Confused and Stressed

momislife

Mom has been in MC for a year since my dad passed. It was hearbreaking to leave her at AL but she needed the daily care. It was the best decision since my sibiling and I all have families. Even though she can still dress herself, go to the bathroom and eat with others she throws a fit getting a shower from the aides. We have a camera in her room and I see her packing and unpacking her belongings so we keep minimal things in the room. She is talkative but I don't think the aides really push her to do activities. I try to fly in once a month to visit her and take her out of the facility to do things. My siblings live closer but when they visit they don't take her out of the facility and do things like shop or church which I think would really help. As her only daughter, I feel so guilty not living close enough to visit more often.

I feel torn if I should move her to a facility closer to where I live, so I can see her more often rather than being in a limited position. But I have a family and I'm not sure if I could handle all the additional stress. The anxiety of what to do next is killing me.

Anonymousjpl123

@momislife welcome to “here” but I am so sorry for the reason.

Moving from AL to MC is such a tough transition for everyone, even when absolutely necessary. Many of the behaviors you describe are very, very typical: packing and unpacking belongings, refusal to shower, won’t do activities. I read this and was like “check, check, check” about my mom in memory care. Like yours, my mom is very talkative but it’s been really hard for her. My point is that you may find she displays the same behavior wherever she goes. Also, since my mom went to MC last year I have been more than willing to take her out - sometimes too much - and I no longer can or do as frequently because it’s too hard for her.

So…some questions for you:

• do you think you will feel less guilty with her closer to you? My mom is 10 minutes away and I’m her primary caregiver (only daughter as wlel) and was racked with irrational guilt for a long time. I think it comes with the territory.
• Can you make the visits really count? Rather than trying to save her - which you can’t - could you find ways to really connect with her?
• Is her facility safe, is she being cared for?
• Is she really in a position to go with you to activities, and are you really in a position to visit 3-4 times a week?

My point is that being the caregiver with your siblings is so much more than physical proximity. In my mom’s place, one of her good friends has two daughters. One is close by, the other far away. But she sees both for different reasons. One provides regular check ins, but the other provides a week or 2 of undistracted, deep, quality, meaningful connection once or twice a year. When she speaks of her daughters she speaks of them the same.

Anyway I hope this helps. This board has been a lifesaver for me, I hope you find support and good advice here as well.

M1

Welome to the forum. Let me reassure you that what you are experiencing is common to many of us with loved ones in MC (my partner of 30 years has been there for two years now). She primarily isolates in her room, fidgets and packs things (ditto for having little in the room, we can't even have a laundry basket), asks me every visit when she can leave. I don't take her out, because I don't think I could get her to go back—I think it would make it worse. She is still continent though starting to have occasional accidents, and refuses to let the aides help her change clothes or shower. I can typically get her in the shower and in clean clothes once a week. She is hard of hearing and hates eating meals in a communal setting. She's an introvert, and MC activities are primarily aimed at people who can/are willing to do things in groups. She is having fairly frequent falls because she can't remember to use a walker. Fortunately the worst injury so far has been a whopping black eye a few weeks back.

I hope this just helps you feel less alone. There are no easy answers. I doubt if moving her would bring much change, and would probably make you feel worse instead of better. If you moved her closer to you, would your other siblings maintain visits? i would bet not, and then you'd probably feel worse about that. It's just a horrible illness, period. i wish every day for it to be over for all of us.

psg712

Agree with Anonymous and M1. Similar experience with my mom, who moved to AL two years ago and to MC this past January. It's becoming more difficult for her to leave the facility - seems to confuse and tire her. I take her to church on occasion but it is way overstimulating for her and she just kind of shuts down. The only place she seems to enjoy is my house, where she enjoys my DH's cooking, watches birds and squirrels in our yard, and pets my dog. But she is ready to go back to her place after a short time.

She's been rearranging stuff in her room a lot. Last week I came in to find her lamp and digital clock unplugged, several pictures taken down from the walls and set on the floor, books removed from their shelves and stacked in unsteady piles on top of pencils. I didn't ask. She won't have an explanation. She participates less in activities than she used to and also dislikes showering. She lives 10 minutes from me, but I still don't get in to see her as often as I think I should. Full time job and a family at home need attention too!

I think that the others have good points about your mom - it sounds like your thoughts about moving her have more to do with your guilt feelings and less to do with actual care needs for her. If she is safe and well in her current place, a move may cause unwarranted distress for her. There is nothing comfortable about watching someone you love unravel with this disease, whether you are nearby or at a distance.

momislife

https://alzconnected.org/discussion/comment/210482#Comment_210482

Really great feedback! Thank you for taking the time to share your experience! It really gives me some perspective and peace of mind.

momislife

https://alzconnected.org/discussion/comment/210532#Comment_210532

Its true. Thinking about her move closer to me is about my guilt not being there all the time. You are right not sure if I'd be able to see her even if she lived near me. What a terrible disease. How is your mom doing?

momislife

Yes its true. It would probably just make matters worse. There are no easy answers. Thanks for the feedback!