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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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I experienced a little of this myself with my own mom when she started to really decline...honestly, when I thought about it, I realized that I was unconsciously distancing myself from her in preparation/expectation of her death.... For me, I was always tense and on edge, expecting.. and fearful of.. her dropping dead on me any minute. I lived in tension and fear of walking into her room one morning and finding her dead...something I seriously dreaded. I made an effort to stop distancing myself, made an effort to be more affectionate and loving...while I still could. Your mind is trying to protect you from pain by putting a wall up. At least, that's what I figured. Make an effort to break that wall down, make yourself see it for what it is and get beyond it. I knew I didn't want my mom to die with me feeling that way, didn't want her to go without having given her affection/comfort and hugs before she passed. Unless and until that happened, it was my duty to simply be as loving and kind as I could be. When she goes, I'll deal then. No sense in sweating what you can't change. At this point in time you just live day by day...that's all you can do.
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Here some hugs from me....I'm having the same feelings as well. I love my parents! My parents annoy me....I love my parents.....why won't they listen to reason?.....I love my parents.....I don't want to call and talk to my mom and hear the same stories over and over....I love my parents.....what will happen to me if/when I start showing signs of Alzheimer's too....I love my parents....how can I support them when I work full time and live three hours away....I love my parents. Thanks to everyone who is here to support and not to criticize us for our feelings. Lord, send us peace.
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youre playing multiple roles. sometimes daughter / son , sometimes nurse, warden, spiritual consultant, patient advocate ,etc. its enough to make anyones head spin. i suggest reading all you can about dementia. the unknown is always frightening. i always figured that towards the end id be dealing with someone with the mental capacity to sit and pet the fur off of a stuffed animal. then having a better mindset id go back to my room and pet my own stuffed animal . yay, me time..
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You are good and wise to want to soften your heart. You are also wise to harden your heart, because you need the protection!

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.
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Thanks so much everyone. I read these tonight, after a night when my Mom called crying and lonely. And I was able to say "I love you so much, and wish I could make it better. But all I can do is tell you I love you, and I want to know why you are sad. And to tell you what you always told me -- this, too, shall pass. You'll feel different in a while, but I am here right now and love you." She did calm down, and did feel better. Thank you, thank you for all the advice and counsel above to me. It matters, and I am very grateful.
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Good posts above. I feel that way too, "Stoney" and detached and it takes every ounce of effort to spend time or even telephone my mom because I dread what will be on the other end. Good days you breath a sigh of relief, bad days you hurt for them, grieve, get angry with them and hate yourself for rising up in anger when you know in your mind it's the disease and they don't mean to be needy, irritating or hurtful.

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.
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This is so hard on you (really? Do you know people who'd think this a good time to start lecturing you? Yikes!). All I can say is that what I've tried, when I really can't bear some part of how my mother's behaving is: pretend she's someone else's mother who I have to comfort and be kind to for ten minutes/a couple of hours/that day.

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
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My husband and I actually went out tonight and we've been planning this date for months. The phone rang as we were leaving -- it was Mom and I did not answer. Once we closed the door, I decided I was taking this time for just us. It was almost as good as a vacation. Another lesson learned. Sometimes, you gotta just let it go. I realize I feel as if I am on call 24/7 and it's up to me to manage that. So am feeling more alive and grateful to all of you who have written. So glad I found this group!
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I sometimes hate my husband, after a battle about getting out of smelly, wet, clothing, and feel so resentful and mean; this is a terrible way to feel about someone I've been married to for almost 49 years. I just want him to "allow" me to take good care of him, and then I can "love" him, as I want to. When he does finally wear down and let me put on clean, dry clothing he will sometimes thank me, and he becomes that man I can love again, and it breaks my heart.
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Tonylou, your story touched me. I'm still at the point where dementia troubles are less common than good days, but I can see the future, and it looks like your present. I think most married people have mixed feelings toward our spouses. We have to compromise and give up so much for them, even without illness. I know myself that I don't pay attention to how much I love him, and that only gets worse when we are in conflict.

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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