Mother with early-onset dementia - advice?

SAL

This is my first time posting here, and I'm looking for some advice. My 70-year-old mother has early-onset dementia. She is extremely independent - she lives alone in an apartment, still works outside of the house, spends much of her time alone. She has had symptoms of memory loss, speech disturbance, and TIA. She's had a couple episodes recently that scared her enough to go to the neurologist for MRI and CT scan. We're waiting to hear from the doctor to discuss results.

We're starting to have long-term planning discussions, but they've been touch and go. My hope is to come to some decisions as a family to help support her independence as long as we can. She's been hesitant to discuss - it's incredibly scary and she'll often shut the conversation down. If her health declines, she does not want to be put in an assisted living facility. She doesn't want us spending thousands of dollars a month on her care. Her moving in with my sister or me isn't an option at the moment. I'm hoping to plan for in-home care, but she also doesn't trust a lot of people and is extremely wary of people coming into her home. I'm also not exactly sure at the moment how we'll pay for this. But I think that would be the ultimate goal so she can remain as independent as possible for as long as possible.

One of the tough things is she still seems so young. She's not very social - she doesn't trust the things that come out of her mouth sometimes, and she can be pretty volatile - so she isolates. The depression can also be debilitating. However, she does enjoy still getting out and about and has a desire to be engaged with people/the world in places she is familiar.

I'm being persistent with the conversations, but I'm also feeling a little stuck. I'm not sure exactly how to navigate this. Long-term care planning, how to advise her on diet and ways to stay healthy (she does not want to make any lifestyle changes), her anti-social behavior... Any advice - resources, lessons learned, etc. - is greatly appreciated.

M1

welcome to the forum. I don't think age 70 qualifies as "early onset," but that's probably by the by. Some of the things you are describing--isolation, unwillingness to plan--are part of the dementia too.

You need to get with a certified elder law attorney asap, about arranging powers of attorney for finances/legal matters and for health care, and to assess her finances for care now and in the future. These need to be done while she can still consent and sign, and don't be surprised if you meet with resistance--one tactic to convince her may be to tell her you are updating your papers too, and to stress to her that she gets to make these decisions if she does it now. I wouldn't make any promises about what kind of help or living arrangements she may need down the road. You need to keep all of your options open. But perhaps you can be noncommittal about that.

You probably should also educate yourself about anosognosia--this is also a common feature of dementia, and it's not denial, it's a true inability to appreciate that there is anything wrong. It can really complicate your life, so better to be prepared.

Sorry that you and your sister are facing this, it's a tough road.

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jfkoc

Every adult in our family has their Legal matters (DPOA and Trusts) in place along with living wills etc. Make the appointment for all of you. Ask your mother to go with you and then out to lunch. No need to tell her it is about her.

BTW...do let the attorney know about the plan.