long distance - Mom refuses to be evaluated & Dad isn't taking action

DDdkd

My parents live in a different city, and we are deeply concerned about my mom’s health. She is 78 and has been showing signs of memory loss for the last couple of years, which are progressively worsening. She refuses to acknowledge the issue, won’t allow herself to be formally diagnosed, and has made my dad promise not to share her struggles with my sister and me. Her mother had dementia, and we suspect she fears the same diagnosis.
She retired just before COVID and was hoping my dad (he’s 80) would do the same. Now, she spends every weekday alone at home while my dad, who runs his own business, is at work. He knows he needs to sell his company but honestly, I don’t think he’s taken any steps to move forward with that decision. He knows that isolation is the worst thing for her and yet...he still goes to work.
Despite having access to a renowned dementia institute and us providing him with a ton of resources from the Alzheimer’s Association, progress is stalled because of my mom’s lack of consent to be evaluated and my dad’s reluctance to take decisive action.
We’ve tried to convince her to come and stay with us even for just a couple of days—offering to pick her up or take the train—but she refuses, providing vague excuses.
Her angry outbursts are becoming more frequent and severe,  and I fear that isolation is only making things worse. We've tried to be direct and have open conversations, but she shuts us out.
This feels like a ticking time bomb. We are worried that if things continue as they are, her mental health will worsen, leading to a potential crisis. I also don’t think they’ve set up any legal safeguards and when we ask about it, my dad brushes us off.
If anyone has advice on what we can do next, especially in terms of how to navigate this challenging situation, I’d really appreciate it. Feeling so incredibly helpless...

H1235

Welcome! So sorry you have to be here. She likely has anosognosia. It is the inability to recognize her own symptoms and limitations. It’s very common with dementia and is awful. Trying to reason with a person with dementia is useless. Fiblits are the way to go. Can you convince her she needs to see a doctor for insurance purposes? Is there some other reason you might be able to get her to the doctor ( sore back, check blood pressure, sore on foot…)? Have you spent much time in their house? I have heard many in this situation say it was much worse than they realized when they finally get a good look around. But honestly getting her to a safe environment might be your first priority. An appointment with a specialist can take 6-9 months where I am. You don’t want her living like this for months. If she is not able/ willing to sign legal paperwork then you are probably going to need to apply for guardianship eventually anyway. I would see a certified elder law attorney right away. I would suggest a long visit to their house (maybe spend the night), to really get a good understanding of the situation. Should you be questioning how your dad is doing? Are finances in order, is the house being kept clean, what are their meals like? Document everything that is concerning to share with the lawyer. If the situation is dire enough they may be able to do an emergency guardianship. You should probably have a plan for once you or a sibling have guardianship. Will she go to assisted living, memory care, or live with one of you? There can be a waiting list at facilities. Your parents are probably going to be mad and guardianship is going to seem extreme, but it is what is best. It doesn’t sound like your dad can be trusted to care for your mom even if he wasn’t working, his thinking seems off too. His devotion to doing what she wants is admirable, but misguided. I hope you can figure something out.

AmandaF

Hi - this sounds very similar to what happened to my parents. My mom was getting worse and worse and my dad was both in denial of her condition and totally overwhelmed by it. I’m so sorry, I know how stressful it is. Indeed, it’s probably pointless to try to convince your mom of anything. The disease won’t let her see reality. It’s a really awful aspect of it. If there’s any way to get your dad to have the conversation about designating a DPOA/getting all their legal paperwork in order, you should. If something happens to him, you want to be in a position to help your mom right away.

We only got my mom on medication (which helped a lot with some of the worst behaviors/mood stuff) after she fell and had to go to the hospital, and I insisted they keep her overnight so she could be seen by a neurologist. If you can talk your mom into an appt with her doctor, it helps if you can find a way to explain your concerns to them privately ahead of time. Good luck and I hope you figure something out before there’s a crisis.

harshedbuzz

@DDdkd

This sounds very like my parents. Mom was in denial initially about changes in dad that required an evaluation for over 5 years. Then she dithered over how to raise her concerns with a PCP to start the process for another 3. I raised concerns about changes in personality in 2005 and about considerable memory issues in 2008. He was finally diagnosed in 2016 after she nearly died with him as her advocate.

It's possible your dad is using work as an escape from this emerging crisis. Being home with a spouse who has dementia is difficult— isolating, boring, painful and irritating. My mom used to escape and spend all day at the pool or thrifting.

If you know the PCP, you could contact them confidentially ahead of an appointment sharing what your seeing and asking them to do a screening. If you aren't on the HIPAA forms, there will be no information in your direction, but it might get things on the table.

Otherwise, craft a plan B. That's what I eventually did. I found a memory center practice, a plan to move them back to this area, located an elder law attorney and waited for the shoe to drop. If things get to a point where you feel mom is being neglected or endangered by dad's behavior, you could pull the nuclear option of an anonymous call to APS. Sometimes men of a certain generation don't listen to their sons and especially their daughters.

HB