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She’s been there since last spring when she fell and had a brain injury. She already had early stage dementia which has progressed some. She’s alone most of the time, except for the caregivers in her assisted living facility. She’s in the memory unit. She’s lucid some of the time and knows enough to know that she wants to go home and she misses her cat (who lives with me). I live out of state and travel to see her once a month. My brother and family live near her but rarely visit. Most of them aren’t vaccinated and aren’t allowed to visit. I don’t think they would anyway. My mother has lost down to 95 pounds and stays in bed all day (her choice). This breaks my heart. She doesn’t want to move out of state where I am and I don’t think she’s well enough to move now anyway. The staff where she is takes care of her physical needs but don’t engage her in anything. I think they’ve tried. She’s a loner and thinks the other residents are crazy. So she’s given up and is wasting away. I talk to her everyday on an Echo Show so I can see her. My brother will not budge on seeing her more than once a week for about 45 minutes. She has no other visitors unless I’m in town. Have any of you had a loved one who just quit trying because they were unhappy and wanted to live at home but were unable to care for themselves? We couldn’t afford in home care. I’m watching her slowly die and I’m desperate to help her. She’s on hospice but could live for months. Is there anything I can do to make the time she has left better?

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You say, " She doesn’t want to move out of state where I am and I don’t think she’s well enough to move now anyway." You have several suggestions to move your mother to your home, yet you say she does not want to move. She wants to live in her own home, which is not possible. She longs for a different place in time when she wasn't sick but healthy & vibrant; THIS is the real problem which nobody can fix. You also say it's her choice to stay in bed all day & not socialize with the other residents which would likely improve her mood. She's already on hospice which means she should be getting several visits per week from the social worker, the nurse, the CNA, the chaplain, etc. I recommend you contact the hospice chaplain AND the social worker to see if they can suggest ideas for you. If she is a woman of faith, perhaps the chaplain can make more frequent visits, if she's agreeable.

To me, it doesn't sound like your mother is looking for 'answers' to her situation. It is you who seek these answers which really don't exist, sadly. It sounds like your mom has given up and in such a situation, I don't know what WOULD help her? You can send her cards & letters; small gifts as well. If she has a favorite meal, perhaps you can ask your brother to bring it to her when he visits. I honestly think a 45 min visit once a week is a good thing that he does; any more than that is probably too hard for him. It takes a toll on a son or daughter to see a parent in this condition, I know, I have a 95 y/o mother living in Memory Care and that's all I'm able to manage myself. We all do what we are able TO do. If possible, can you make more frequent visits? I suppose that would be the best possible thing for both of you.

I'm really sorry you're going through this; it hurts and it's sad to witness a parent in such a level of decline. Sending you a hug and a prayer for acceptance of what is, and that God calls your mother home soon. That's my prayer for my mother, too. An end to the suffering and blessed peace.
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bianca12 Jan 2022
Empathetic response. Thank you. I am in a similar situation
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I feel for you, and can relate to your feelings of helplessness and sadness. Plus the pangs of guilt that we're not doing enough sometimes. It took me awhile to hear the advice from others, to be easy on yourself and continue to do the best you can. Our mothers no doubt were faced with similar times, when we were babies..they didn't know why we were crying, or how to comfort us. So they just did the best they could Right now I'm here with mom for my twice monthly visit. She is happy to see me and my dog. The happiness will fade when I leave. I will call, and write and send pictures in between visits. I wish I could fix her pain and depression, but I have accepted this is how it will be for her. Must learn to appreciate the warm moments that are still possible, and stay in touch as your schedule will allow.

I hope the hospice organization has been reaching out to you to offer guidance. I'm a hospice volunteer, but with Covid we are not allowed to see patients at this time. Hoping that will change again soon. But the hospice volunteers are good a finding a person's interests, and pursuing that...like I am a musician, so I get matched with folks who enjoy music. Or pets, or history or art.

My mom has taken to staying in bed now, no longer engaging with the other ladies for meals or activities. It !are me sad, but I am respecting this, and not pushing. I have found its important for her to be able to make her own decision...I think that, in a weird way, gives her a sense of control.
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The problem with memory decline is that one doesn't remember that someone was just there "cheering" you up. You go back to your default setting until the next distraction. Does the MC offer anything such as visits from therapy pets, music therapy, etc? These things are offered in my MIL's LTC unit and she does enjoy them when they come.

Wanting to "go home" is a common dementia behavior and the person is often referring to their childhood home, the one in their long-term memory.

Your brother is not obligated to be part of her entertainment committee. He's already doing it once a week and I think it's great that he participates to this level. As far as moving her closer to you, I would consider this solution but you must be realistic about her age, frailty, and expectation that more visits from you will make her "happy". I wish you much wisdom as you consider solutions and peace in your heart no matter what the outcome.
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NightHeron Jan 2022
Yes. When I read "my brother rarely visits," I was surprised to later read that he visits once a week. That's something, at least. Many don't do that.
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I am pretty much in the same situation myself. My mother is middle stage dementia and lucid, or seems to be, a lot of the time. She wants to go home desperately. The problem is for her she will not let people come into the house to help. We tried twice with Hospice and she kicked them out both times. It’s heart wrenching. I am not in good enough health to take care of her, fight her to comply. If she were go back home she would start smoking again, stop taking her meds, not allow anyone in to help. I cannot do it on my own . I don’t know what else to do. When Mom was released from the hospital, after suffering major delusions and hallucinations, she was transported to memory care. She was placed on hospice because she had lost a lot of weight. However after six months she was not declining and now she is on Home Care, or a nurse goes to memory care twice weekly to check on her. There have been a lot of answers here, many of them saying go get her and take her home. I don’t know if that’s really feasible. I don’t know what your situation is, such as do you work a full-time job? If so you may not be able to take care of Mom and work. Is she compliant ? If not it will make life very difficult. My sister that was living with my mother had a nervous break down trying to care for her, with dementia many times they will go days without sleeping. She expected my sister to be at her beck and call 24 seven no matter what time of day/night. I just bring these things up because I think that before you move her you need to look at the entire situation and see if it’s something that’s really realistic. Like I said I know it’s heartbreaking I go through that with my mother in memory care.
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I recommend discussing hospice with her. Tell her that it would mean more visits to help her, more one on one, clergy if she wishes to see them, a social worker if she wishes to speak with one. And yes, QUIT TRYING. This is a hard time of life; she, like many seniors including my Dad, is likely ready to go and her body just won't quit. My dad and I discussed this. I was a nurse and patients often discussed with me that they were exhausted with trying to make family think they are "OK" with all this and exhausted with having to go through it and having their feelings about it negated. "Ohhhh, you can't meeeeeaaaannnnn that. You can live to 100!". You can imagine how they want to hear that. It is hard for those of us younger to imagine a time when we are ready to go. I always knew it due to being a nurse. At 80 I know it profoundly. Don't try to make this nice because you can't. She has no friends; she is right that if she is lucid few others there are, and few enjoy that (My bro's ex does because he is a social creature who doesn't honestly CARE if they are lucid; he loves to visit anyone!).
So stop trying to pretend it's OK. Tell her you are sorry you aren't closer and can't visit. Send her a cat that is really a special cuddle toy, one that looks like hers. Send her pictures. Because on the contrary while they may cry looking at these things it is a comfort to them. A little scrap book of pictures of her kitty. Talk to her a lot about her kitty and show her the cat, reassure her. Ask if they have animal visitors at the facility. So many do.
I am so sorry. This is so hard and I know you want an "answer". There isn't one. We live too long and it is too hard in a lot of cases. And not everything can be fixed. It is the more difficult for you being so removed. You are right not to try to move her. Ask her if hospice would help. Ask her if there is anything you need to know about her wishes should she be close to end of life. TALK to her realistically about the real things left in her life.
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lealonnie1 Jan 2022
In her post, the OP says, " She’s on hospice but could live for months"
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p.s. I agree with Kelly below (if you can get her out of there, do. As you said you didn't feel she was up to being relocated, I didn't address this. However, it might be the best way to go.
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If it is possible to have a caregiver visit her, arrange this.
It is very difficult / challenging now with the Covid uprise and health care facility restrictions/requirements.

* I would recommend you contact a college in her area - contact department heads in: nursing, geriatrics, social work, counseling. A student may be able to gain some credit for visiting; even if not, the experience would be a plus for them on their resume.

* Find volunteers at your / a local church, neighbors.
* I am a massage therapist. We now have very strict 'touch' / massage restrictions which change all the time. If someone can get in there, a hand massage is very comforting - and doesn't need to be certified. In fact, it would likely be better for the person if they are not certified (to protect themselves legally).

IF THEY CANNOT VISIT
Arrange phone call(ers).
Ask people to write her a note and mail it (can she read?) - if not, a picture of something pretty: birds - flowers and sign their name "thinking of you"

* I wouldn't expect too much more from the staff. From my experience, they are very focused / busy on doing the foundational work that must be done, i.e., keeping your mom clean(ed up), hygiene/bathing needs; keeping the room clean / sanitized, delivering food trays. They are not social workers and their job focus is different than socialization (although a little attention: "how are you today Mrs. XXX" would be expected / appreciated.). Most are exhausted.

The reality is: There is no end to the support a person needs. They are miserable, loners who do not want to be alone, fearful, confused.
* If you can, try a radio or CD player (if someone there will help her with it).

* Personally, I would reframe your feelings about your brother and be grateful he'll visit once a week for 45 minutes. Some people cannot handle these situations 'well,' if at all. (I work with families.). That he is willing to stay there for 45 minutes is a plus and a blessing.

* Her reflections: a loner and 'everyone else' is ... crazy or disabled, but I am different." This is common response. It is a way to isolate.

Gena / Touch Matters
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Lealonnie1 makes the most sense. I have been caretaking my husband at home for 14 years and am arranging for a facility now. Although he will want to go home, he doesn't know that he is home now and constantly asks where are we. Sadly it is the nature of the beast. As someone posted elsewhere, "wanting to go home" may not even mean their former house. Our society is not set up to care for these situations. It's difficult and can be very sad. Read the posts from the majority of people here who are losing their minds caring for loved ones in their own homes. It's doesn't sound like a viable solution for your situation.
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My mother has a therapy baby doll that gives her a great deal of comfort. It is so realistic, soft, and comforting that everyone, even the aides want to hold it! I purchased it at Ashley-Drake.com. It's called, Kayla Comfort doll, and is specifically designed for dementia patients. She keeps my mother comforted 24/7. My mother also changes its diaper and clothes. There are also toy cats specifically designed for dementia patients. Good luck!
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First of all I’m so sorry . I know this emotional pain . My dad developed a sudden onset of severe mixed dementia a few months into Covid . He has been so severe that he wasn’t eligible for LTC or memory care . He has been in hospital for 18 months. We have been locked out numerous times with Covid and currently are . The care is very limited and worse due to Covid . He is wasting away, fell and broke his hip,developed pneumonia and sepsis and almost died 4 months ago . The hospital is shocked he survived . Just 100 pounds from 160 .he was bed bound for almost 4 months due to this . Can no longer stand. We have no access, no phone through hospital .Only my mom can go in now and he is angry with her for not taking him home . He has days he doesn’t want to leave bed even though he can now sit in a chair , doesn’t want to eat or talk to anyone . It’s nothing short of heartbreaking . As I say I know your pain,
I think at the end of the day our goal is to give him something to do even in bed to occupy his mind and bring him comfort . Here are things I’ve tried that have given joy for living in the moment , my dad is almost blind so they are for his needs :
Music , send in a player and someone in the facility can press play on the CD and walk away . Music has been our saving grace . Sometimes we have to be very careful what we play , it can be very emotional when your feeling down , or too happy when your not in the mood . he could pick from the cd’s and gives him a little moment of control in his life . We have different cd’s and playlist for different moods . 2) A stuffed dog that looks like his dog ( he knows it not real but gives comfort) Another big hit.
3) FaceTime call facilitated rarely by the hospital . We have friends who set up Alexa in Memory care facilities so they could more easily check on loved one visually ( hospitals don’t allow for us )
4) joke of the day , done through a call with my mom : a joke that would make him smile and finally a benefit for memory loss is I don’t always have to have a new joke :0) . Sometimes I started with I heard a joke today and wanted to share , tell me what you think of it .This way it wasn’t so awkward to introduce .
5)Textured Art work that he could feel and then to hang in his room ( by family( grandkids or bought ) 6)audio stories for player , or a book of short stories we would read to him . 7)we would work together on creating a food care box : We would talk about food he may be missing in the facility and want to have that he his craving . This turns into reminiscing about old recipes , dinners etc and then we would make a little care box filled with treats and send them in to facility or drop it off at the door ( kind of like receiving a parcel from his generation) . While he remembered he looked forward to it but he didn’t have to remember, as it was then a surprise when it arrived . 7)A very soft , soft blanket that he could sit and feel . There are Alzheimer options for different things to hold and keep your hands busy with . I find for him a soft blanket worker best . 8)A plant to care for ( his were fake ) :0) 9) the dr told us we could make recording of our voices telling a fond memory or story . You could start by saying it’s me ……. . I’m sending you this voice story . They would then play it for your loved one when they are lonely . The sound of a familiar voice is meant to comfort . We haven’t tried it yet . 10)exercise in bed , facilitated through private hired help . We did only a few times due to cost but it was motivating enough to get him moving and eventually led to him getting out of bed . Gently light movements with someone who knows what they are doing . despite the crazy cost the few times we did this it was awe inspiring. 11) Spa days from bed : hand massage , shoulder rubs , hair trim , shave , nails ( maybe a nice polish for your mom )a favourite drink And great music. I wish you both peace and if possible, moments of happiness . 💕
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Talk to everyone you know and have them find funny cards, sweet card, and write letters. When we cleaned out my Dad's house after he died, he had eery card swent to him right by his chair. I'm 62 years old and still get a tinge of excitement when I go to the mailbox. Try that. It made my dad's day and he treasured his cards and letters.
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