My mother has been very recently diagnosed with vascular dementia and Alzheimer’s. She is 66. She lives alone about 2 miles from me and my husband. She is finally living her own life as she was taking care of my grandmother until she passed last October. My mom has always taken care of someone else up until June when she moved out of my grandmothers home and began living in her own home - this is supposed to be her time.
We’re noticing a big change in her: short term memory loss, repeating herself, not following stories, lack of apathy, she gets startled easily, she fell and shattered her elbow. It has been an exhausting fight to get her to doctors and it’s all fallen on me. I’m exhausted and heartbroken. I was told she has vascular dementia, typically patients don’t live so long with vascular dementia in comparison to other forms of dementia...average life after diagnosis 4 years.
My brother is flying home to go to the dr with me to tell my mom...however, I’m not sure this is the right decision. I’m wresting with the fact that she lives alone, I need to become her POA with her finances and health and put her money in my name in case she lives long enough to get Medicaid - NYS has a 5 year look back. I can’t do these things without her knowing she’s sick.
My mother is not someone who faces issues, she lives with her head in the sand. This is how she got vascular dementia - untreated high blood pressure for probably 20-25 years. The dr has mentioned dementia in front of her but she ignored it.
Shes likely in the earlier stages, still driving, etc. My reasons for telling her is it is her right to know though I know she doesn’t want to know, to get her money in my name to protect her, because she lives alone which complicates things a lot. If she were married and taken care of in not living alone, I would not tell her.
Any advice is hugely appreciated. I’m lost and so confused. This has completely fallen on me.
Technically if she already has been diagnosed it is already too late but a good doctor would understand though the sooner you can complete the finance and health forms the better.
You dont even need to tell her of the dementia if this would add distress, confusion and even distrust - just stress that the POA is simply a preventative measure for if/when needed in order that you can ensure that her health and finances are looked after as she would want. Then implement it once a doctor agrees that it is necessary.
Tough time, Be kind to yourself too during this.
My advice goes to absolute honesty. It is what I WANT from those who care for me. I was a nurse and in the beginning of my career some families didn't tell loved ones about cancers. It was the cruelest thing I ever saw.
Please be honest. Please gather her finances and make them available to HER CARE, without hiding them or attempting to. That will put you in a world of potential pain. Now is the time for honesty all the way found as I see it. Wishing you the very very best of luck moving forward. This will change things, likely your entire relationship. Know that, as there is little way to get around it. But you can really help now. Do it with scrupulous honesty would be my advice.
after speaking with our lawyer, she said the best way to get her services is to eventually get her on Medicaid. Again, there’s a 5 year look back period. If she holds on long enough, we can get her nurses to take care of her at her home until she doesn’t know what’s going on...then a nursing home.
she has Medicare and that really doesn’t help. In my area it’s $15,000 a week for a nursing home/24 hour nurses. This is not affordable to 99.9% of the population
i do not want to tell her but I want to protect her and make sure she’s taken care of.
Thank you again for your insight
How much are you willing to do? Move into her place? Move her in with you? Become her 24/7 caregiver?
Do you have siblings? What do they say?
(For what it's worth, she may not believe that she has dementia. My mother was not told. She would not have believed it.)
Dementia:
My dads dementia was obvious, moms not so much. I chose not to confront or try to explain it to either of them. It would have created world war 3. However I had some success in convincing them that were pretty damn old now, your memories aren’t that good and you’d better let me help out with finances and so on.
The other issue is POA. This is a must have thing but better act now while mom is allegedly competent. And if mom won’t grant POA you’d better start researching this site for guardianship info.
I would NOT raise the issue of dementia; it could anger, frighten, confuse or create some other response that's not helpful. And look at it this way: what would she benefit from knowing? Make sure brother's on board with this approach.
Work around it and plan for what needs to be done, telling her that you want to make sure YOU are doing everything you can to care for her, especially now that she's living alone.
Tell her that ANYONE who lives alone should take various precautions, and if you can, integrate some basics w/o frightening her. An example would be a daily check-in, getting Meals on Wheels so she has other people with whom to interact, even if for just a short time.
Arranging for friendly or neighborhood visitors is another; that way you not only broaden her scope of interaction but can get feedback from others than you might not be able to get yourself.
If you do want to ensure she's agreeable with some specific issue, give her just two options, one of which she'd definitely reject. Then, by accepting the other, you're creating the perception she still can make choices, easy ones.