She has caregivers in 3-4 times a day, I see her 4-5 times a week and a sibling comes from out of town twice a week. This is the one thing she says that tortures me. She wants to be in her home so we have arranged that. I imagine since she has no short term memory that that is the reason because she doesn’t remember anyone coming in or talking to anyone. How do I let it go when she says she is lonely all the time?
But once you said that I thought of my dad. He and my uncle and I would go fishing . We would all be hauling in the bluegills one after another.
Every time my uncle or I caught one, he said, I NEVER can catch one. I said da, you caught one a minute ago. He said, no, I would remember that.
Kind of sad and humorous at same time.
But kind of similar in a sense. She forgets that she had people with her not that long ago.
Maybe a visitor log for reference?
I suspect “loneliness” may be code for “depressed”. Maybe there are medications that can help?
As for the guilt - you are doing all you can. This is a symptom of an awful diseased brain. Maybe we need to think about how grateful and concerned the pre-dementia person would be and know we’re doing all we can.
You immediately translate her "I'm so lonely" to "I forgot that I saw so and so 20 minutes/an hour ago/yesterday" because that is exactly what happened.
That's how you let it go.
You’ve done all you could. You may be categorizing it as a plea for help or a criticism of you, but start thinking of it as a symptom of her diseased brain.
We don’t have to take everything they say so seriously. She may not even really understand the concept of “lonely” now.
i had a friend who had dementia and she was very well cared for by family and friends. No expense was spared for her care. All day long she’d say “help, help!” She was very sick but didn’t need help in the way we think of it. She was helped all day and night! In her mind the word took on a significance and meaning and was probably the only thing she could think to say.
One option you could try would be to arrange respite care for her for a couple of weeks, so that she would spend some time with other people more frequently. The ‘respite’ is for you, not her! You could even try taking her to lunch at a nice AL or MC, as they often allow prospects to visit. She might find it quite interesting. At least it’s an alternative to being ‘tortured’ by the phrase that has gone on repeat, repeat, repeat. You don’t need to say that you are planning to move her, just (truthfully) that it’s something arranged for older people that she might enjoy as an outing.
The one in my city even has a spa like room where they will bathe and do the persons hair.
It would be great opportunity for your mom to be around other people and have some fun. Most people leave quite tired from all the activity. They're worth every penny.
We all lose when dementia comes into play. But if you are going to buy into her demented delusions, you may wind up suffering more than she is in the end. You're doing everything humanly possible for the woman, so let it all go and allow God to help you accept mom's situation now. She may perceive herself lonely 2 min after a visitor leaves, which doesn't make it a reality. Know that you are a wonderful child to her, and doing your level best in a difficult situation.
I suggest you read this 33 of booklet online about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Good luck!
I do not understand why it tortures you, it is just her repetitive verbiage, it is what she is stuck on.
Has MC been discussed she will have 24/7 care. Soon her home will mean nothing to her, it will be gone like most everything else.
Perhaps a little therapy will help you better deal with the reality of the situation, as this will not get better, only worse.
Take care of you.
In fact this is often true of ALL of us, whether we suffer from any brain disability or not. Notice who comes to work always sighing and down, and who shows up always chipper and perky. You will eventually conclude that it really has little to do with their real lives.
We develop habits. It is often little other than that.
I don't know if it is true of your Mom or not, but it is said that we die much as we lived. Our last years are either ones of depression, resignation, deep sighs and looking at the downside (and there's plenty of it to see, I assure you at age 80)
OR
we are more or less content, enjoying those things we enjoy while acknowledging that we do so with a few more aches and pains.
I think if you are too "tortured" by this (using your word) you may want to seek a few hours of counseling with a licensed social worker in private counseling practice. They are great at life transitions work.
We cannot change people, but we can change our reactions to them.
You didn't cause any of this. You can't fix it.
And honestly you are already doing more than any three people put together. Doing twice what you are doing is very unlikely to change a thing.
Not everything in life can be made all happy happy, so just take her hand and say "I am so sorry. I wish you felt a bit better". Listen to her! Don't try to change things for her. It is her reality and she should be given the dignity of it.
Throughout our lives we choose whether to look more at the light side or the dark. There's plenty of EACH to see.
I surely do wish you good luck.
Remember, you don't want to mirror what your Mom is doing. You have a choice which side to concentrate your energies on.
Who is with her when the caregivers are not there?
If they come and go 3 to 4 times a day how long are they there when they come?
If they are there an hour that is a total of 4 maybe 5 hours out of 24. That is a long time to be alone if you have dementia. When your brain is not working properly time is a fuzzy thing. She may not even remember that someone was there so she feels like she has been alone.
I think maybe the time has come where someone is there with her 24/7 or she may be safer in Memory Care where she will have people with her 24/7 as well as structured activities.