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?
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 . 💕
She has parkinsons recently diagnosed, dementia but its not real bad so she is aware of everything, depression, UTIs... I live near by so i can visit 2 to 3 times a week . her husband goes about 5 or 6 days from 4 pm to 7 or 8 pm.. and its still not good enough for her... my brother comes from out of state once a month and her girlfriend tries to visit every other week.. I never see anyone have visitors like my mom... its so sad
She pleads to go home and i struggle with this her husband can't deal with it.. it is draining emotionally after 3 hours with her... my mom too has kicked out caregivers, hospice help.. i tell her she has choices to accept the help or not.. a lot of it is losing control and their independence. I hired extra caregiver to come in to spend time with her she was not happy. Its so difficult... i think i would move her closer to you whatever gives YOU peace of mind... its your personal decision. No good answers unfortunately
Its understandable that the elderly want to be around familiar settings, with the people they love. Your mother isn't the type of person to mingle. Staff is limited and do not have the time to draw her into activities. Your scenario is very similar to my ex-MIL who - at 96 - still hates where she is and doesn't think she belongs there with "those kind of people". There's no place like home, of course!
I'm not sure she would be happy in another facility that was nearby to you either, but you could ask her. At least you could see her more often, and manage her care hands-on. Your mind will be eased too, if she were near you. Perhaps you should take the time to visit some places nearby you to see if it's a workable option. I wish you the best.
Does the facility have a therapy animal program? Many do, perhaps something could be arranged if not. I understand why it’s impossible for these facilities to allow pets but it is a shame for residents like your mom. While it isn’t the same of course might she take some comfort in a stuffed toy that feels like a real cat or something else if you think a cat might make her miss the real thing more? Just something to cuttle and pet, talk to even. How about a plant to take care of, again not the same but something that needs her care without too much demand.
It sounds like she is in the right place and living situation but if you were to even consider a move I would urge you to make that closer to you, if you could find the right place and not back to living in her home or yours, it sounds like she is far beyond that at this point even though it might mean her cat could rejoin her, remember allergies could limit care staff availability, she has already made the move to a facility where she is cared for and safe. You did mention however that she is on Hospice, meaning she qualifies, are there any residential Hospice facilities either near you or her? Sometimes they are more apt to have therapy pets around or something like that, more relaxed rules since they are all about making their patients comfortable and happy rather than as healthy as possible and extending their lives.
I can relate to how hard this is emotionally and physically, living too far away for daily or weekly visits and knowing Mom is unhappy but keep in mind very few of us are happy all of our lives, especially nearing the end of life with health issues, we all have to give things up we don’t really want to. You have done and are doing everything you possibly can to honor your mother, you have her in the best living situation possible meeting her wishes as best you can, safe and cared for, you found a way for her to see and talk to you every day, you make the time to travel to her once a month and you continue to look for ways to make her time here on earth better, she is a lucky woman. You are a special daughter. Thoughts are with you.
care. If COVID is preventing getting home care, get on a list to find someone fully vaccinated or advertise for someone fully vaccinated. See if their are local agencies with friendly visitors who might be fully vaccinated. Looks for solutions that don’t break your heart or theirs.
”Just take them home and hire people!” Is not an instant solution.
You can find these people (of course, pay them better than I did).
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.
I wonder, too, if you calling every single day is enabling her to isolate herself. What if you weren't "able" to call one day? What would she do? Might she be willing to engage with others to have something to do?
I like lealonnie1's posting below: scheduling other visitors would be great too, including visiting service pets.
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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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
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.
She should already have the hospice nurse coming once a week and aides coming at least twice a week to bathe her, but she might benefit from some of their other services.
You are already doing what you can to make your moms life a little more enjoyable, and that's really all you can do. If she's choosing not to participate in what's being offered at the facility, that is on her, not you.
Some people as they age choose to be miserable and there's really not much you can do to change that. Just continue to let her know that you love her and will be there for her when you can. Best wishes.
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.