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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?

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What about a senior day care sort of place a couple days a week? She would get more socializing. Does she get taken out to the grocery store or spend time outside? Being closed up inside a house, no matter how much one loves their home, can be very lonely. Fresh air and looking into the distance at a park or someplace is great for mood altering. Even taking a car ride is good.
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My grandmother was a very socially active woman and fortunately never suffered from any level of dementia but she often mentioned feeling lonely, I don't think she ever got over the loss of her dearly loved husband. Being surrounded by other people does not necessarily cancel out the deep loneliness that comes from the loss of a spouse, siblings, friends and other close relationships, at best it distracts temporarily. I think all you can do is commiserate, maybe occasionally ask who she is missing and take a walk down memory lane with her.
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Could just be something she says without a big meaning behind it. With no short term memory, she's not recalling the recent and very often visits she is getting. So, you know the facts so do your best to let this comment go in one ear and out the other. Come up with a response that you can use over and over like "Living along can be lonely sometimes".
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I have to ask...
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.
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Way2tired Apr 2023
I was thinking the same thing. Sounds like she can't be alone.
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Much of the stuff our elders with some dementia say is more or less rote habitual speech.
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.
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Wolfpack Apr 2023
You are a wise and dignified soul. Thanks for helping all of us!!
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With a broken brain she most likely does not know exactly what lonely is, she is like a Polly parrot.

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.
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If mom said she was living on the sun and it was too hot, she needed to go home, would you internalize such a thing and allow it to torture you? Or would you chalk it off to brain disease, knowing she's now existing in another reality which you have NO control over to change or to "fix"? My mother insisted her girls were moving her to a new hotel every night from her suite in memory care. And taking her to parties every night at different entertainment places. She was tired of all the hubbub and just wanted to rest. What was I supposed to do about it? Nothing. Just listen, agree, nod my head, change the subject, give her a snack or an extra Ativan, and wish her a good evening.

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!
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Does she have an adult daycare center in her city or near? If so, you can have someone take her there up to 5 days a week, and they can stay up to 8 hours per day. They serve breakfast, a snack and lunch and always have great activities to keep the folks busy. The people that work there are great and take great care of their clientele. And if money is an issue they have programs available to help with that as well.
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.
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Your post says “She wants to be in her home so we have arranged that”. Virtually no-one ever ‘wants’ to move away from their home, but many do find that they enjoy the social side of being in a facility. The ‘loneliness’ is a side effect of staying ‘at home’, and it may not have been her best option in spite of what she said.

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.
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She may be on a loop, which means that she comes back to that again and again. Next week or month it might be something else.

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.
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"How do I let it go when she says she is lonely all the time?"

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.
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AliOJ58 Apr 2023
exactly - I’m going to try this!!
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If shes lonely a facility is the perfect place for her. Social interaction would be beneficial for her. Start touring places for her to move to .
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With dementia, she is going to say all kinds of things. I will spend all day with my mom and then take her back to her memory care apartment and she will say, "I wanted you to spend some time with me". I just spent the entire day with her, but she can't remember it. It sounds cruel, but you will learn to let what she says go in one ear and out the other. You can't take it personally or it will suck the life right out of you. I will say that if your mom was in a facility, there are other folks there that she can dine with or sit as a group and watch a tv show. They have card games and bingo and puzzles set up on tables, etc. The facility my mom was in last would bring in a pastor on sundays to have church service. The facility offered more than I could ever give her at home being one person who works full time with a life and a house of my own to manage. People say they want to be at home because they don't know what is out there and they are scared. I don't have any experience with this, but there are also daycares for the elderly. They get to socialize and do crafts and listen to music. That might be a good option for your mom as well.
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AliOJ58 Apr 2023
She has all the puzzles and games and supports Dad needs - she’s doing the best she can to honor his wishes. The challenge is how it make us feel when they say “I’m so only” despite all these efforts.
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I’ll let you know when I figure it out! - my mom and I have this convo every day. She misses me. She also now talks more about missing my Dad.
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.
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Never, ever thought I would move my mom to memory care! She loves it, is happier and smiling every day. Haven't had one bad or sad or mad moment on the phone or at a visit. She was actually in an independent living facility and got covid. No physical issues but it did a number on her mind. She started "escaping". Moved her to my home that she has always loved and she "hated" it and I was keeping her "prisoner" so she started walking away several times a day. She was either crying or mad as a hornet and wouldn't even look at me. So my brother and sister said, "enough". After a month of mourning because I wasn't seeing her everyday, I realize it was the best for everyone. I see her once a month and talk to her twice a week, call the facility every other day to make sure she is happy and it works for us and her. Make the decision to do what is best for her and then move on. There is no perfect solution in the world of alzheimers.
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RedVanAnnie Apr 2023
What a great story! It's wonderful that you have found such a good situation for your mother.
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We used a huge wall calendar for my mom when she was in rehab - always forgetting all the people who showed up to visit!! We’d write our names on the days we came and when she’d start with “where have you been?” we just had to point to the calendar and she’d stop. We also used a write on/wipe off sheet (they make big rolls of this stuff that easily stick on the wall) and we wrote every visitors name on it … here’s your visiting team! We may have had to remind her to look at them but it worked overall!
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Way2tired Apr 2023
I did that too when my Mom was in AL , I wrote my name on the calendar each day I visited .
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I am also going through this with my mom. She has recently moved to Memory Care and calls often to ask to come live with me. It makes me feel so guilty ...Hopefully she will settle in soon, but it sounds like many others are going through similar situations.
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Jennycap Apr 2023
This forum and has been so helpful. You really realize we are all going through the same thing!!! My mom has been in AL for 2 years and I still feel guilt. I work all week - I need my Satudays/Sundays to do stuff!!
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Along with the suggestions, you will have to accept this as a symptom of the disease. It helps to settle the guilt..
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My experience has been the older you get you find out who your real friends are. I have no family and We have no friends! my wife’s niece. will visit once a year. So the only people she sees other than me is her care team 3 different people visit once a week. I can tell she is very happy for the interaction
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whenlovelistens Apr 2023
I agree, friends and family stopped coming to see Mom when she had to go into assisted living. They say, "she won't remember our visit anyway". I go see her every day knowing that each time I shut the door, she has already forgotten me. Oh, but how her face lights up when I walk in the next day!
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My husband's aunt, 94, says the same thing ALL the time and even cries she is so upset. She has hired caregivers whom she loves plus family regularly visiting each week. She remembers absolutely nothing. The only thing you can do is remind her who visited when you see her. We now buy flowers every week & she seems to connect that with visitors.
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whenlovelistens Apr 2023
We keep a small notebook beside Moms chair and journal in it about the day. She reads it hours and days later and knows she is loved even though she can't recall the visit itself. Photos just seem to make her too sad, so we don't make her look at them. But, she loves talking about her childhood because those memories are crystal clear and we love listening to her talk about them.
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When my mom says “she wants to go home”, she’s talking about her childhood home. She often talks about other places she’s lived, but this is where she wants to go almost like 3 times a week. She says she sees her mom, sister and my uncle often and then “they just leave her here” (with me). Are you sure of what home she’s talking about. You might get her home and then she could still say the same thing. I’ve read people with dementia often want to go back to their childhood home.
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Lizhappens Apr 2023
Yes. My misses would describe her home and I was told that was her childhood home. You just got a listen and love them. I like the idea of pictures, letters are good too, From the past with memories. It’s such a hard way to go.
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Maybe use a polaroid to take a picture of your mom with people and then put them on a bulletin board so she can see them.
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Think about what “lonely” means. People are often lonely in a crowd. Lonely is when you don’t feel anyone “inside”, anyone who knows and understands what you are going through. With short term memory loss it is almost impossible to hold on to that person who knows, loves and understands you. May I suggest then, the Miracle of music from her youth? It does wonders for mood.
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Assisted Living will offer her companionship around the clock.
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Jennycap Apr 2023
Loneliness was our #1 problem -Assisted Living was our only option. We sold her condo and used those funds.. She still complains
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Put her in an AL where she’ll be surrounded by people her own age.
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Maybe she's lonely for her sweetheart or how life used to be.. surrounded by familiar faces and loved ones. My mother has been lonely since my dad died. I live with her but it's not the same.
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I am in AL. A friend who is quite social, well-liked, but with memory problems frequently complains there is nothing to do or happening. This is not really connected to what she has done, or will do. It is not being able to internalize the experiences any more. That being said, she needs frequent reminders of plans and activities. I don't think she gets these. I have started to do it, although it feels intrusive.
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Ilovemy2cats: As your mother unfortunately suffers from dementia, she may require facility living. In a facility, she may not be lonely IF she has the capacity to socialize. Perhaps you can garner information on the disease by reading the book, 'The 36 Hour Day.'
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"lonely" may not mean lonley. Sometimes you have to decipher what they are really trying to say because what they say isn't what they mean, they just can't find the correct words to use to verbalize their thoughts or feelings. Mom kept repeating there were too many big "buttons" and finally we figured out she meant the "blankets" on her. When we removed a few blankets (she had been complaining that she was cold) she voiced relief so we knew we found what was troubling her so much. She may be lonely, or maybe just unhappy with her memory loss thinking no one understands her problems, or depressed because she knows things aren't right, but doesn't know what the problem is, isolated in her thoughts perhaps or Missing someone special?
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don't be under the allusion that assisted living facilities provide companionship or socialization. No amount of people you bring to sit with her will change how she is feeling. Find out what she is feeling and go from there. "lonely" is the word she is using but true meaning is hidden. Lots of hugs and try to let her know you understand she is sad. Perhaps she is going through depression. More sunshine, exersice, and vitamin b6, b12, build up the serotonin. Make sure she is getting good nights sleep. Like an infant does not have perception of time, but they are happy and feel good when they know they are "safe and loved".
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Way2tired Apr 2023
My mother did better in AL than when she was home alone . Some do engage and socialize , but they are still lonely for their spouse and for other reasons that won’t change no matter where they live . My FIL in AL refuses to socialize . He still needs the care the staff gives him . When I worked in AL and when I visit LO , there are always some residents that you see out in the common areas sitting with friends or at activities . And yes it seems to be the some of the same residents you see all the time in the common areas. Some are more social , others are more private .
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