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?
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.
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.
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.
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.
- - - - - -
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
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 . 💕
See All Answers