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AmyGrace Asked June 2015

How often to visit when Mom doesn't care?

For the past 20 years I have visited Mom every week. She used to enjoy visits and we would have lunch and talk. As her dementia got worse, the visits became unbearable with her negativity and being difficult. Now, at 100, she is in AL 40 miles away and seems to have settled in and made friends. For her, I think this is about as happy and content as she has ever been for the past 30 years because she lives minute to minute. (That's not to say that when we talk on the phone - 2 minute conversation, if that, if she answers at all, all she does is complain, which is just her and always has been.)
She is totally a creature of habit and routine now. Our visits seem to disturb her more than comfort her. We have to just "drop in" because she doesn't remember if we tell her we are coming. If we go to have lunch with her, it means she can't sit at "her" table with her friends and makes a huge fuss. She doesn't want to go "out" anywhere and gets uncontrolled loss of bowels from the upset of it. She has a new simple life, and we simply don't fit into the routine she is comfortable with. The last visit from my sister she raised a fuss about eating at a different table, pooed her pants and sat in it at the table. If we just go for a visit, we sit and look at each other while she asks the same question every five minutes and there is no other conversation and talking to her about anything, she doesn't follow it. She lies down, gets up, complains about everything and we can tell she wants us to go. Our visits are down to about 30 minutes because its so uncomfortable for both of us.
So, do I continue to make an 80 mile round trip to spend 1/2 hour when she doesn't want me there after five minutes and won't remember it a few hours later or do I cut back. I bring her food, snacks, etc and she doesn't even know or care where they came from, or notice they are there except when she eats them. I understand her dementia is taking her away. I just feel guilty when I don't go, but I have health problems (more than she does) and it takes me a long time to get things done at home so I'm beginning to dread taking 1/2 day for 1/2 hour that neither of us needs, wants or enjoys. I check on her with the nurses. I'm going to take her to the doctor next week, and to the hearing aid place the following week.
I was thinking of cutting back regular visits to every two weeks, I'll bring her snacks, etc and just stay 1/2 hour? I just don't know what to do.

BarbBrooklyn Jun 2015
Amy, I'm going to share what works for me; I don't like visiting mom at theNH, she and I never really got on and now she has tremendous difficulty speaking, at least to me. (It's very hard when the staff and the rest of the family say to me "oh, mom had no trouble talking when I was there". I don't know if this is actually true or not, but it sometimes makes me feel completely useless. So I trim her facial hair, do her nails and massage her neck. One hour visits is about all she can take and she tells me to go home. I'm 75 miles away each way and given that I live in NYC, it ends up being a two hour drive each way. So what I've done is found things to do in the area where the NH is that I enjoy. Sometimes I get a pedicure; sometimes I spend an hour and the very upscale Goodwill store (I find toys for my grandson and clothes for me). Sometimes I do some grocery shopping. I try to make it an outing that is in some way fulfilling for me.

calicokat Jun 2015
It sounds like it wouldn't be a bad idea to transition your visits to every other week, and maybe after awhile, just once a month. Your brain knows that mom is slipping away and losing more of herself to the dementia -- your heart is just taking awhile to catch up (that's why there's guilt).

Since your mom won't notice the change in all likelihood, I would encourage you to try what you are thinking for a few months and see. If it doesn't work out, you can always get back to visiting once a week. Good luck, I think you will be happy with this new arrangement, once you get it established!

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vstefans Jun 2015
I can identify. I more or less became my moms laundry lady and kept the candy bowl full. I went a lot more often but it was most often short and purposeful. I was blessed that mom enjoyed some variety to her routine, and she really enjoyed grandkid visits. I could stay longer without getting picked at if there was an event like a music or Veterans Day presentation or something.

You are tuning in to Moms needs and not just yours and that's a good thing. Not selfish at all. Go briefly and often enough - ideally a little irregularly - so it is clear you are involved and keeping an eye on her care.

ADCaregivers Jun 2015
I agree that visiting @ meal time should be avoided. IMO, there are two other important issues here. One is guilt about visiting/not visiting your mother. I believe our society has too many beliefs about how we are supposed to treat our aging parents. These beliefs seem to skip over the fact that many parents are extremely difficult to deal with as they age or as dementia sets.
Clearly, AmyGrace is doing what she "should" with regards to visiting her mother. But these visits are resulting in pain and frustration for her. Thus I agree with other writers that limiting her visits might be a good idea for her own well-being.
BUT, the mother is in a home. Therefore, I believe in the importance of regular visits to ensure that her mother is being cared for. Staff know whose family visits and whose don't. If I were AmyGrace, I would find a reliable and reputable person to visit her mother every week or ten days. It could be a social worker, a retired nurse or teacher, it just needs to be someone reliable who is also observant. This person should prepare a short written report or email to AmyGrace about what she observed that day. This person could also bring snacks or whatever the mother likes. With a smart phone, she could take a photo of AmyGrace's mother each visit. This would be proof that she visited and the staff would be aware that someone is watching AmyGrace's mother.
Of course, this person would need to be paid a reasonable rate. A local church or social services agency could help you find such a person.
Perhaps some of you will think that this option is wacky. But I believe it protects both AmyGrace from her mother's behavior and protects her mother from a potential lack of care in the nursing home.
I had a mother that was impossible to please. Nothing my father or I did ever pleased her. So we paid my aunt, who my mother adored, to take her to all types of appointments. It reduced the pain and stress for my father, who cared for her until she died.
In closing, guilt is not useful as a basis for behavior because the behavior is not heartfelt or authentic, but just guilt driven. All the best to you AmyGrace

MaggieMarshall Jun 2015
Love your plan...bring her snacks...every other week...for a half hour. Be sure you're appreciating those staff who give extra attention to mom. Let them know what you're doing and ask them to let you know if they think your switcheroo is noticed and causing a problem.

AmyGrace Jun 2015
Thanks everyone. It does sound like I'm doing the right thing. I wish she was closer. We waited five months for AL nearby to have a room and finally had no choice but to move Mom to one farther away. Wouldn't you know, a week later the other one called and finally had a room. Isn't that just the way it happens sometimes! Anyway, I'll time my visits for after lunch and just drop in. Although I'd like to eat with her, she can't understand why she can't sit at the same table so its better to avoid the issue. It better for me too because it bothers me to watch her barely touch her food and hide it in her purse, and again, it does no good to say anything. They tell me she has a friend and they are inseparable and her friend looks after her. The AL staff thinks they are "cute". (The same thing happened in IL - Mom depended on a friend to take her to lunch and dinner, etc) I'm glad she does as we found she doesn't want her us to be involved and resents us making suggestions, but doesn't resent her friend. I try to keep in touch with the nurses and yes, my sister and I have POA's.

Salisbury Jun 2015
Wow, can I identify.

My mom still knows who I am and is happy to see me (thanks to the excellent drugs she takes!!!).

But she also lives in the minute, which has a downside and an upside. On the downside, conversation is agonizing.

But hang on, here comes the upside: when I walk toward my mom or knock on her door, she is happy to see me,and she doesn't know if I am coming from Louisiana or the ladies room. She has no idea I when she last saw me. This has given me NEW FREEDOM. I can stay away for weeks (when I drive to NC to visit Grandchildren.) and know that she will be happy to see me when I get back. when in PA, I visit every day. when not, I do't worry about it.

So, your mom has, in a sense, given you a free pass. Visit when it suits you.

OldBob1936 Jun 2015
I'd suggest once a month visits. I would not put a time limit on them as if satisfying a quota. Half hour, five minutes, whatever. If she won't remember anyway, you're the one stressing about it, not her, and that is natural.

This is not an easy situation for you. Take care of yourself.

Grace + Peace,

Bob

bookluvr Jun 2015
And avoid mealtime. Based on your sister's last visit, you can tell how important it is for her to maintain her daily schedule. Any deviations upset her. I like the suggestion about visiting when there's an event. Is it possible to join with her in her activities? And if it looks like the 30 minutes is too long, then cut the visit short. Just go with the flow of your mother's mood.

Chicago1954 Jun 2015
"she doesn't want me there" That is the key. I wouldn't go. I have told relatives that for years about our mother. "We went to visit her for a week and she doesn't cook or clean for us." LOL I tell them 'Don't go."

Would it be possible for anyone to drop in and check on her, when they are in the area? Do you have POA, so you can telephone the nurse and get updates?

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