caring for? He was the one who had just been diagnosed with a terrible disease.
Well, several years ago it started to dawn on me that destroying the caregiver is a very poor outcome. And I've come very close to doing that. I've now spent nearly one-fifth of my entire life as a caregiver to a husband with dementia. And it has nearly killed me. I mean that literally. And while I don't feel that I have "failed" as a caregiver, I don't think that destroying the caregiver has been the best outcome, either.
Jan K. I did not care for the word failed regarding caregiving but what resonated with me was the quote "you and your life must continue". As I look back on the caregiving years, I think that deep, deep down I knew that I had to survive this somehow but I was not quite sure how. I believe that many caregivers in our situation become lost in the disease before they realize this and sometimes then compromise their health in the process. Sometimes this becomes a wake up call for them as they realize that it may kill 2 people. Neither my kids nor my siblings to this day really understand what the disease did to me but that is okay. It nearly drove me bankrupt mentally, physically, emotionally and financially but the blessing is that it did not somehow by the grace of the Almighty. I am moving on and not looking back although I still feel somewhat guilty that I had to place him and the horror of the last 3 months. But I stop myself now from going there as I realize it is not to anyone's benefit. We all do the best we can. If we had known better we would have done better but we all have only so much physical and emotional energy and must deal with the cards as they are dealt.
"You and your life must continue." Yes, indeed. Life is inutterably altered, but it does go on. At the risk of sounding like a broken record, you just have to take it one day at a time, and grab onto that knotted rope once in a while when it all becomes too much. I think saving yourself has something to do with trying to do small things every single day that keep you nurtured...things that don't just add to the stress, loneliness, fatigue, etc. We have all posted this so often over the years, but it is so true.
Yes, CO2, looking back there were a couple things I would have done differently...but for the most part, I took care of both of us and I survived it. Your last few months were horrendous--I remember some of your posts. No need to feel any guilt--rather, I would give yourself a big pat on the back. You handled a tough situation well, and were (are) an inspiration.
"If you let the demands of caregiving take you down, you will have failed. If you let the demands of caregiving ruin your health, you will have failed. If you let it rob the future that will come after caregiving, you will have failed."
I understand that this sentiment is intended to be inspirational but I find it to be just plain mean. And replacing the word "failed" with a synonym does not change that. I would like to know the name of the person who wrote this chapter. (The book is an anthology; Mr. Tong is the editor.)
We have all heard that many spouses of dementia patients die before the patient dies. What should we call these dead spouses? "Losers?"
Perhaps it was only meant as "failed" as in "failed to survive?" Pardon my twisted sense of humour, Myrtle but I suppose that does make the dead caregivers "losers".
"If you let the demands of caregiving take you down, you will have failed. If you let the demands of caregiving ruin your health, you will have failed. If you let it rob the future that will come after caregiving, you will have failed."
I agree with myrtle and elizabeth, too. This way of expressing encouragement may work for some, those who are driven to avoid failure, but it doesn't acknowledge that so many things are out of your control. I'm reminded of dieting or fitness "advice" that tells you if you eat that cookie, you've failed--which for a lot of people makes them just give up. I'd rather say that these are serious pitfalls to be aware of and to avoid if you can. And if you can't? Still hope and try to recover.
I’m with Jan K on this one. I have been thinking about this thread a lot. I understand that I have (theoretically) a 70% chance of dying before my partner. If I do, I will not count it as my failure, nor should anyone else. After all we are all heading toward that last moment, and in the end it is inevitable.
But while my partner is entitled to good care, well so am I. I am the only one who can assure that my partner gets good care, from me and from others. I am also the only one who can assure that I get good care from myself and others.
Life inevitably is a compromise. My partner is getting good care. And I also have begun making sure I get good care. So maybe her care won’t be perfect. Maybe a few of her needs won’t be met by me. I know not “all” of my needs will be met by me either.
The failure, to me, would be if I neglected all of my needs on behalf of hers. If I were to lose my life or my selfhood by neglecting my needs, then I would have failed. I do not judge others
I don't know of anybody on these threads, at least as long as I've been reading them, who has neglected all their own needs on behalf of the ill partner. The problem is that it's usually so hard to get your own needs met when Al Z. Heimer is sucking up all the time and energy.