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.
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 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.
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.
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.
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.
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.
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.
Even tho your mom has battled anorexia her entire life, remember that so many ALZ patients at that advanced age will lose all desire to eat or drink, it is often times part of their transition into death. it is not painful for them to stop or restrict their eating and drinking. Research shows that when they do stop eating and drinking, their bodies will release endorphins which actually make them feel better physically. At her age and her ALZ, she truly isn't being 'vague', she probably honestly can't describe how she feels. My 90 yr old father fell on 31 March and shattered his right hip so badly that it could not be surgically fixed. 12 hours later he forgot he broke his hip, he thought he was moved to the hospital because he had an asthma attack. He said he was not in pain, he did not feel pain like others would due to the ALZ. Not ALL patients, but so many just don't feel pain, nature's way of protecting them, I guess. He stayed in good spirits, talking, just enjoying the attention of the nurses, but didn't even move around like someone who had a shattered hip only hours before. Do speak to Hospice and they will come around and give your momma an evaluation; your mom's doctor can request Hospice come in for you to evaluate and if your momma is eligible. This could solve a lot of the 'how often to visit' worries you may have as well.
She had the strangest expression on her face and wanted to go home as soon as we had eaten. I really believe she is happiest in her snug little room at the AL with all of her creature comforts right to hand. I have also noticed that she doesn't really enjoy long-ish outings (2-3 hours). So, I think . The best for now seems to be a short ride with lunch or ice cream.
How often? I now go every other day when we are in PA, which is half the time. And I have no guilty conscience when I don't go because at the end of the day, she doesn't know whether I was there or not. So, a win-win really..
definitely stay away at mealtime...consider less frequent visits
do come when there is some sort of "event", you might enjoy too..
my mother loved to have her hair fixed or nails done(if you do these things)
if I were in your mom's city, I would enjoy being that contact person who visited and kept track of things...good luck
Let the guilt go. It is what is called false guilt - not due to you doing anything wrong, but to you fearing you are not living up to the expectations of others. You are there for your mother when needed. Figure out what makes sense to you with regards to visiting and keeping contact with staff. Those who have not walked in your shoes need not make negative comments. Take care
I've found that the place where a friend with dementia lives there are wonderful people that enjoy a few minutes of chatting. The elderly are so often overlooked and ignored that just being
Just being seen and acknowledged as a human being can lift an older person's mood. Those kind of interactions also don't have have any emotional baggage either. I found that sometimes just being with the older ladies and having tea after a rough visit was a wonderful lift to my spirits (most of them did NOT have dementia, and I can't tell you how delightful it was to be talking to a 99 year old who was sharp as a tack, with a sense of humor).