To visit or not to visit...I don't know anymore.

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So my mom took a big step down the dementia road last Friday night. By morning I, her daughter, was now her good friend. After a walk she wanted to take a bus and the streetcar to go home...you get the picture. When I visited on Sunday it seemed like my presence there created more confusion for her. The CNA said she had a great morning. I visited a bit but she seemed depressed and when I went to go home she assumed she would be going with me since she was not in her home and I think I was familiar. We had a big problem with transitioning for me to go home and her to stay. I said goodbye and it seemed like she went back in with the CNA but then they came through the door again...my mom in the wheel chair saying she was going home with me. The CNA said she suddenly stood and nearly fell trying to get back to the door to go with me. She has the strength to do this new behavior of suddenly standing but can't maintain standing and will fall if someone isn't right there to hold her up.

I don't know what to do to make this easier for my mom. I would like to visit her but in a way that doesn't create more confusion for her. I usually just go along with where she is at...I'm fine with being her good friend and sometimes her daughter in her mind. She just started all these new behaviors of jumping up to go to an imaginary doctor's appointment or imaginary church (not on Sunday) or imaginary shopping trip appointment. All this jumping up is now making her back hurt worse, and I'm afraid we might have to add more pain med.

I don't know what to do.

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visited 88 year old mom in an assisted living facility with dementia care. went to visit her and she wants to come home. it is heart breaking and I wish she would pass quietly in her sleep for her and for me
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My heart goes out to you, tltimme. I'm sorry for all your sadness the last year. It seems like there are no really good answers in this situation. You just do the best you can and try to focus on what you are able to do rather than how inadequate we all feel at times in this situation.

I know that if my mom was rational and able to control all of this, it would not be her desire to consume my life with her problems. All of us want to feel significant and loved. My mother no longer knows how to go about getting that need met in a healthy way.
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elizabethgrace, letting go is hard for me as I freely admit that I am a control freak. Even though I am the youngest and only girl of three, mom has always referred to me as the fixer. I am logical, analyze things throughly and get things done in a organized manner.......except this past year when mom got so bad so quickly. I think I have cried more tears in the last year than I have my entire 50 years on earth. I wanted to care for her here at home, but realized several months ago that I was short changing her as she deserves the best care possible. Plus I could start to feel the beginings of resentment. I don't want to waste whatever time I have left with her feeling resentful or guilty.
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tltimme, again there is a parallel to our lives. I've become much closer to my brother, as well. Because we live 7 hours apart, one of us has to do this caregiving thing by ourselves...and now it is my turn. When my brother had responsibility for Mom, I tried never to criticize. He's returning the favor. He calls and encourages me.

Let me know how that "letting go" thing goes for you. :) Even this afternoon I was telling my husband the same old stuff trying to talk through the guilty feelings. Rationally I know that I can't fix anything and that at times my presence just causes her anxiety, but it's hard to let go.

My situation is compounded by the fact that Mom has been mentally ill (but high functioning most of the time) for 30 years - since I was a young adult. Honestly, she's just worn me out after all this time.
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Part of me feels guilty for not being there every day or so, but as my brother reminded me, mom really has no concept of time anymore so she isn't upset when I don't show up every Tuesday. As I mentioned the one good thing that has come out of all of this is a much closer relationship with my oldest brother. We were not close as kids as there was 7 years between us, however, as we age that is less of a gap. I know that mom is safe and well taken care of so it's up to me to learn to "let go" .
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I also witnessed the "angry" moments to me from my Grandmother and backed off on visits. She also did the same to my mom who would come home crying. I encouraged her to stay away also. Grandma was always so sweet to the staff. Looking back, I guess it was OK since they were present 24/7. My prayers each night are for all the dedicated caregivers.
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tltimme, it is validating to hear that you go through the same with your mother, although I am sorry that anyone has to live through this.

Last week one of the staff asked Mom if she'd like for them to call me to pick up something for her at the grocery store. Her response was, "NO! Don't call her! She always gets mad at me!" Thankfully they know who is always mad.

As my visits decreased, so did her absolute dependence on me. Her physical therapist reminds me that the more I do for her, the more she declines and becomes unable to do for herself. I was in the role of anticipating her needs and wants, so she didn't even have to verbalize them. It's hard to watch her do something that I could take away from her and do in a nanosecond, but that really isn't helpful to her. I was a big part of the problem. And I made myself an easy target for her frustrations.

I'm sure this phase will end. Things are getting worse. Sometimes she doesn't know me or my brother. But instead of being heartbroken over this, which is what I expected, I am comforted by the fact that she's not grieving about missing anyone. She's living in the moment.

I agree that we need to keep an eye on what is going on at AL's and NH's, but just seeing my mother's smile when one of the staff shows up lets me know that she feels safe and at home there.
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elizabethgrace, goodness your response could have been written about my mom by mom. Mom recently moved to assisted living Alzheimers facility and as you said when I visit she is miserable, unhappy and always complaining to and about me. But let a member of the staff come around and it's hugs and kisses. I've realized that I need to step away and not visit every other day. It's better for me and for her. The staff keeps me up to date on her doings and moods, plus I find that visits are actually a little easier when I only go once or twice a week.
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I loved SafetyBunns response - keep visits short and "DO" things instead of attempting involved conversations. Trying to make conversation with my mother makes her anxious, because that is when she realizes that she has no memories - not even from an hour ago.

When my mother first moved to the AL close to me, I took care of everything for her. She called me day and night. She vented all of her frustrations to me. Every call felt like she was accusing me because she was unhappy. I jumped at every demand and lost sleep for the things that I could not fix. Finally her therapist suggested that I cut back on the visits and ignore the calls at times. Gradually she started adjusting.

It's sad that when I'm with her, she's miserable, but when the activities director at the AL walks up to her, she lights up. That happened last week when I was visiting. But I'm thankful that she does love the staff, even if she's always aggravated with me.
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You have to keep up the visiting. The more you visit the better. Even the best nursing homes have to be kept under your watchful eye. My dad spent six weeks in one and had dementia, but still had moments of clarity. He cried the first time he realized that he wasn't going home. I ended up convincing my mother to get him out and bring him to my house where we cared for him until he died. My siblings were angry that we took him out. I know that nursing homes are a necessity sometimes, so impromptu visiting is a must. Watch the meds they are giving her too and don't worry about it when she says she wants to go home. She needs you to be her advocate so you have to put your feelings aside. I feel for you and I know it's a tough road to hoe. Find time to take care of yourself too. That is also a must!
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