Before diagnosis

jae1940 · July 6

My dad has not been diagnosed yet but we are in a difficult situation. My dad is having short term memory loss issues. He is 86. He is a physician and probably the smartest man I have ever known. He has always been the patriarch of the family and in charge of everything. He does not want to relinquish any of that control. As he says he is still the father. Since his retirement a year ago he has started to repeat himself over and over. He is clearly struggling but refuses to see a dr. He says he is just a little forgetful. He is still driving and living a relatively active. My mom is very angry and annoyed with his repetitive questions or stories. I don’t know how to help. He will not see a dr and I think it’s because he is at some level aware of what is happening and doesn’t want to hear it. Any suggestions for the best approach to deal with this would be appreciated.

H1235 · July 6

Welcome. Many people with dementia suffer from anosognosia. This is an inability to recognize their symptoms or limitations. It can be very difficult. For many there is no amount of evidence that will convince them something is wrong and trying often leads to an argument. I showed my mom the report from the neurologist that said she had dementia and she said the doctor didn’t know what they were doing. In the past, the doctor knew everything. Unfortunately to get him to the doctor you are probably going to need to be a bit creative and probably not entirely honest. I know that feels so incredibly wrong. I often communicated with my moms doctor through the patient portal (she never used it). If that’s not an option, I would suggest a note to his pcp explaining what you are seeing (give examples). I will attach the dbat. You can use that to see if there are any other symptoms you didn’t realize were symptoms. Ask if he could be called into the office for something else. Tell him the memory evaluation is something new and now standard procedure after a certain age. It’s ok to fib.When the pcp evaluated mom they found no problems, I had to insist on a referral to a neurologist. The neurologist said she shouldn’t be driving and was not safe to live alone. My point is if this test doesn’t show a problem, don’t use let it go. You know your dad best. It is extremely important that legal matters are all in order. Again I would not tell him this is related to his memory. Explain that it’s just something that he should make sure is all in order now that he is retired and getting older. A DPOA is very important along with a will and living will. Dementia can be very expensive. It’s probably a good idea for your mom to discuss financial planning with a lawyer as well. I will attach a few resources.

understanding-the-dementia-experience.pdf

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

psg712 · July 9

It's going to be extra challenging with a high functioning, well educated man who is accustomed to being the decision maker. Sometimes in these early stages, they do have a small sense that they are losing their grip and so become even more rigidly controlling. I agree with trying to get information to his doctor without your dad knowing about the conversation. Even so, does this doctor see your dad as a respected colleague, or as an elderly patient who needs cognitive evaluation? In the earlier stages, many PWD can "showtime" in front of others while struggling at home. Your dad still knows how to talk like a doctor to another doctor, and it's unlikely he'll say he needs help, especially to a colleague whose respect he desires. Sometimes, sadly, things have to get a little worse before you can get real help.

Do your best to support your mom too. Her anger may partly be coming from fear ... she sees what is happening to your dad (but maybe doesn't want to acknowledge it), and it rocks her world. Especially if he was always the one in charge of things. It's super scary to have your rock turning to sand ... my heart goes out to her and to you.

sshoja · July 9

Hi there, my mom up to this day deny there is anything wrong with her but once a while says she feels nothing make sense anymore to her. But two years ago, I asked family Dr. to ask for an MRI as general routine check. MRI showed some mini stroke which most likely were the cause of Vascular Dementia in mom.

I also took her to memory clinic for assessment (but told her we are going to a general routine for 80+). During assessment she got very upset too but they could see the limitation of memory right away.

My mom was a very smart individual who was manager of school but today she act more like a child without her control. So knowing what they suffer from sooner, will help you to find the right solution in proper time. Pray for your family strength.

notequipped · July 9

Great advice above. Just wanted to add that in my state you can report an unsafe driver to the division of motor vehicles. They have a medical review unit that evaluates each reported case. Worth looking into in your state. In the meantime, perhaps you can make the car not work, move it, have it towed, etc? He won’t like it but it’s a safety issue. Does your Mom drive?

Similar to the suggestion above, I called my Mom’s PCP and they gave me an email address where I sent a very lengthy email and provided very specific instances of my concerns. She handled it very well at my Mom’s next appointment.

Even in my Mom’s current state, she is pretty insistent that there is nothing wrong with her. My Mom was diagnosed with MCI (Stage 2 on the DBAT) 2 years ago. My Dad passed away in late February and we realized that she had progressed quite a bit. She either skipped over completely or fast forwarded through a stage or two. In retrospect, the biggest piece of advice I would give myself is to act quickly. Don’t be lulled into thinking that you have time. My Mom’s DPOA won’t be signed for another week and a half. I’m more than a little worried about the timing.

Another tidbit that I’ve learned is that most of the time I don’t discuss things with her ahead of time, I just do it. Giving her time to stew about something she has deemed to be unnecessary doesn’t work.

caregiving daughter · July 9

I will not comment on the driving as others have; however, safety of your loved ones and others is of the utmost importance. I would recommend your mom get educated on the illness. Once she understands it, she will have an easier time being patient with stories told over and over. Your dad needs a quiet, calm environment, with a lot of love and support. I had found that live support groups or trainings, from your community, often sponsored by this association, to be the most helpful for education. Please hang in there.

SusanB-dil · July 9

Agreeing - Do get the DPOA paperwork in order if it isn't. You can consult with a CLEC lawyer (elder care specialist). You can try to tell dad this is for the future. Sometimes the lawyer can get them to sign (for the future, of course)

If you do not have HIPAA accesses, you can still tell his doc what is going on, they are just not able to reply back to you.

As for driving, if he has issues, if there is an accident, insurance may not cover it.

I'm sorry you are dealing with 'this'. Do make sure your mom gets some respite from this as well.

Rule #1: Don't argue with a PWD. Rule #1: Must take care of the caregiver. Rule #2: See rule #1, both of them.

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