Newly Diagnosed(5)

jmicarelli

My mom was recently diagnosed with Alzheimers. She is 62. She lives alone currently. She's fiercely independent still wants to live alone, she is still doing laundry, bathing, chores, bills, driving etc. She cooks mostly in microwave. She us no longer baking which she always loved. The symptoms are with language-not finding right words, not following conversations as quickly, having to repeat myself a few times for her to understand. I always wondering why she would need to nap after doing bills and laundry- like she climbed a mountain- now I understand. She is shy, introverted, will hate idea of home health aide coming in, abd not sure is 100 percent necessary yet. What are your suggestions in keeping her independent as long as possible? What steps would you take if you were me to keep her safe? I've talked to her about living with me but she's not ready yet. I have a family so I can't move with her. How do you know when things get worse and when I'll need to worry about wandering, getting lost, not knowing how to use appliances, when she should stop driving? Any help, suggestions etc are welcome. I just want to keep her safe and happy and independent as she wants it fir as long as I can.

Cosmic

I don't chime in here very often but I read every day.

Since your mom is still cognative and mobile I would suggest the both of you see an estate planner or attourney to get some vital paper work complete. Tell her you have made an appointment with an attourney to make/revise her will, set up a trust assign poa, etc. These documents should be done early since if the time ever comes in a few years if/when she needs to be moved to managed care the gov't will not start dipping into her finances or estate.

I know there is a lot more invloved here and others are more qualified than I. Just a few suggestions to think about.

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harshedbuzz

Hi and welcome.

I am sorry for the reason you are here-especially given your DM's age- but glad you found the site.

If your mom does not have the necessary documents to allow you to act on her behalf when the time comes, you should seek out the advice of a certified elder law attorney. 

National Elder Law Foundation (nelf.org)

You'll need POAs for healthcare and financial decisions. Cosmic is talking about setting up Trusts to preserve assets in the event she needs to move to MC or a SNF. There are ways to do this is most states, and it is accepted if a family is looking to protect a spouse or a child with special needs but it can be controversial in the context of qualifying a person for Medicaid (meant to be a safety net) who can afford to fund their own care in order to leave an inheritance. I have a cousin who attempted to do something like this and was shown the door by the first 2 lawyers she saw. (It was complicated; my grandmother had a 1/2 share in the home- because she put money down to buy it but never paid on the mortgage or upkeep- as they lived together. Ultimately, my cousin was entitled to keep the house under a Medicaid rule that allowed her as caregiver for many years to keep the house)

Also, if she does have some assets and needs to go into care, you will have a better range of options in terms of which facilities you can choose. Even if she outlives her money and ends up on Medicaid, many of the nicer places that take Medicaid expect a resident to self-pay for 2-3 years before converting. 

The hard part for you is going to be finding that critical balance between safety and allowing "independence". When there is a conflict between the two, safety comes first. There are two factors that could complicate this.  The first is that for many, EO Alzheimer's progresses more rapidly than it does in an elderly person which means changes in ability could happen before you expect them. The second is that many PWD also have anosognosia which is an inability to know that they've had a shift in cognition, memory and abilities which means pointing out that they can no longer do "x, y, z" will result in them feeling gaslit and insulted. You will need to abandon reason and use work-arounds like therapeutic fibs to accept care.

Do you have a sense of her stage of dementia? Ironically, it can be very hard for an adult child who lives locally to have a clear sense of how a PWD is faring even if they visit routinely. It is really only when you spend several days around the clock that you get a real feel for how well they're doing. I suggest you invent a fiblet and do this asap. You might think she's OK to microwave, but she might be setting the timer for 60 minutes instead or 60 seconds or heating up food that's been sitting in her fridge for months. You do need to do a deep dive into her finances and understand what she has, where it is and lock it down so she doesn't fall prey to scammers. My own dad day-traded away $350K in the early middle stages of dementia. It might be best if she didn't have internet access depending on where she is in terms of progression. 

Stages of Dementia Dr. Tam Cummings

Driving? The safest answer for that is that she stops now. The problem is, even if she is OK to drive at the moment she could slip in terms of ability without you knowing and either drive off somewhere with tragic consequences or having an accident and being sued. You should contact her insurance company to see if her policy covers her with a dementia diagnosis on her medical record. She could be sued and lose everything.

There are specially trained OTs who can test for safety driving, but that's a snapshot in time and will not be predictive of when she needs to stop. At the top of this page there's a tab labeled "solutions" that has information on driving.

Good luck.

HB