I always tell her I don’t know. I know she can’t go home, she doesn’t. Caregivers there tell her covid is going on and she needs to stay there. I remind her that they are taking good care of her there. I feel guilty. Do they ever stop asking? Is this normal? Sometimes she says she’s in prison, not sure, if she’s joking or not... I don’t ask. She doesn’t realize she has dementia
I don't feel 'guilty' about keeping her safe & secure in Memory Care, b/c she'll be miserable & complaining no matter WHERE she lives. My mother hasn't had more than a day or two of happiness in her entire LIFE, in reality. I do feel sadness and a bit of grief for both of us b/c of the level of misery we're both exposed to on a daily basis, however. THAT is what's sad. There are some people who are happy at my mother's MC; they smile and they're content. And then there's my mother who's snarling and angry all the time, looking to create a problem even when one does not exist. And I am the only child and the only person in her life who gets to be the sounding board for ALL of it. She also refuses to acknowledge she has dementia or that there is anything at ALL wrong with her. Again, it makes for a no-win situation.
Even elders with dementia who DO live at home talk about wanting to 'go home', so knowing that should make it easier for you deal with what your mother is saying! "Going home" is more representative of wanting to be at a better place in time than an actual brick & mortar building, for those suffering from dementia.
My advice to you is the same as it is for me: let go of 'guilt' and know that you're doing the best and safest thing for your mother. Guilt implies wrongdoing. Our mothers are unhappy with their age and with their infirmities, THAT is what we're seeing and hearing, I believe, more than anything. And we're trying to fix that which is unfixable. Set down some boundaries for YOU now. When and how long you will speak with her; when and how long you will visit with her. When you will cut off the visit and/or the conversation when it becomes too toxic. This isn't ALL about our mothers. WE count too. OUR lives matter TOO. You are killing yourself right now cleaning out her house to finance her life in the MC, and still having to deal with the daily questions and complaints. It's a lot. And you're feeling sad, rightly so, so give yourself a break. As long as your mother is safe and well cared for, that's all you can do. You can't fix old age and dementia, much as you'd like to. And that's what this all boils down to, really. Things only continue to worsen as the condition progresses, too. Know that she's in the right place for the staff to deal with her accordingly. All you can do is love her and let her know it.
Wishing you the best of luck dealing with a difficult situation and letting yourself off the hook with the guilt aspect of things.
This is my struggle and everytime I hear her say she wants to go home, to her home of 60 years, I physically feel pain for her. It has taken a tremendous toll on every aspect of my life.
She doesn't recall ANY of my previous visits. She wants to 'come home' but she's forgotten where we live (even tho she lived with hub and me since 2002). And forgotten how miserable and grumpy she was when she was here!
The carer I spoke to said she'd had a lovely day yesterday sitting outside in the sun - she'd had to persuade mum to go inside at 9pm! But mum only really lives in the moment now and that's so hard to accept, especially when my visits just unsettle her. My heart bleeds for her and for everyone here. It does help though to know I'm not alone. xxx
This is important to focus on. With you being there to visit, it is likely triggering some older memories, so she gets into that going home routine.
Clearly she's "fine" after you leave and is distracted/redirected by something, tea, coffee, snacks, meals, a little time out in the sun, etc.
Two months in really nothing in the scale. It could take longer before she might stop, although some continue periodically with the "going home" routine. It is hard, but reassure her that you're working on it with her doctors, or some other issue like home repairs, virus, etc (I know, it's not the truth, but if it works, why not? Some insist we be honest, but to what end? They don't remember and the merry-go-round spins again. Sometimes home isn't even what we might think it is!), then try to distract her. Bring items like magazines to look at, ask about long past events (you'd be surprised what you might learn from that!), snacks, a walk in safe outside areas, etc. Anything to push the thoughts back and get them onto something else. I often liken this to a scratch on a record, where it will play the same thing over and over until you can nudge it past the scratch.
Yes, it will come back, but we have to understand that and find ways to move the mind along onto something else. It doesn't always work, but as we get better at it, and the condition progresses, there should be less of the "going home" begging.
Her telling you she feels like she's in prison is certainly not joking, it's her perception of her environment. After all, MC IS a secured area. So deal with it as best you can, and what you and the staff are doing now is appropriate, knowing “That, too, will pass”.
I would agree. Some websites make it sound like it is SO easy to manage care for someone with dementia. The problem is it's not like any other medical issue. It affects each person in an individual way, depending on the underlying cause, what part of the brain is affected (which can change over time as it progresses), the person's personality, relationships with family and background. There is no real one-size-fits-all.
Certainly the information provided helps us to understand a bit more, know what we might expect, and provides a little information on how to deal with some aspects, but never will any one document or website be able to plug our LO into a slot.
Many point to Teepa videos. Perhaps some are useful, but the one I tried watching was just so condescending that I've never watched another. Patching together what I could learn online and monitoring my own mother's progression was all I had. I could see similar behaviors and symptoms in others, but I could also see different behaviors and symptoms in some. How to deal with them is as different as how we have to deal with various people we encounter in life, as no two people are alike. Dementia just makes it more difficult, as you might be able to reason with those without cognitive issues (not always!), but you can't always reason with dementia. Some methods work, others don't. We just have to try to "go with the flow" and gear our care and responses accordingly.
She does not realize how compromised she truly is. And I repeat that to myself often.
Heartbreaking as it was to pare down her prized possessions and sell her house, it had to be done. She could not live there anymore and it's a legal issue when nursing home and Medicaid are in the mix. Just today she informed me that her dear friend had recently been hospitalized, but she didn't go see her friend because "I didn't find out in time" that she was in the hospital. ?????? Nope. Not the reason. She would have no physical means to get to the hospital (other than an ambulette), she would need 100% assistance just to get to her friend's room, and she would be lucky not to have a fall or medical emergency herself while visiting her friend! Sad truth is that she might not even have remembered the visit - even if there was a realistic way to get her there.
I'm so sorry about what you're going through, but you made the right decision. Cleaning out the house hurts so badly as it seems so final.
”When it gets a little warmer (cooler)”. And is comforted and satisfied by hearing it.
This is a pretty common occurrence among newly rehoused people with dementia, and normal, and also typically much more painful for caregivers than for their LOs.
After several months, my LO would often talk about how pleasant “the hotel” where she was living was. I was grateful that she was no longer searching for the place where she was born, 90 years before.