My younger sister from out-of-town, who is 71 and with her own health problems, has been staying with her for several months. She has been camped out in her living room. I go a few afternoons a week. Our brother, 69, who lives 4 hours away, comes for several days every couple of months and my sister stays with me (also camped out in my living room), but he works. An aide comes 4 hours a day, in the morning.
When mom isn’t sitting in her wheelchair in the park for hours at a time (probably not possible when cold weather comes) she sits in the den doing NOTHING. She can’t read (even large-print material) and can’t see or hear TV. She doesn’t want anyone to read to her. She used to be VERY independent, but not anymore. She has meltdowns if she’s left alone in the den for any amount of time. She has many episodes of confusion, disorientation, memory loss from one minute to the next, paranoia, nastiness, occasional visual and sound hallucinations, obsesses over things, etc. She’s never been a happy person, has always been cynical, sometimes nasty, so some of her behavior is not new, just more of it. Who can blame her? Her life is so awful.
She’s in home hospice but has no terminal illness. She was in it in the past but was moved out because she was stable. She’s in again because she was hospitalized for two days with anemia. But the hospice program, as supportive as it can be, is limited.
My mom has LTI, but it pays only $100 a day, which only almost covers the 4 hours a day for an aide and has a lifetime cap. She has no assets (as opposed to income), so Medicaid might be in the future depending on how long she lives.
We’re trying to decide what to do: 24/7 aides, AL, memory care? She won’t be happy no matter what, but she’s not happy now. We need to make sure she’s well cared for and safe, and that we can maintain our sanity and have some semblance of a normal life.
We’re now trending toward AL or maybe Memory Care, but it’s so hard to think of her there because of her hearing and vision loss, lack of mobility, and her general depression. Who would she have as friends? How do we know if staff would be compassionate and care for her? She was adamant about not leaving her apartment when I talked to her about AL as a possible option a few months ago, but she has declined since then, especially emotionally/cognitively. At the same time, she hates having an aide with her all the time. But she also knows my sister can’t stay forever, that she has to leave, and she has told her she should leave.
We’re all stressed out. Any suggestions from people with similar experiences? What to do? How to talk to my mom? would be appreciated.
That said, I don't know what games your mother is playing with her on again/off again confusion and memory lapses, but it's not dementia you're dealing with. Perhaps Skilled Nursing would be her best bet if she qualifies by needing help with at least 2 ADLs. 24/7 HHAs would also suffice if you choose to go that route. Honestly, at nearly 103, 'good health' or not, and on hospice care as it stands right now, I would imagine your mother's days are numbered. At this stage of the game, I don't think it's realistic for you to expect her to do much of ANYTHING but sit in her wheelchair and vegetate. It's common for an elder of that age to sleep on and off all day long, and it's not due to 'dementia' but to being 102 almost 103 years of age! What are you expecting her to DO, in reality???
If your sister is burned out to a crisp and reacting to her mom with anger, I'd say get her placed in a SNF asap. I think she's way too advanced with her needs for AL b/c AL residents are expected to have a minimum of needs, in reality. The aides are at about a 20:1 ratio in AL and no, they would not be meeting your mother's myriad needs at such a ratio! I feel like a SNF would be better suited to her needs in general.
Whatever you decide to do, wishing you the best of luck.
She has totally lucid, appropriate conversations on the phone (she uses a CapTel machine, which transcribes the other person’s end of the conversation in very large print). She passes cognition tests with flying colors—drawing the time on clocks, counting backward by 7s from 100, the name of the president. People think she’s fine. But when the phone calls or visits are over, she lapses back into confusion. “Who was that?” or “What am I supposed to do?”
She tells people (mainly my brother the saint) many things that are totally untrue, either from forgetfulness, or misinterpretation, confusion, whatever.
She insists that “someone” ate the soup she had saved, but she had eaten it. Then she gets angry when we tell her she ate it. She insisted that the sweater she wears everyday belonged to someone else and wanted my sister to post a notice in her building lobby. She tells my brother that my sister never talks to her and doesn’t do anything for her. Etc.
Our big concern is my mom’s severe hearing loss combined with increasing cognitive decline and inability to walk or do much of anything. (Aside from that, she’s basically pretty healthy, except for her age—she’s about to turn 103.) Our question is still, will she get the attention and care that she needs at an AL, or should we get 24/7 HHAs?
She has never been interested in any kind of activities, and that continues. She does not talk to the aides who come every day for a few hours (the same one comes weekdays, different ones on weekends). She sleeps on and off all day long, common for dementia but probably also out of boredom, since she can’t even see the TV and has nothing to
Staff at the ALs assure us that they understand and are used to “residents” like my mom.
Those pictures on ads for ALs or HHAs of elderly people smiling and sharing with their caregivers definitely do not apply here! And, as I said in my original post, she can be NASTY and manipulative.
My sister, who has a house in another state, is still camped out in the living room, often finds herself reacting to our mom with anger, and wants/needs to leave, for her own health and sanity.
I felt so sorry that my Mom was dealing with those issues and I knew she wasn't happy. Gone were the days of her being able to read books, bio's of famous people, and for her to watch sports, mainly football and golf. Her hearing was limited even with hearing aides. Mom could walk using a cane but it wasn't easy.
Yet I was amazed at how my Mom knew her way around the house with such limited vision. She knew where everything was in the kitchen, in the cupboards and in the refrigerator. Whenever I bought over groceries, she would shoo Dad out of the kitchen because SHE wanted to put things away, that way she could remember where each item was.
Mom did have some issues with dementia, mainly filtering what she said.
Another thing I learned, a senior citizen should not be caring for old senior citizens. My parents still viewed me as someone in their 20's with a ton of energy instead of being in my 60's and 70's.... nope, that ship had sailed.
Being your Mom is 102, if she can afford it, have caregivers come to her. Telling caregivers to put back everything in the same place in case Mom wanted that item. Moving her elsewhere Mom would be so lost and may not be able to learn her way around. She would be afraid to touch anything in a new room, not knowing where certain items are. So totally lost.
Reading your situation makes me have a different perspective and appreciation for terminal diseases. They are the tickets to exit the life train. If you have none and keep living to super old age, you might end up in situation like your mother. That to me is worse. I don't wish that for me or anyone I know.
You can morally and ethically tell her a therapeutic fib: that she needs to go to a temporary apartment because the house has a dangerous gas leak or infestation, etc. Yes it is true that she'll be unhappy no matter where she winds up. Her melting down when she's alone is called Shadowing. My 100-yr old Aunt does this to her sister all day long and there's no solution for it.
Do not attempt to use reason or logic with her, get her to agree or cooperate, or get her to be "empathetic" to your situation -- she is past that and has no ability to do that anymore. I wish you all the best as you figure out a solution.
My mother was 92 when I moved her into a Memory Care ALF and she DID get wonderful, compassionate care there from a team of truly loving people. She did make a few friends too that she was able to talk to and eat meals with; it was a small place, only 23 residents in all. Mom was an unhappy woman too, always complaining, nearly deaf, totally wheelchair bound and reliant on the staff to help her with virtually EVERYTHING.
As far as 'talking' to your mother about all of this, with dementia at play, don't expect to get her to agree to it or be enthusiastic about moving. Like you said, though, the goal here is to keep her safe and cared for 24/7, nothing more. She'll be unhappy no matter WHERE she lives b/c life at 102 with this level of illness at play is going to BE unhappy, period. That's just what life boils down to with advanced old age at play, and there's nothing we 'children' can do to 'fix' that fact either. What your job is, is to make sure she's safe; then you siblings can go back to being mom's children again and visitors who go see her with the gift of your presence now instead of indentured servants. Let mom know that at your age(s), you can no longer be sleeping in her living room and trying to care for her at 102 b/c it's out of the scope of your abilities now. She needs more care than any of you are equipped to provide her. So you've collectively made the decision to place her in managed care where you'll all come to visit her on a regular basis. We love you mom and this decision is based on that love.
Wishing you the best of luck finding a managed care facility that meets your mom's needs.