Questions to be asking

akb4life

I currently live out of state from my LO. They were recently diagnosed with EOA and from my research I believe that they are in early stage. I call every few days to check in on them. What are some questions that I might want to ask that can help me know how they are progressing through EOA? I know there are limitations since I am not there to witness 1st hand, but I do want to stay privvy to their progress. Any help would be appreciated.

H1235

If your LO was recently diagnosed, I feel I should ask about durable power of attorney and other legal matters. These are important and can’t wait. I suggest you ask your LO if you could have online access to their bank account. Not take over just the ability to see. By looking at the account you can tell if bills are being handled and make sure they are not making large unexplained withdrawals. People with dementia often suffer from anosognosia. They are unaware of their symptoms or limitations. This makes things tricky from a distance, because they are probably always going to tell you they are doing fine. Keep in mind that problems they experience are probably going to more than just memory. Logical thinking and problem solving is often a problem. I found with my mom paying bills and managing her medication were the first problems we noticed. That brings me back to monitoring the checking account online. As far as specific questions you could ask? I don’t know. How about tell me about your day. Maybe just listen for things that don’t sound right or off and ask questions. Good luck.

harshedbuzz

Hi and welcome.

Do you hold POA for this individual or are you the only next-of-kin? Do they live alone or is there someone living with them or looped into the situation nearby?

You really can't get a firm sense of how someone is functioning over the phone. Full stop. It's best to have eyes-on, ideally 24/7 for several days to see how they are getting on. If there's someone living with them or otherwise looped in and attending appointments, they would be who to ask if you can't travel. Another option would be to hire a private geriatric care manager to be your eyes and ears although in early stages this might cause friction and distrust.

Many PWD have anosognosia which means they don't have a full sense of how impaired they are by dementia. Even if they admit to a poor memory, they usually fail to recognize the impact of their poor executive function and reasoning skills on their safety. They tend to be unreliable reporters as well. Sometimes they will conflate stories and since you may not know the reality of what they're saying it might make sense to you. Or they may think they're handling their IADLs because that was their custom when, in fact, bills aren't getting paid.

It's also very likely, asking how they're doing might anger them as many can be quite paranoid about others taking away their independence if the sense any weakness. Unless you have always called every few days, you'll likely raise suspicion.

Before my dad was diagnosed, I checked in by phone a few times a week as was my custom. I'm in PA while they split the year between FL and MD. During their time in MD, I came to visit monthly for a weekend to check on them and made a trip to FL most winters. I suspected dementia in my dad, but mom fought me on getting him evaluated for nearly a decade until things went horribly sideways. Mom started feeling poorly around the beginning of February which we discussed once or twice. By the 5th, mom wasn't answering her phone, so I called dad. We'd have a nice chat and he might tell me she was napping, or shopping at Publix or at the pool with her friends which was absolutely plausible. Then a couple days went by where neither answered, so I called the local police for a well-check. They called back to say dad had answered the door and seemed fine. He told them he hadn't heard the phone, and that mom was out shopping. I talked to him a few more times and he seemed to be mad at mom telling me she wanted to divorce him. Sadly, this too was plausible. The next night I got a phone call from the local hospital. Mom has been admitted a few days before with severe autoimmune hepatitis and staff were concerned about dad's cognition, so they tracked me down via her PCP's that listed me as emergency contact.

I truly believed I was doing my due diligence as next of kin with mom as his safety net. It wasn't safe enough. I moved them near me.

HB