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Hi Everybody , I’m new here and just need to tell my story with the hopes that some of you that have gone before me might have advise for me. My mom is 89 and was diagnosed w vascular dementia 2 years ago. She lives alone and still drives. I’m in California and she’s in Connecticut. She’s at the stage where she can’t find words to complete sentences. I end up trying to guess what she is wanting to say. It’s exhausting for both of us and she is isolating so she doesn’t have to talk to people. She’s very strong willed and fights me on every decision I suggest. Do I just come right out and say that we need to discuss the dementia and her wishes for when she is unable to live alone? I know she wants to stay in her house and she has limited funds but I think we will be able to do it. Am I going to wait until she’s incapacitated to take action? What should I be preparing for? I am waiting for the other shoe to drop. I went through aggressive chemotherapy 13 years ago and it was a cake walk compared to the deep grief and pain I feel. Thank you and God bless you all.

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You are getting good advice here.

I suggest two books: "Loving Someone Who Has Dementia" by Pauline Boss, and "Being Mortal" by Atul Gawande.
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YEP, I would try to find a care giving service to help you with these steps. We have one in town and for a monthly fee they have helped me contact attorneys to get the proper paper work, doctors offices, caregiver options, etc. I have found them to be invaluable. Get that set up, do a couple phone interviews to pick an attorney etc., plan a trip to see your Mom for a week, and have appointments set up with the doctor, the lawyer, the bank etc. Even if you can't get POA, see if you can get signature authority on her bank account so that you could at least help pay her bills if she becomes incapacitated.
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In order to do anything for her, you must have POA, if you don't and cannot obtain it, you're stuck.

Wow--do NOT wait for that other shoe to drop, it will be far too late by then. Wehave to be proactive in our elder's care, kind of always being one step ahead of them, as it were.

It's very hard that you're distanced so much--nobody in CT to talk to her for you, she's completely alone? Then it's time for a boots on the ground visit home to assess things and have "the talk" with mom. Doing everything long distance will drive you nuts.

Try to stay ahead of the game. OF COURSE she's strong willed and fights you on everything--EVERYBODY on this board has a similar parent!!

Good Luck!
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CT has aging services that helps with options for maintaining aging at home. Check out CDR-CT.org for options. It sounds like incapacitation will arrive soon. What are her options if she cannot drive? How will she get her food? Did you know that CT has one of the highest nursing home rates starting around 8.5 K? I recommend that you start considering staying a step ahead of her. Learn about eventually filing for Medicade for her because she certainly will not be able to do it. Also if she has an accident or becomes hospitalized, tnen you will definately need to take time off to arrange for maintaining her home and working through those transfers from hospital to rehab to home to long term care.
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Dear Shellroc2977,

If you don't have Power of Attorney (POA) over your mom you must get it immediately. Once her dementia becomes apparent she will be deemed incompetent and unable to sign anything.

Yes, discuss the dementia with her. If she refuses to discuss it then go on to discuss what her wishes are when the time comes when she is no longer able to live alone. She may feel that that day will never come but it will. But if that's the way she feels and doesn't want to discuss it then just drop it.

Many families have to wait until there's an emergency before making changes. This is usually because the elderly person refuses to acknowledge their illness or their inability to live on their own. They refuse all help and insist on doing things their way. This usually ends in some kind of emergency and that's when changes are usually made. It's not an ideal situation but sometimes it's necessary.

You are waiting for the other shoe to drop. Today your mom's OK but tomorrow she may fall and break her hip or leave something on the stove and create a fire. There's nothing specific you should be preparing for but prepare yourself that there will come a time when your mom will not be able to live alone anymore. You said she has limited funds. How will she be able to stay in her home with limited funds? In-home caregivers cost thousands of dollars a month.

Know that there will probably be some kind of an event that will make it clear that your mom won't be able to stay in her home. Begin thinking about that. What will you do? Will your mom move to California or will you move to Connecticut? Will she live with you or in a facility? Familiarize yourself with assisted living and memory care. Arm yourself with as much information as you can for if and when the time comes.

It's so difficult to watch out parents begin a slow decline into dementia or physical illness. I took care of both of my parents at different times and when I'd look at them it was often through the eyes of the child I once was. They were once vital and funny, wonderful parents, loving grandparents. I know how difficult it is.
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