My mom is going downhill. She IS remarkable for 93, and I know it. But she is not my mother anymore -- not the woman I have known. We have had a loving and hard relationship (of course -- the whole nine yards). But what I am finding is that I am very tense when we are together. I cannot relax. I feel like stone so often when we are together. I am seeing a therapist as I know I am grieving the loss of my mother, but why can't I soften? I know I see the face of the disease, and we are facing another place of decrepit downturn. She won't shower. She wonders why she can't find my sister (who totally ignores my mother, and gives her nothing), and tonight she was sure she was living in Vermont. She lives in Florida. I think the reason why i am strung so tight is I never know what will happen next, and I know we are not at the hardest part yet. I am not hugging her enough, touching her enough. I know I don't do enough even though I am doing the best I can. Does anyone else ever feel like this? Stony, when you want to be soft? This time is the last of it for us, and I can either love her a lot and express that or stay bottled as I am. So much of what I want to do for her she refuses. I would so love some understanding and KIND advice. No flaming please, please. I cannot take it. I am hard enough on myself.
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You said she's not your mother any more. That is correct. What if she were a stranger, someone you agreed to care for, but not your mother? Try to see her that way, and compassion will come easier. You are a good person. Good luck.
Sounds like you desperately need a break or someone to talk to to vent and reassure you it's okay. Can you get some help or reprieve.? Hire some outside help to babysit mom for a few hrs a week so you can get away? Respite care for a few weeks? Some friends or volunteer senior companions that can visit mom? Friends you can talk to, come over for tea, lunch so you can unload?
Our hearts want it to go back to the easy times when they were happy, healthy and independent and had a life outside of ours. Hard to look at them everyday and know that won't happen and everyday they need us more and more.
I don't know how you come to terms with it. We grieve about having to sacrifice our own happiness or happy thoughts, time, peace,family, friends to care for their needs or be "on alert" for what comes next.
It's an everyday struggle for me. I'm not full time caregiver. I do my best to read, get support on this site, learn from others, and steel myself to accept what is, hold my breath when I visit, be as patient, loving, as I can muster, and then reward myself when I leave until the next time.
Counseling may help. Try to join a free ALZ support group in your area. They meet at hospitals, care facilities, churches, and all are welcoming I believe and can put things in perspective and help you navigate this journey.
It's a pathetic thing, but the one thing that still makes me want to heave is this silly little routine she does before night-time. I'm ashamed for her. I shouldn't be. Nothing dreadful: she has a small cuddly toy elephant that she likes to keep with her at night (yes, I know, harmless enough), and when she's tucked in and I hand it to her (she'll have been looking round anxiously for it) she says goodnight to it and then pretends it's saying goodnight back to her, in a different voice.
It's completely harmless, it's a little joke that she enjoys, that's all, just play along... - and I CAN'T BEAR IT. Urrrggghhh!
Now I'm ashamed of myself for being such a po-faced miserable mean hag. I'm working on it. Clenched teeth and a tight smile so far, but believe me that's progress.
I'm glad you're already feeling better; I agree what a huge difference it makes just to know other people understand what it's like. And I'm glad you were able to call on your mother's own advice to you to help her now - that must have felt wonderful, for both of you. Don't worry if it gets hard again from time to time, practice - I hope! - will make perfect? Getting there, getting there… x
We have had marriage counselling on and off since before we married. One thing I learned is that he is "that way" - the collection of habits and traits that drive me crazy - and he is going to continue to be "that way" forever. I have started to love a few of those traits. Others still bug me, but now I understand that they aren't going away. So I get bugged, and I get over it fairly quickly.
I share your desire to be a better, kinder wife and caregiver. Booklover recommends videos from Teepa Snow which teach the caregiver to understand the dementia experience from the patient's side. She recommends gentle, patient approaches that work to eliminate resistance.
That sort of pisses me off! One more job that I have to do. One more way that everything is all my fault! Then I get over it. More work but fewer fights and more love sounds worth it to me. Look for "Teepasnow" dot "com" for info.
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