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Jenf63 Asked January 2019

My mother has dementia, severe aphasia and is extremely apathetic. Visits are draining, and she doesn’t seem to enjoy them. What to do?

I try to visit my mom (who lives in a memory care facility) at least twice a week, taking her to church (which I would not do otherwise), taking her to dinner or bringing her to my house where she can see her dog (whom I have had to adopt). I work full time at a demanding job, and this takes a significant chunk of my remaining free time. I do this so that she will have at least some modicum of “a life” - she refuses to engage in activities where she lives, despite their efforts to find things she would like. It’s basically “my way or the highway,” which is how she’s always been, even though it doesn’t serve her well. She clearly prefers to go with me, rather than stay in the facility...but she does not seem to enjoy any of it. Because of the aphasia, we literally do not talk. At this point, she can’t really even answer yes/no questions, let alone open-ended questions about her day. She also doesn’t seem to be interested in any information I have to share about my day, my family, current events, etc. And these visits require a LOT of time/effort on my part. For example, I have to leave work an hour early in order to bring her to my house for dinner - and her church is 45 minutes from where she lives, necessitating that I give up a good 4+ hours of my free Sunday in order to get her there, participate in the service, grab lunch afterwards and get her back. I am so tired, and I would really like more time with just my husband and/or our kids. I don’t think we’ve had a major holiday without my mom in at least 12 years, and she’s joined us for other major events (eg., college graduations) despite the need to make special arrangements for transportation, etc. She has always acted as if this were the very least we could do for her, rather than acknowledging and appreciating the effort. And, of course, there is all the administrative and care coordination work that goes on in addition to the visits. How often should I visit? Are there any suggestions as to how to cope with the apathy and disinterest? Thanks!

JoAnn29 Feb 2019
Really, Dementia patients days just run into each other. I doubt if your Mom knows how many times you visit or what days. My Mom visited my Aunt (SIL) who had ALZ at her AL. My Mom went to leave and on the way out ran into my other Aunt (SIL and other Aunts sister). When the sister got to my Aunts room, she said "So Peg was here to visit" My Aunt said "No, Peg was not here".

Jenf63 Feb 2019
Thank you, everyone, for your answers - so helpful and much appreciated!

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JoAnn29 Jan 2019
At my Moms AL someone from the Catholic Church had a service. Mom was Methodist. I told the staff to allow Mom to sit in. Church is Church.
If Mom doesn't appreciate your endeavors, don't do it. Like said, take the dog to see her. The other residents would probably enjoy the visit. I used to take my grandson to the AL. One of the men liked throwing the ball to him the ladies thought he was so cute.

People with Dementia cannot appreciate. They lose the ability. They can become self centered. If Mom doesn't seem to enjoy going out or joining in, thats her problem not yours. You can't be all for her. Its not your fault she has this desease. I think with all you have going, visiting once a week is enough. Your family is priority. Your children will be gone in a few years. Take pictures, show Mom. At Moms AL they had holiday parties and birthday parties. Entertainment.

lealonnie1 Jan 2019
A real conundrum......I feel your pain, my friend. I try to visit my mother once a week at the Assisted Living Facility where she lives. I used to call her 2x a day, then cut it down to once. All she does is complain, she's only happy when she's SoSoSoSO SO sick, which she really isn't. She never has life threatening issues, but loves going to the hospital and getting attention from whomever she can. The calls and visits are very stressful for me, esp since I'm the only child and in charge of EVERYTHING regarding her finances and her care. My dh and I got married in 09, I had to move the folks out here in 11, and we've never had a holiday since without my mother wreaking havoc. Dad passed in 14 but he was a delight and also kept my mother in line. Anyway, when I'd talk to the nurse at the ALF and express my frustrations, you know what she'd say? "Don't worry about your mom. Keep your calls and visits to a minimum......leave it to US to care for her. That's what you are paying for."
Truer or better words were never spoken. Why are you breaking your neck to do things for a mother who doesn't appreciate it anyway? Take my nurse's advice and keep the visits to a minimum. Allow the staff to do what they're paid to do, and allow yourself to enjoy your free time.

Best of luck!!!

Ahmijoy Jan 2019
I would have to say that if Mom doesn’t enjoy what you’re doing and it takes valuable time from your family life stop doing it. Don’t bring her out for dinner. Is this the same day as church? Is it disinterest or ungratefulness? If it’s disinterest, that’s all the more reason to stop putting yourself out. If it’s just bad manners and not being grateful for your efforts, there isn’t much you can do to change her and it’s up to you to decide whether or not to keep on with it.

Facilities often have nondenominational services there. If she’s of the Catholic faith you may be able to find a local priest to come. You can also cut your visit to once a week. Facilities often will allow you to bring the resident’s pet in to visit.

When you are no longer trying to give her a semblance of a life she may decide to join in a few activities. But I must say that my mom was the same way. She sat in her chair all day in Memory Care and very seldom joined in any activities. She would occasionally sit by the Nurse’s Station but did not interact with any other residents. She had Macular Degeneration but wouldn’t even turn the television on to listen to it. She was a complete and total recluse, which was not far from what she was when I was growing up. I tried taking her out a few times but since she was a stumble and fall risk, it was stressful for me and she became stressed by leaving the facility.

If Mom can understand you, explain that you have gotten very busy at work and will visit when you can. Check about bringing the dog and the church services there.

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