Wife memory disappearing and won't see a doctor

BillEnt · December 15

My wife of 53 years has been in memory decline for over a year and it is getting worse. She will ask the same question dozens of time a day. She doesn't want to see a doctor because her mother told her most doctors do nothing useful. For a while I was confronting her with the memory loss information but she always denies it and gets mad so I don't do that anymore since it just agitates her. She is also withdrawing from what used to be an active social life and hardly leaves the house anymore except to buy groceries or pet food. When she buys groceries she forgets to take the list and frequently buy what we already have so we can end up with dozens of boxes of the same things or if it's perishable, we end up throwing a lot away. Just looking for some advice on how to deal with this. I have a plan to get her to a doctor in a month so maybe that will help. Since she has not seen a doctor about this there is no formal diagnosis but it's real and getting worse. Any suggestions how I can handle this to help her? Get her to be more active? Tricks to help her stay organized? Anything? I'm afraid that she won't admit she has a problem until there is a disaster and I don't want that to happen.

ALCB · December 15

I'm sorry to hear this. Have any other trusted family members or friends raised concern? That might help to persuade her. You could also try hiring someone for help around the house, to go out to the grocery store etc.? I'm sorry I don't have much advice on the staying active part—my grandmother also refuses to leave her couch and we can't do much about it. Is her state a safety risk yet? If it is, I highly recommend another set of hands around the house if it's possible. Sounds like it would be distressing for her to leave home for care, so at-home care might be the better option when it comes time.

BillEnt · December 15

Thanks for your thoughts. Not a safety risk so far. Turns stove off, etc. I'm concerned this will get worse and that could be a problem in the future. If I'm lucky she won't get any worse. Our kids and everyone who knows her is aware of the problem but anyone who accuses her of having a memory problem is met with denial and/or anger so they, like me, have all backed off from saying that. She can still drive locally to the few places she always goes to but her friends have advised me to never let her drive to someplace new, even with a GPS device. She will get lost. So I always take her to new places.

eaglemom · December 15

Welcome BillEnt. I'm glad that you found us. Your questions are very common. You have a LO who won't see a doctor and needs to be seen. The LO denies that anything is 'wrong' with them, etc. You say they can drive, just not to someplace new. (Forget about her being able to understand the GPS. Sadly that's too much for her.)

One step at a time. You say you she has an appointment soon. Prior to the appointment, possibly speak with the doctor (patient portal) and voice your concerns. That way the doctor brings them up at the appointment, not you. He's or she is the bad person not you.

Have you recently ridden in the car with her? You need to do that. See how she does. Does she totally stop at stop signs? Obey the posted speed? Use the turn signal? You get the idea. However, if her friends have already told you about her driving someplace new, they are telling you they are seeing signs something is off. In all total honesty, she shouldn't be driving. You now have a new job, driving her wherever she wants to go. That is for her safety and the safety of others.

I don't want to ramble on, you get the picture. Please do come back, ask questions, rank, whatever you need. That'swhat we are here for, to help you through the bumpy journey of dementia.

eagle

H1235 · December 15

So sorry you are going through this. She is too young for the ugliness that is dementia. People with dementia often have anosognosia. This is an inability to see or recognize their symptoms and even limitations. Withdrawal from activities may be because she is having trouble with these activities. Driving is about more than getting lost. Her reaction time may not what it needs to be to be safe on the road. I would start monitoring other household tasks she does. Is laundry getting washed with detergent? Are bills being paid? Access to finances at this stage can be big trouble! Giving all your concerns and observations to the doctor before the appointment is a very good idea. A PCP will probably just do a quick a cognitive test and blood work then refer her to a neurologist, that you may not be able to get an appointment with for months. Sorry but I wouldn’t get your hopes up for answers at the appointment. Unfortunately there is not much that can be done to treat dementia, so try to prepare yourself for things not getting better. Trying to help a person with dementia stay organized is near impossible. Whatever note or cue you leave them is either ignored, too confusing or angers your loved one because they don’t believe they need help. Sorry! I would recommend making sure all legal matters are taken care of by seeing an elder law attorney. It’s about more than just a will. She will need a durable power of attorney, and a living will would also be good. You may also want to start thinking about how she will be cared for as things progress. I have attached a staging tool that you may find helpful. This forum is a great place to go with questions or even to just vent frustration.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

BillEnt · December 15

https://alzconnected.org/discussion/comment/231209#Comment_231209

Thanks. I've already taken over all the finances. She stopped being able to handle a checkbook a year ago. You are right that notes don't help, neither does putting things on a calendar. I have a durable POA and she has a living will that we both created when she was ok. Now just to be patient and help where I can. I'll figure out a way to get her to a doctor.

cdgbdr · December 15

I'm so sorry you're experiencing this. My DH was lost and the police called me to take him home. A few months later he scored zero on the resting items related to driving. The more time I spent with him, the more aware of the deficits I became. This is hard! Do reach out to the PCP before the appointment.

H1235 · December 15

I’m glad you have legal matters and finances handled. Many here have suggested getting a lo to the doctor by suggesting it’s just an annual checkup or that it’s required for health insurance reasons. Good luck.

Victoriaredux · December 16

"Any suggestions how I can handle this to help her? Get her to be more active? Tricks to help her stay organized? Anything? I'm afraid that she won't admit she has a problem until there is a disaster and I don't want that to happen."

Hi Bill— the best you can do is educate yourself . Seeing a Doctor soon is excellent— there are some diseases that can be treated that mimic dementia , so you'd want them ruled out .

If it is dementia , and be warned many doctors call it MCI [mild cognitive impairment] at first to soften the blow? because dementia has no gold standard test? But they may suggest meds that while not a cure can hold the line a bit longer in some patients. There are also some newer drugs in trial or testing - you can search for them .

For education - here is a link to a thread with resources:

https://alzconnected.org/discussion/66435/recommendations-of-videos-to-watch#latest

To read - here is a free on line book :

https://www.smashwords.com/books/view/210580

It's good you have some legal documents in place but I suggest you discuss the current situation with your lawyer or an elder law specialist if they aren't one — the disease can go on for a long time , financial planning needs to be in place if you'll need help in the home or placement at some point.

How to manage finances for medicaid if needed [ not the income version but to assist in long term care- varies a lot by state ] . You'll need to update your DPOA since, sadly, she can't be your back-up anymore. An elder law atty can also advise on tax situations , if you'll want to move at some point closer to children etc . If your wills/trusts need an update etc.

Finally, the saddest part as you can see from the above , the work falls on you . She , if it's dementia , can't change herself or the disease . Keeping her safe and calm is the best way to weather the path ahead .

That will mean you'll have to work around her , leaving you without your helpmate of 53 years . But still your wife. Keeping yourself healthy is the best way to keep her memories alive.

No one will know her or care for her as much as you. So take care of you - ask for help, explore options [ respite, adult day care, placement if that time comes]. I wish you the best.

Wife memory disappearing and won't see a doctor

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