undiagnosed parent

rcampostx

Hi there - This is my first time at any board or group. I've joined because neither me or my sister know what to do or how to move forward. My mother is 72 and physically very healthy, but I think that she has dementia, some form of Alzheimer's, or paranoia, or a combination. For the past two years or so she has been very fixated that there's someone trying to mess with her head by "taking" or "moving" her things around. She believes the person gets in her house and moves her clothes around, hides personal items and steals money. She says they want to drive her crazy and away from her home. It's been increasingly getting worse. However, when I or my sister suggest she see a doctor, she loses it. She'll cry saying that we don't believe her, that we think she's "crazy" or we don't care about what's happening to her. She says this is all she thinks about and worries day and night about her safety. She's still completely independent, pays her bills, takes care of the house, drives around, etc. My dad sees all this, too, but no one knows how to convince her to get diagnosed. Her PCP tells her she's ok (or at least that's what she tells us). I don't think that she tells him everything that she experiences. She's been seeing this same doctor for close to 30 years; not sure how he can't see there's something wrong. How do I get her to see someone else? I've offered to find a new doctor, make the appointment and drive her there. She's just so stubborn, she will not agree. Yet, things keep getting worse. What do I do?

SusanB-dil

Hi rcampostx - welcome to 'here', but sorry for the reason.

Most of us use fiblets to get our LO to do something they don't wish to (or to calm them down). Who has POA and HIPPA accesses for mom? Even if you don't have HIPPA privileges, you can still tell the doctor what is going on, they just will not be allowed to respond back to you. You can tell mom she needs a doc appt for insurance purposes, or to renew a prescription. Your mom most likely has anosognosia. This is not denial, but rather their reality that nothing is wrong.

When your mom says that 'things are missing or moving', try telling her that 'oh, ok, mom, I will certainly look into that'.

Also - are you sure she is paying her bills in a timely manner? Can someone check on that? Also check for any expired food in the fridge or pantry. And can someone please check on her driving abilities? We took MIL off the road, as she had gotten lost. Afterward, we found out she had gotten lost several times, and then she finally admitted she came to an intersection and forgot what to do.

rcampostx

Thank you for the tips. I should've mentioned that my parents are together, so my dad is with her daily and can attest that she's still paying bills timely, household in order, driving is perfect. That's what makes it all so puzzling and difficult to help. At no point does she seem confused. She picks up on fiblets just like you and I would. I'm so frustrated.

Anonymousjpl123

@rcampostx I am so sorry you are going through this with your mom, but so glad you found this forum. There is a wealth of info here from people who know what they are talking about and have been through it.

In terms of your mom: I found an old email from 2019 where I wrote “I’m really worried about my mom’s memory. Something is off.” And I listed out a few things that freaked me out. However, my dad was still alive, they were together, and I really wasn’t that involved in their day to day lives.

When my dad passed is when it all came to the surface. She had progressed so much more than any of us knew - especially since COVID. By the time I got involved it was 2 years from when I noticed her memory issues. she would never have gotten it checked by a doctor. They had pretty crappy medical care from what I could tell, but were working on it. Again, I really don’t know because I wasn’t involved.

Have you spoken to your dad? My dad wanted no part of that conversation. Your best bet may be talking to him, and finding some doctors you can recommend.

Also, read this site, learn as much as you can about Alzheimer’s/dementia. Read articles about symptoms. Read Tam Cummings’ stages of dementia. As someone said to me: information is your friend. It is so good you are starting to look at this now.

M1

You need to send detailed, explicit written communication to her doctor about what you are seeing and observing. It's almost always the families who are the first to notice symptoms. Read about anosognosia, she probably can't recognize that she's impaired. If she has given you Hippa privileges, then the doctor can respond to you; if she hasn't, they may not be able to respond but they can still take note of your observations. Your dad may not be willing to rock the boat just yet, but there will come a time when he won't be able to cover for her.

If she will let you, it would be helpful to accompany her to an appointment. But the chances of that are not especially high. Sometimes you have to wait for an emergency situation to present itself, unfortunately.

psg712

Agree with M1 on sending the details to her doctor. I did this several years ago, choosing examples of behavior that I knew would be red flags for her safety and judgment. At her next visit (scheduled conveniently while I was in town), without fanfare the doctor did the Mini Mental Status exam, among other assessments. He then told her that she needed to stop driving and allow me to pay her bills. She was HOT about the driving but blamed the doc, not me, and actually complied. It was at that point too that her doctor wrote a letter for me, advising "to whom it may concern " of her dementia diagnosis and the need to activate POA. The letter came in very handy several times.

dlawrence

My mom has not been "officially" diagnosed with dementia even though based on all of her symptoms she clearly has it. I called her PCP's office twice and gave them my observations and her PCP referred her to a neurologist twice. The first time she cried and screamed at my dad asking why he was doing this to her so he canceled the appt. She does not want to see a doctor for any reason because she thinks she is healthy and happy. Does not admit to any other issues. She has another appt. coming up and I am struggling with how to get her to agree to go. Can anyone offer any advice?

M1

Welcome to the forum Dlawrence. would it work to tell her the appointment is for you, or for your dad, and you want her to go along? I've never done this, but it's a thought. Usually the docs will go along with ruses like this as they are used to resistance. They could tell her that she is there for a "normal" comparison perhaps. I'm just thinking out loud. Others will sometimes say that it's a new Medicare requirement or you'll lose your insurance.

southerngal41

It took a lot of convincing for my family member almost a wearing down. People outside of our family were also noticing. Painful and not ideal but maybe that would encourage seeing a doc.

Quilting brings calm

Family and very close friends are the first to realize something is wrong. Doctors can’t usually tell until the person is farther along. Having trouble answering the questions on cognitive tests, etc. That’s because 1) even if they’ve seen the person for years, it’s only been once or twice a year for a short period and 2) people can ‘showtime’ when they are at the doctor. Showtime means rousing themselves to behave as normally as possible for short periods of time- acting so to speak.

Does your dad recognize that she’s different than she used to be?

dlawrence

https://alzconnected.org/discussion/comment/198660#Comment_198660

Thank you for your suggestion. I’ve done a bit more research and it was suggested to use what is called a therapeutic or compassionate fib to get her to the appointment. It pains me to fib to her but it’s in her best interest. I know that she will be extremely upset with me for doing this, but this is one time where I’m hoping her memory will fail and she will forget about it soon. Wish me luck!

M1

While of course you would not lie to her if she were in her right mind, she is not, and unfortunately you will find yourself continually in this position as she progresses. We say here that you learn to give the answer that will bring the most comfort, and in the context of dementia that is all that matters. Read about anosognosia: it is a common feature of the disease that it not denial, it is true inability to perceive the deficits. In all likelihood she thinks she's fine. I do indeed wish you luck.

MarLee92

https://alzconnected.org/discussion/67998/undiagnosed-parent

I just wanted to add to what the others said, by saying my MIL's primary doctor was not helpful at all in getting my MIL diagnosed. PHP's spend 10-15 minutes with them, and almost anyone will tell you that someone with early dementia/Alz can fool anyone for that long. I sent a message to MIL doctor and demanded that she refer her to a neurologist. MIL was not thrilled, but when we told her we wanted her with us for as long as possible and could she do this for us and her grandchildren - she had a hard time saying no to that. My MIL was also paying bills and driving apparently without issue. Until she came up missing and had driven about 10 minutes from home and didn't know where she was. We wouldn't have known about this either, except my husband had called her and she answered her cell and couldn't tell him where she was. We then noticed credits on her monthly bills - she was paying twice because she didn't remember paying the first time. Trust your instincts something is wrong and become an advocate for your mom. Your dad probably is scared and doesn't know how to help her. Good luck.

laurent1061

New to forum, son of a memory issues father. How do I get his doctor to officially declare he cannot handle his financial decisions? I have a DPOA, but cannot act on the Trust as a succesor trustee until he is removed due to incapable.

M1

Welcome to the forum Laurent. Do you have Hippa privileges with your dad's docs? That will make it easier but even if you don, you can contact the doctor and tell them what you need, even if they can't answer you back. They may be perfectly willing to provide a letter.

Another strategy frequently used here to get reluctant loved ones to the doctors office is to tell them that it is required by Medicare or he'll lose his insurance. You would need to go with him of course and would still need to tell the office your concerns ahead of time, preferably in writing.