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.
Your mom needs better meds. Get her to a geriatric doctor.
Pronto!
That won't work because it is her home, her friends, her space.
So, do cut back, keep checking in and visit with the caregivers more.
Looking way back, was it hard for you to leave a child at school when they forgot about you and went off with their friends, happily? Or, was it hard for your mom to leave you with a babysitter when you were little?
Enjoy the time as much as possible, take care of yourself, try not to suffer guilt.
Thanks for asking your question. It made me think.
Mom's deterioration has been escalating over the last three months. If she lives much longer her dementia is going to force her into mental care, but more than likely she will need a nursing home if she becomes any weaker. No one should have to go through becoming a vegetable and losing all their dignity like this.
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).
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
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
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
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..
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.