Struggling with parent who is avoiding confirming diagnosis.

Heidi Seffrood

Hello! I’m looking for advice: Some background: my maternal grandmother and her eight siblings all suffered with Alzheimer’s. My grandmother was diagnosed at the age of 74 and lived until she was 83. My 73 yo mom, who cared for my grandmother, is slipping fast. All the same behaviors, personality changes, etc. however, she refuses to get a medical diagnosis or talk about what is going on. We’re at a point where she’s getting lost when traveling to places she’s driven for years, putting things in places they have no business being (fake flowers in the freezer), forgetting people, and maybe the toughest part is
the personality changing. Any advice on how to proceed? Thank you in advance. 💜

harshedbuzz

@Heidi Seffrood

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

This is a common situation unfortunately and discussing it with her will only strengthen her resolve to avoid being diagnosed until a crisis arises.

Your next steps will depend on a number of things. Are you her next of kin or is there a spouse in the picture? If mom's married, the spouse would typically be the one to initiate the process of getting an evaluation. This would be the person you'd need to talk to. If the spouse is in denial or reluctant to address things, as my mom was, you may need a Plan B to activate when the crisis arrives.

Are you part of a sibling group with a similar sense of urgency around this? If that is the case, getting her to a PCP by whatever means possible is a next step. Many folks have to resort to a therapeutic lie (aka fiblet) to pull this off. Perhaps she needs an exam to stay on Medicare or to get a prescription refilled. Ahead of the appointment, you would reach out to the PCP with a list of your concerns and mom's family history and ask for a screening. You can do this via a patient portal or note. If she's not named you on her HIPAA waiver, the doc can't share with you, but they can listen to your concerns. Be sure to have a spare copy on the day of to discretely pass to the nurse when you're taken back just in case. You attend the appointment with her and position yourself behind her and in the doc's line of sight which will allow you to discretely confirm or deny her reporting.

Ideally, her doctor would order some blood tests and imaging to rule out other causes of similar symptoms that are potentially treatable. The doc would likely do a quick screening to get a sense of where things stand in terms of memory and cognition. From there, you would likely be referred to a neurologist for a full evaluation. Even if you fail at getting her to neurology, at least you will have ruled out or treated other causes. Both my parents had treatable issues surface in their bloodwork. In dad's case (Thiamine deficiency from alcohol use), earlier detection and treatment could have improved his outcome for some time until his Alzheimer's worsened. Mom had cognitive issues from Lyme disease which improved somewhat with treatment; we're still waiting to be seen by neurology.

If you are unsuccessful getting her seen, you could ask for a neurology consult if she should ever end up in the hospital/ER for another reason.

The driving is a concern. It doesn't sound like she should be. In addition to the memory issues that are causing her to get lost, dementia comes with changes in visual processing, decision making and personality that will impact her ability to drive.

Does mom have the legal paperwork in order in terms of POAs for health and financials? If not, that should be the next call. Sometimes it's helpful to refer to this as estate planning or bring her along when you are doing your own. Otherwise, you may need to go to court to obtain guardianship. This is costlier in terms of time and money, but if successful she would pay the legal fees involved. It's best to find an elder law attorney for this sort of work. www.nelf.org

What's her living situation? Is she alone? Are you local?, meaning are your visits short daytime outings? You might create a ruse to spend a couple of nights with her to get a truer sense of who she's functioning. Many PWD can showtime for short periods and appear more with-it than they are typically. Because my parents lived either a 4hr drive or 3hr flight away, I always stayed with them which gave me a much clearer sense of how impaired dad was. A dear friend who saw her mom for several hours daily, on the other hand, was shocked at mom's impairment when she finally moved her in while prepping the house for sale.

I'm sorry you're dealing with this. It's tough stuff.
HB

H1235

Welcome. I think HB gave you a lot of great advice. As far as the car goes, I would just make it not work anymore. “Take it in for repairs” and never bring it back. It doesn’t sound like her current living situation is safe for her. Will she move in with family or go to assisted living? There can be waiting lists to get in to some assisted livings. If you have DPOA you can sign the papers for assisted living. It’s so hard forcing things, taking things away and telling fiblits. I doubt that any amount of talking or arguing will convince her these things need to happen. She is probably going to get mad at you. I’ve heard here a lot that keeping our loved one safe comes first, unfortunately happy has to be considered secondary and is not always possible. I know you have a family history of dementia, so maybe you’re aware, but anosognosia is very common and one of the most difficult symptoms. It is the inability of a person with dementia to see or understand their symptoms and limitations. I hope you can figure something out.