A long road ahead…

Alison.37 · January 28

I just joined this discussion group. I had a difficult night with my mom. It started five years ago when I begged my mom to see a neurologist. After reading the report from the neurologist, and hearing what I had told him from my experiences with her, my mom hand wrote a three page letter firing the neurologist because “he doesn’t know what he’s talking about.” She refused to show me the full diagnosis or her MRI, and didn’t talk to me for three months. we eventually moved on from it. She refuses to accept any discussions about dementia or Alzheimer’s. Early intervention is now gone because that was five years ago and it’s just gotten worse and worse. She now repeats stories and questions multiple times within an hour. My dad has passed away and now she has a new boyfriend. He is extremely arrogant and annoying. I believe he is on the spectrum with Aspergers. My dad would’ve hated him. He was so kind and humble. None of her friends like this new boyfriend. I am her main caregiver and we have always been close. But now she is getting defensive and her personality is changing being very bossy. She intentionally won’t do things if I suggest them. I have all of her bills set up for online payments. She can barely drive just within about three blocks where she lives or she gets disoriented. I have spoken with her counselor, and we have the same GP doctor. They can’t disclose much because she never gave permission and now she’s definitely digging in her heels refusing to share. when you see my mom for a short amount of time she puts on a show and tricks people because she is a hot ticket and can trick everyone for ten minutes. I’m not sure what to do to get her doctor to truly understand how much she is struggling. She can still draw a clock and remember the three words for a test. But like I said before, if you stay with her for an hour, she will tell you the same story and ask you the same questions multiple times. her friends all see it as well, but have not really done anything. So my mom thinks I’m the only one just “picking on her.” I’ve told her that I am her biggest fan and greatest advocate, who wants the best for her. She said that she doesn’t believe me. I know things are only going to get worse, not better. I’m losing my mom. I know I have a long road ahead of me. I’m looking for advice. What do I do?

SusanB-dil · January 28

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

She has anosognosia. This is not denial, but rather it is the concept that absolutely nothing is wrong.

If you do not have DPOA nor HIPAA accesses, you may have to go for guardianship. Do check with a CLEC lawyer (a lawyer specializing in elder law).

Agree - she should not be driving, as it is not safe for her nor anyone around her. Should something happen, insurance may not even pay. And she is showtiming, which means she is able to put up a front for a period of time that might seem like all is well. If you could take away the keys ('they're lost'), that would help, but I understand if boyfriend might get in the way of that.

Without HIPAA, the doctor cannot discuss her situation with you, however - you can tell her doctor all that is going on - via a note or a phone call. They just are not able to reply back.

It sounds like you have realistic expectations and that you are trying. I'm sorry you are dealing with 'this' and the unhelpful boyfriend.

Merla · January 28

I was in a similar situation with different details with my parent. My parents personality changed with the disease. First she was more difficult during the mild stages and then became pleasant and go with the flow in the moderate stage. I was able to get her help during the start of the moderate stage because her whole way of being was different. It was impossible to help her during the early stages because she was so hostile to me. It took over two years to get her help and I couldn't do much more than watch it unfold for two years from a distance as I lived states away.

My approach was to try to build our relationship so I would have more influence. I also talked with her close friends and heard their perspective and they tried to talk with her about their concerns.

Like your mom my mom had a boyfriend who wasn't helping to address her situation. It's almost a gaurantee that your moms boyfriend will drop her when your mom becomes too needy and doesn't serve the purpose of companionship. It worked for me to swoop in at this point in time.

Also getting her legal paperwork with durable POA is essential. Unfortunately I couldn't get this done for quite a while.

Good luck. It's a hard process.

Alison.37 · January 28

https://alzconnected.org/discussion/comment/235151#Comment_235151

Thank you for the kind words and I appreciate you informing me about “anosognosia”. I had never heard of that and it really does sound like her. The two of us have the same GP so that is beneficial when I go to the doctor. I usually take a few minutes of each appointment to just tell her what’s going on with my mom from my world. She says that unless something severe happens that I/she can’t do anything. That means, unless she starts a fire, causes a wreck, gets lost or something along those lines, that she can’t step in. however I was just informed by someone else that if a doctor or a family member knows that a person has Alzheimer’s/dementia concerns and has not stopped them from driving and they get into an accident, then the family and doctor can be held liable. Has anyone else heard of this?

Alison.37 · January 28

https://alzconnected.org/discussion/comment/235160#Comment_235160

Thank you for the message and the support. my mom’s friends are finally to the point where they are willing to talk to her. I spoke with them about it today. I also spoke to our financial attorney who did the will and the people up at the bank to let them know what’s going on. I don’t know what to do about her boyfriend. I was originally very grateful for him because he got my mom out of a bad depression after my dad died. I hope he slinks away as she starts getting worse as you mentioned. Most people talk about trying to keep their parent out of assisted living facilities for as long as possible because of the horror stories. Does anyone have any positive experiences of their parents doing better once leaving their home? My mom used to be very social, even head of the social committee at her 55+ community. She used to go to fitness classes. now she stays up until 2 AM and sleeps until noon every day and barely leaves the house. I’ve tried signing her up for different classes and offering to go with her, but with no luck. I almost feel that going to an assisted living might be good for her and she could retell her stories over and over to new people. She’s a great storyteller! What is everyone’s thought on that?

SusanB-dil · January 28

If there is a formal diagnosis, the doctor can revoke driving privileges. If someone in the family holds the POA, then they might be held liable. If something does happen, not only could your mom or an innocent party be hurt, but also no, the insurance company may not pay, and mom could lose everything. That may depend on whose name the insurance is in. And yes, if there is a suit, the suing party could turn on anyone who knew. I am certainly no lawyer, so I don't know who could be held liable, but it sure would be bad.

There is assisted living, and there is memory care. Assisted living is more for those who can still pretty much manage ADLs on their own. (Activities of Daily Living - bathing, eating, taking meds, etc). Memory care has come a long way, but you still have to do diligence in finding a good one, or one that is a good fit.

H1235 · January 30

You might be able to go to her dmv website and report her as an unsafe driver. If there is a spot I would include that you think there may have been a dementia diagnosis. I don’t know if it would do any good, but it’s free and fairly easy to do. A lawyer really seems like your best option.

A long road ahead…

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