I was talking with a friend this morning who is further along on this journey with the monster who dances in the dark corners of our brains (dementia). Eventually the topic of feelings of worthlessness came up. Mainly how it became more difficult to push those feelings away as you lost more and more of your abilities. You start to feel as though you can do nothing well (or at all), that you are in everyone's way, and, ultimately, worthless. I thought about this for awhile, mainly from my own diminishing point of view. Soon I was thinking back over my parent's journeys through dementia. They each came to feelings of worthlessness. But to me, that was never true. I valued every day I was privileged to spend with them. Was it easy, no. Did I get aggravated and not really understand what they were going through, yes. Did I ever for one minute believe they had no value, absolutely not. They continued to give something that couldn't be measured or quantified. They gave me a parent's comfort. Even in the darkest days I could feel the warmth of their care.
This is something I will never feel again. I still have the comfort of my wife's and children's love and I treasure each, but it is different from a parent's care. Just as a spouse's love is different from a child's love and comfort. Each is precious but neither can be replaced with the other when gone.
Although my parent's last years and months were horrible and I was actually relieved for them when they passed (although I had a great feeling of guilt over the feelings of relief) I never thought their worth diminished. I was able to be with each right up til they drew their last breath, holding their hands, giving and receiving comfort, leaving nothing behind.
I guess what I'm trying to say in this long, rambling post is fight to maintain your feelings of worth as long as there is a ational thought in your brain. Even if you are in a non responsive state, you mean a great deal to those around you. And that can never be replaced.
Be well,
Randy
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Poppygail
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Thank you for this post . My husband has Alzheimer's and I'm ashamed to say that I THINK on one occasion I did say something like "you're useless" Of course did not mean it (I was at the end of my rope - no excuse) but I apologised as well as I could get him to understand Then one morning he said himself "I'm useless"...really upset me , told him I didn't find him useless but I wonder if I put the idea in his head. Oh dear, sorry for moan feel helpless though I try to do as well as I can -most days!!! I wish I could get husband to understand your feelings. I love him very much.
Don't be to hard on yourself, being a caregiver/care partner is one of the hardest things in the world to do. You're trying to meet his everchanging needs & wants (demands) and help him maintain a feeling of self/value all the while having little or no help and losing the person you love inch by inch, as well as (often) parts of you. Remember, he sounds as though he is farther along than I therefore he probably has considerably less understanding which means you often will be unable to communicate what you truly mean. I anticipate being exactly like him at some point.
You essentially have to grieve the loss of your loved one while caring for them and continue/relive that grief after they pass. From your standpoint, as well as his, it's dang near impossible. Just do your best, reach out for help from family, friends, docs, and agencies. Then give yourself a break, it sounds as though you love him very much and are doing the very best you can for him.
HI Poppygail, thank you so much for taking the time to reply, yes my husband is probably further along on the path than you, I hope you progress slowly, slowly, or even each a sort of standstill Best not to pre-empt (DIFFICULT I KNOW!!!) It is perceptive of you to use the word demands to describe the changing nature of the illness. I am (in my own way ) doing the best I can, I have a support network but still find although folks are kind it is really up to me....for now . I'm not complaining, grateful that I am able and I will call upon help when needed, even if it's not quite given with the understanding I had hoped for.
Things not too bad at present and husband out of the blue has said he would like some friends to visit, a real step forward. He's been so reclusive that he was even awkward when we had to have ness. engineers in(e.g. gas service etc.) I'm going to "strike while the irons hot" and phone some long suffering souls to see if visit can be set up. keep your fingers crossed for me
Your reply was so kind and I try not to be too hard on myself...honestly!
That's absolutely awesome that he wants visitors, a huge step since he has been so reclusive. I wish all the luck in the world in this endeavor.
I have found that unless folks have a firsthand knowledge of caregiving for the pt with dementia or have a mild form themselves, they have a very difficult time understanding of the true situation. It's not really their fault due to the taboo and fear of dementia in themselves. But that really doesn't make yours or your husbands life much easier does it. The best way I found to overcome this is to educate them as much as possible. It won't always work but any improvement is better than none. And, as the old saying goes, knowledge is power.
Thanks for your encouraging reply and good wishes ..It is good to have met with someone who truly understands. Will let you know (if you want) how I get on re. visitors!
Hi Randy, Good morning to you too. Don't know where you live, I'm in Wrexham, N. Wales UK, it is 10 am here so hardly the wee hours!, though I have experience of them!!
Didn't realize where you lived, small world huh? I live in eastern US in Northern Kentucky. It was ~4:30am when I last wrote. And I can imagine your experience with the wee hours recently!
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