New person, first post - Trying to be the rock

StarPilot

To say I'm frustrated would be an understatement - my dad was finally diagnosed with dementia/alzheimers along with anxiety, depression, and OCD/fixation. We could sort of see signs of something not being quite right with him a year or so ago and I had to push my mom to get testing done. The first specialist they were recommended to refused to do the test because he identified Spanish as his primary language (which it is) but hes been speaking English for over 30 years at this point - not perfectly but its been FINE. Even when the doctor said that he should be able to do the testing fine in English, the specialist refused. After MONTHS, we finally got another recommendation. Today we got the primary diagnoses from the primary care doctor and then my mom and dad are meeting with the specialist on the 30th to go over the results as well.

They are several states away and I have been pushing for them to move into a retirement community for about a year now - so that they can be closer, have help, so much mom can have a community again.

He goes back and forth between flat out REFUSING to move and having moments of lucidity when he notices something isn't right. My mom is having a hard time being patient with him because he gets very angry, paranoid, and can say very mean things.

For example, I went to visit them in Sept to go through all my things and help my mom get rid of other things. In the past two weeks, I've had to talk to him twice because he is convinced that I've stolen things of his which obviously isn't true. I speak to him matter of fact-ly and calmly because I know that's not him.

I have to constantly remind my mother that that's not the guy she married. That he's not well. I feel like I've given her resource after resource to get help, so she doesn't feel alone but it feels like it just falls on deaf ears - not because she's not open to it but because she just can't find the time somehow.

I have a 3 year old and a full time job so moving to them temporarily isn't an option for me. I feel like I'm at a loss because I don't know what I'm supposed to do. I feel guilty because part of me just wants it to progress to the point where he can't be combative and we can move him easier. That's just not my dad anymore. Am I a terrible person?

Victoriaredux

Hi starpilot - I’m glad you found this Forum, there are a lot of folks with experience on this road . This thread doesn’t get as many eyes on it , so feel free to post in the Caregiver or Parent sections if you want.

There is so much to learn and do to help your folks, and you are correct - being at a distance doesn’t help. And you aren’t a “terrible” person , everyone here wishes the disease hadn’t come knocking.

Your Mom may be in denial - or developing some issues of her own - when one parent is impacted the other may look a lot better but is slipping also- just slower. Or she may be more “old school” and want to keep things “private.”

In terms of what you can do to help , check if your parents have the legal tools in place for the next steps - DPOA, will or trust,healthcare proxies and directives etc. Seeing a certified elder law attorney in the state they will probably stay in is the best resource because the lawyer can explain medicaid[state variable] , how to structure finances for the surviving spouse [which sadly is the PWD not the spouse caregiver about 20 per cent of the time ] etc.

Do you have an idea how their finances are doing? Is your Mom handling the money now , if not that should be a goal to avoid him losing assets to a scammer, not paying bills etc .

If you haven’t read the book the 36 hour day is a good resource.

You said “He goes back and forth between flat out REFUSING to move and having moments of lucidity when he notices something isn't right.” That could a factor of two things - he may have anosognosia which is an inability to see the situation clearly- it is not denial. And that his brain can’t process things like it used to- so he reacts more with emotions than rational thought.

When your parents see the specialist have his behavioral issues addressed - maybe a letter to the Doctor ahead of time to avoid him getting upset- medications may be helpful. They may make him less “combative.” They can take a while to work and everyone reacts differently- but there can be solutions to make things easier for all now .

But for the future , you and your Mom will probably have to work around him rather than try to get his sign on or understanding of the changes that will need to be made. Keeping him calm and not involving him in complex decisions he is no longer capable of understanding.

tboard

https://alzconnected.org/discussion/70982/new-person-first-post-trying-to-be-the-rock

Having a spouse with dementia is very difficult. Your mom's life has been upended. If she/they had plans for the future chances are those plans are no more. She may have been a take charge kind of person but she isn't in charge anymore. Your dad's disease is in charge or maybe your dad was the person who took charge and now he can't. Their relationship has changed greatly. There is no easy way for your parents or for you as their child to navigate this disease. There is no right or wrong way to be a daughter.

H1235

Welcome. Your dad is not able to think clearly regarding his care. It is extremely difficult to make decisions against a LO s wishes. I think it may be even harder for your mom. He is her partner and she is used to making decisions together. It may take her some time to adjust. If everyone but your dad agrees that moving closer to you is the best plan, then that is what should be done. You can’t let someone with a damaged brain(sorry) make the decisions. I would consider telling him they are just coming for a visit, then set them up in a more suitable living situation. Or whatever excuse you can come up with to get him closer. He is going to eventually start asking about going home and will probably even get mad, but making him happy(even not mad) might not be an option. This is a lot on your mom. The fact that she can’t find the time to read through the material you have given her just goes to show she has way more on her plate than she can handle. I would also be looking into medication for the anger and paranoia. It can take awhile to build the dose up and to even find the one that works best. I agree with others that legal things are very important at this stage. If your mom is named DPOA, make sure you are a backup. Driving is always a big issue. If he is still driving do you think he should be? This is probably a good question for his next appointment. Does his doctor have an online healthcare portal. Even if he doesn’t have it set up you could set it up. Then you would have some access to the doctors notes. Your could even send questions to the doctor to be addressed at the next appointment (driving, medication). Is your mom going to be able to give you accurate information from the appointment? So much to think about. I hope there is something here you find useful. Good luck.

StarPilot

Legal stuff is set up and I told my mom she needs to switch me to her primary back up vs him. She was supposed to go yesterday but missed the appointment so will be going on Monday or Tuesday.

No one thinks he should drive anymore and my mom is doing most of the driving now.

For the appointment with the specialist, I'm going to ask my mom if she can call and put me on speaker so I can hear everything.

I specifically told her she needs to ask about meds for anger and paranoia. I believe his primary just put him on an anti-depressant to start but I don't honestly know if that's enough. Hopefully the specialist will provide a more cut and dry/direct report.