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LDcaregiver1 Asked July 2012

What do I tell my mother when she says no one calls or visits her?

My mother is in an assisted living residence located in the same town as my brother. She is well taken care of, happy, and feels she is in the best place possible for her situation.

When I call her on the phone (I live 1500 miles away) she often tells me that she never sees my brother or his wife, and that no one ever calls her or comes to see her. I know that she receives regular calls from family and friends, but she adamantly refuses to believe that anyone calls her.

I feel awful that she thinks that my brother and I have abandoned her and that we never call or visit. She often says that she forgets things because one day is the same as the next, and that there is no one for her to talk about her old life. I use her reasons for forgetting things as part of the reason she is forgetting that people do call and visit, but she insists that she would never forget calls and visits because they are so important. I purchased a journal and left it in her room for my brother, sister-in-law to sign when they come, but they refuse to use it.

Is this just my issue, should I feel badly about the fact that she feels abandoned? What can I do to help her remember, or should I let it go?

LDcaregiver1 Jul 2012
For clarification on some of the posts. I would love to have my mom living closer to me. I worry all the time about her well-being, state of mind, and happiness. I call her 3 to 4 times a week.
About 4 years ago before she moved from her home (due to a fall and broken hip), I brought her to my city to live in assisted living. I felt that was a test to see how she would like AL. At the time, it was impossible to have her live with us and as it was a very busy household (4 teenagers living in the home ), with insufficient room, no one home during the day and she was visually impaired. At first she was happy, then after 3 months she wanted to go home to her friends in the USA.
I live in Canada and had started the paperwork for her immigration to Canada. She refused to move ahead with the immigration process and then slowly her health began to fail. In order to immigrate she needed to have a physical and when she was finally ready (after a fall, broken hip and dementia), I knew she wouldn't pass and they wouldn't allow her to come. She would have been considered a burden on our health care system and because she has my brother in the US, she wouldn't qualify for compassionate immigration.
I know that there is a heavy burden of care giving for my mom on a day-to-day basis and I appreciate all that my brother and his family have taken on. I do feel guilt over all that he has to do and have difficulty asking him to do more (journal).
Thanks again for all of the advice/suggestions.

3pinkroses Jul 2012
Bless you for all you do - you are inspiring.

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seetao Jul 2012
My daughters and I have lived with my sister for several years, well before she was diagnosed with AD. Even so, she views us with resentment and feels our presence is controlling (we help with day-to-day living, provide a routine and home coverage, etc while I work and they are in school). There is no one else in the family who can or is willing to do this, but we do receive a lot of support in many ways like weekend coverage, a financial partnership, etc. We are as happy as possible with the situation and will stick it out as long as the disease can be managed at home, and we plan for the future as much as we can. This sort of living situation is not for everyone, and it took a lot of creative thinking to make it work. To me, this disease is particularly awful because the younger and healthier you are when you are diagnosed, the longer you can expect to live with it. There is no one answer or one way to live with dementia. I believe we are a part of this group in order to support and not preach at each other. What works for one family probably won't work completely for another, but there are nuggets of info and ideas we can share if we come to this with an open mind and heart. aberry said it best "We are all in the same boat with loved ones having dementia.....you just do the best you can do for them."

Upsidedown Jul 2012
I like the "journal " idea. Your brother and others should welcome the additional comfort it could provide your mother. Show your brother some of these responses, maybe it will explain the need in another light. Good luck!
Upsidedown

aberry Jul 2012
My mom in law has dementia also. She says nobody comes to visit or calls her (she lives in an assisted living center, that she picked out herself before she got worse). I try to remind her that we (my husband and I) are there every week, and we call her on the phone. Some of my kids also pop in on her ocassionally, but she never remembers anyone coming to see her. It is so sad, to see anyone go through this. She has always been a very negitive person, demanding people do what she wants them to do, etc...and this has only gotten worse with the dementia. We just take one day at a time and do the best we can for her.....we take her to all dr appts/ dental, eye check ups, out to eat weekly and even shopping......but she never remembers these outtings, and actually says we are making them up. She keeps asking the same questions over and over, esp.."Do I have dementia, and who said I do?" This is a terrible disease. She went through this with her husband also, (he was so sweet during this time to everyone), but she remembers him not knowing her etc, and I think this scares her too. We are all in the same boat with loved ones having dementia.....you just do the best you can do for them

3pinkroses Jul 2012
Terrimerritts - I think the original poster has obviously thought of her mom living with her or moving her to a closer assisted living. I think she is doing a great job as it is and has received many supportive posts and suggestions.

Not everyone can have their parents, grandparents live with them, but as many of your posts have stated = you have. Good for you, you never miss an opportunity to let us all know. Until you have walked in another's shoes, don't assume that what you are doing is possible for others as well.

Here4her Jul 2012
When mom was in rehab several years ago after stent in heart. My daughter brought a large bulletin board in and put pic of kids, papers they colored, etc.
She could mail to me to be put up. She doesn't live in our town. I was there every day and she did not have memory loss. But it's an idea.

IsntEasy Jul 2012
Digital picture frame is a great idea. She might also enjoy getting regular cards from you, grandkids, anyone who's willing to send one. The staff would surely set them out in her room and they'd be a constant, physical sign that people are thinking of her. Try not to focus too much on what she says. As someone pointed out, she's living in the moment. In moments when she feels lonely or unhappy, she may say that she always feels that way because, sadly, she has no way of 'storing' the happy times.

LDcaregiver1 Jul 2012
Hi All: Thanks for your responses.
I guess this is an issue more for me than anyone else and I need to reassure her that she is loved and thought about. Once I change the subject, she is fine. I think these things just pop into her head at the moment and she confides in me and I feel her hurt.

I like the whiteboard, but again, I don't think it will get used. I'm not totally sure why my brother and his wife will not use the journal except that he mentioned that it will prove she is forgetting. I will, however, have a talk again about the journal. I really like the idea that it is a "comfort" journal or a "good memory" journal, similar to looking at a photo album to relive memories. They can write down happy messages of love and caring instead of "signing in".

One other thing that I did get her that she loves is a digital picture frame. We loaded pictures of our family members into the frames and put their names on the photos so that she would remember who everyone is. She was amazed that we could get the photos onto the frame and that they would rotate and change. To her it's like seeing the photos for the first time each time she views it.

Yes, dementia is a horrible disease. I've heard it referred to as "the long goodbye". And, that is what it is. We lose pieces of our loved one day by day. However, I take solace in the fact that she is basically happy, well taken care of in assisted living, comfortable and not suffering through a long painful death from cancer or another disease. She may not be the mother I had in my youth, but she is still my mom and often there is a "spark" of her old self that comes through. I have learned to relish the good days!

Thanks again for all of your comments and advice!

seetao Jul 2012
Dementia, of any kind, is such a horrible disease. Observing and supporting my sister has shown me people with this disease are often only happy/content RIGHT NOW because they are simply incapable of creating their own happiness. They complain because they have forgotten there are other ways to handle things. It's not a lack of appreciation, but an inability to process things properly. You are doing a great job by keeping in touch with your mom and your brother. You are taking the appropriate responsibility of making sure she is well-cared-for, but you cannot also be responsible for the impossibly task of making sure she is happy every moment of her life. My advice is to keep doing what you are doing, call with regularity, visit when you can or when your gut tells you to show up unexpectedly, and live your own life. Your mom gave you life so you could live it well and be happy. That is the best way to honor our parents, in my opinion. Take care.

karenp Jul 2012
My mother is the same way. She lives at home by herself though. I see her 3 days a week, for about 6 hours each day. I have two caregivers who come over for the other 4 days of the week for 5 hours each day. My mother still complains that she is lonely and by herself a lot of the time. If I were to spend 23 hours of the day with her, she would complain that I didn't spend all day with her. My wonderful father passed away in 2005 and I think that is the real source of the loneliness. I think that dementia patients do not like to be alone at all and (not purposefully) blow the time they do spend alone out of proportion. If I were to tell my mother she never spends even half a day alone ever, she wouldn't believe me or would say that half a day alone is too much. It's very sad but you can only do your best in life. Unless someone is with my mom, and probably yours too, 24/7, she will not be satisfied. I also think that the book is a great idea! Perhaps you could tell your family that the book is to comfort mom while they are not there (so she can look at their loving, supportive words when she is alone), and not a "check in" book. Good luck!!

jeannegibbs Jul 2012
Mom has dementia. She forgets. That's what they do.

Personally, I kind of like the idea of a guest journal. Not to "prove" to Mom that she forgets things, but as a way of assuring her she is thought about. Or perhaps a White Board that guests could write a happy message on. What is your brother's objection?

I wonder if it would help to just focus on the present here-and-now. She says you never call ... you say "I'm glad I called now" and procede with the conversation. Don't get sidetracked with who did or didn't visit when. Just visit!

I don't think that you are going to convince her that she is forgetting something as important as a visit. WIth luck and skill, you can convince her that you love her very much and will be calling again tomorrow.

And, by the way, she forgets things because of problems within her brain. But if she wants to blame it on the "sameness" of each day, what's the harm?

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