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.
You don't need to put it on a schedule. Go when you feel up to it. You might skip two weeks, then see her for two weeks, whatever works for you. See how she does with it, and how you do with it. It's different when you go because you want to, not out of guilt.
I always take something to make her smile, whether it's a new cat photo for her room, a new shiny necklace or a t-shirt with a picture on it. She's so surprised. I usually take a picture or two to hang in her room, though, I doubt she ever looks at them. But, the staff does and I want them to know who her family is.
Plus, I think that going at least once per month is good so you keep an eye on her mental and physical state. Sometimes my accessment of how she's doing is different from the staff and I have to talk it over and discuss with the doctor.
I wouldn't feel bad if I didn't visit all the time. Having a person with dementia is a huge responsibility and we all handle it in our way.
Thanks everyone for your advice. I will visit once in a while to bring food, take her to appointments. I just hope she doesn't become incapacitated and we have to move her again. I don't want to see her bedridden and a vegetable. By the way she looks though, I have the feeling she will not be with us much longer, which at this point would be a blessing for her to feel no physical or mental anguish.
But the suggestion of keeping a presence at the NH is a good one. I have someone who comes out 1-2x a week and then I try to stop by once every week or two. Often they need an advocate to make sure things are going well. Like the commenter said, the NH knows who gets visitors and who doesn't. That can be important.
But your mom is not directly benefiting from your visits - it gets in her way of her reassuring routines and of her connections with the friends she has made. It agitates her and makes things more difficult.
So, it makes sense to reduce your visits. Maybe only visit for a short time much less frequently - and not at mealtime. Or not go at all.
Or... as ADCaregivers said - you can have another person visit to make sure things are going well and make sure the staff is aware that she is being cared for. I agree that the caregiving stays at a better level if the facility and staff knows she has some visitor(s) that pay attention to the level of care.
But it does not have to be you - especially since it distresses your mom and the emotional and physical cost to you and your health is very high.
She is being cared for already. You need to make sure you are being cared for as well.
I feel your pain because I am constantly worrying over that problem myself.
I think we get caught up in what OTHER people might expect us to do based on how they think it ought to be handled. Like what will the nurses think if I'm not there, or what will so-an-so say if I only visit every 6 weeks?
The answer is: who cares. You know you and your mom best. Only you can come up with what works. I am not a person who can sit silently in a room with someone who doesn't want me there, or with someone who is disrupted by me.
My mother was much the same as she was transitioning into a deeper stage of dementia. Around that time she was moved off the skilled nursing unit to the secure memory care unit. It's very quiet there and mom likes it that way. She just got moved into a single room but I haven't been to see her yet. People who don't understand will think ill of me, but so be it. Lots of work hours and lots of kids' activities and life obligations to take care of eats up my free time.
Mom was always happy sitting in her house, in the dark, all alone. Even before dementia. They removed her goals of participating in activities recently. She would make such a stink when they tried to involve her.
Now that I am official court appointed guardian, I will visit her monthly and fill out the wellbeing report to the court. Problem solved.
I am digressing...anyhow, last months I was there for 2 hours and when I got ready to leave she demanded to know why I didn't wake her up so we could visit! I can't talk to her anymore because everything is a constant repetition. This week she asked me when I was coming and I had been there a week before. (It takes most of the day to make the trip, take care of her business and visit.)
All I can say is do what you feel comfortable with and I wish you and all the other caregivers well.
I now visit Mom at least twice a week. I take her cookies, candy, treats. We have coffee and cookies during the visit and generally work on a jigsaw puzzle to keep her mind engaged. I bring her fresh flowers once a week. I have taken my laptop to show her pictures of family reunions from years gone by. Sometimes I give her facials and a manicure or shampoo her hair and give her a scalp massage. Anything to make her feel special. I try to bring meals that I know she will enjoy and we share them with pretty tableware, napkins, etc.
Just remember what you Mother's likes are, and try to provide those things. Keep in mind that Dementia changes peoples personalities. When Mom gets cranky, I just laugh it off and joke about it. A lot of times she will laugh in return.
Good luck and best wishes. There are thousands of people sharing what you are going through. You are by no means alone.
This is not an easy situation for you. Take care of yourself.
Grace + Peace,
Bob
But enough already. You need to take care of yourself and an 80 mile round trip is not good for you every week. Rotate with your sister. You go whe you need to take her for an appointment once a month and she will go, again for a reason or an event once each month and see how that works. Feel better. You have done more than everything you could for her.
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