Grandma refuses to see psychiatrist

BiedneysGrandchild

I'm primary caretaker to my Grammie, who has multi-infarct vascular dementia. She's still in early stages and very present, but has recently developed compulsive behaviors, heightened anxiety, and obsessive thinking. I'm not sure if she has anosognosia or is uncomfortable with acknowledging these issues, but she refuses to listen to family (including both my parents who are MDs) about observations or concerns and gets angry and interrupts if I try to bring it up to doctors. I'm trying not to push too far because it only upset her but it's starting to affect her sleep, confusion, and quality of life and hasn't slowed in progression. Does anyone have any advice on how to encourage her to think about talking to a geriatric psychiatrist or even just her primary care doc?

LaurenB

Hmm, that's tough. It can be tough to get LO to a doctor if they aren't interested or don't have an understanding. Would LO be willing to go to the doctor with you present and you give the doctor the heads up on the situation in a letter before hand so that the doctor can play along and speak with you while observing your LO? This way the doctor would know what's going on and can be causal with LO rather than directly confrontational.

Emily 123

Hi BiedneysGrandchild. Welcome.

You note ''she refuses to listen to family (including both my parents who are MDs) about observations or concerns''

Meet her in her reality. The disease prevents her from meeting your family in theirs.

Don't argue with a broken brain, expect her to know there's an issue, or have the capacity to handle her own affairs.

You are spot on about the anosognosia. She doesn't think there's an issue. No-one will convince her. But she will retain the negative emotions around these discussions. That's not good because it will ramp up her suspicion and anger. Pivot to a goal of keeping her calm. If that means agreeing with her statements that don't make sense, that's ok. If she's calm, you will be able to work with her more easily. https://youtu.be/ncKhXQtnyfI

Don't be up front about the reason for the doctor's visit. Many here have had success scheduling an office visit by telling their loved one it's a drop in visit for something like ''a new insurance requirement'', or having the loved one with them when they run in to the provider for''a quick blood pressure check''. In the background, the provider will be aware of the real reason for the visit. Given that both your parent's are MD's and that your grandmother seems to already have a diagnosis, maybe her provider can prescribe based on a discussion with family? Grammie's not able to be a good judge of what's going on.

5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0.

At this point she's not able to make good decisions consistently and needs more structure. Most posters here will agree that putting structure in place can be tricky at first. For me, it was these things:

*As a society we very much cherish independence, and are reluctant to take it away. Dementia is stealthy, and can spare the person's social skills for a while, so it seems like they're doing ok, when the reality is that they are working very hard to navigate their day as their abilities slip.

*It's very hard to flip the parent/child dynamic.

*People with dementia can have good and bad days. On good days they may be aware and frustrated with the losses the disease is causing, and take it out on the caregivers (especially if they think they are being patronized, when the caregiver is actually operating in 'bad day' mode).

*We very much want our loved one's approval for plans, so we try to include them even though they have lost the capacity to evaluate the need for changes.

*The anosognosia often means we have to use fiblets to work around the disease. For example the loved one thinks they can still drive. As caregivers, we see that they are unsafe and incapacitate or remove the car and tell them it's at the shop being fixed. It still feels awkward to fib.

See if the videos and article below help, & please feel free to share. They helped me. This can be a long journey. Good luck! Sorry you're here.

https://www.youtube.com/watch?v=rO50pVUOlbE

Even though this is more Alzheimer's focused, it's an excellent article:https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

Teepa Snow series:

https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

BiedneysGrandchild

Thank you, LaurenB and Emily123! These responses are both so, so helpful and I really appreciate the resources. This has been quite the learning process for all of us and while I hate to think that anyone should suffer with a disease like this, I'm also grateful that none of us are alone. One issue I'm running into is what I can discuss legally without her since her primary care office has only seen her once without fully observing what's going on and when I called they said I couldn't discuss it without her. My parents do have medical and legal POA; they've been hesitant to exercise it out of respect for her autonomy (and I think some fear of her anger or hurt) but have acknowledged the growing need so that may be the next course of action. Not sure how hard I should insist to the doc that we have a discussion without her before that point. I was able to get her to the doctor without mentioning that it was related to concerns with her mental health but as soon as I implied something she shut it down. The doc respected that in the moment, which was great, but unfortunate that the office isn't comfortable addressing it privately.

harshedbuzz

@BiedneysGrandchild

Hi and welcome. I am sorry for your to be here, but pleased you found this place. You've already gotten some excellent advice. The Understanding the Dementia Experience @Emily 123 posted was the single best thing I read on the topic in terms of helping me have the empathy and patience to meet my dad in his reality.

I feel like part of this situation might be related to your parents' lives as physicians. There's an old saw that most MDs are pretty clueless about the impact of dementia which results in caregivers venting.

The other piece is that it's devilishly difficult, as an adult child, to get all up in one's parent's business and force health and safety issues. IME, this seems to be especially tough in families from cultures where the elders are revered in ways the elderly are not by most Americans.

(Anecdote-- when my dad had dementia, I was commiserating with a man I know through a volunteer gig who shared that his wife was staying with her parents in another state because "MIL has memory issues and can't run the household anymore and FIL is abusive in his frustration believing if he forced her, she'd rise to the challenge". FTR, FIL was a recently retired neurologist. In this case, MIL and FIL came to this country as young adults from a different culture.)

From your description of Grammie's anxiety driven behavior, it sounds like she would be a good candidate for a trial of an SSRI medication like Zoloft or Prozac. Does she have a PCP who would be willing to prescribe? If the PCP sees her regularly for other things, they may be willing to write the prescription. If you'd rather a geriatric psychiatrist, could you get her there using a fiblet that it's your appointment and you need her to come with you for moral support?

My dad had been told he had mixed dementia by his neurologist and could no longer drive or handle finances. He did not accept this. He was unaware of the range of losses he'd suffered by the middle stages and believed his memory loss was "part of the normal process of aging". I got him to the geripsych by presenting the appointment as a second opinion because I wanted to make sure he was getting the best care. He hated his neurology team and those appointments, but loved going to see his geripsych who was a warm and engaging character.

Good luck.

HB

Emily 123

Gotcha, so... Since your parents aren't activating the POA and you're not on the HIPAA (information sharing) forms you're a bit stuck.

You say she's had one visit--did she perhaps come to your family with a diagnosis from somewhere else, and you have just established care in your hometown?

What might work best is for your parents to be added to your grandmother’s HIPAA forms at her physician’s office. One of them should go with her to do this since they are POA’s. If you are assuming care of her, then discuss with your parents if you should be added to the form as well.

This can be as simple as them explaining to your grandmother that, if something urgent came up, the forms would allow the doctor to discuss things with them so that they could take care of her the way she would want. Once that's done they can have a discussion offline with the PCP about the behaviors. Keep it simple so she can understand, and everyone should steer clear of bringing any behavioral issues up with her.

You may have success by trying a two pronged approach: Reducing her stressors by meeting her in her reality AND having a sit-down with Mom and Dad about your concerns. I will echo harshedbuzz in that most people are unaware how difficult it is for someone with dementia to navigate all the multi-step things we do to get through our day, and the amount of support required to help someone do that.

If a goal is keeping Grammie calm, supporting the caregiver is critical. Now that your family is launched on this journey, you all may want to clarify everyone's roles in this. What will each person handle? Things will crop up, and supporting each other and keeping open lines of communication (as well as boundaries!) is key.

bpaigeh

Hello,
I am the primary caregiver for my grandmother but I do have a paid caregiver come in twice a week to help me. What has worked for us is to have the other caregiver take her to her appointments. She will fight me tooth and nail, but will listen to the non family caregiver. We have also done a lot of tele-health when possible. My grandmother is much more open to talking to the doctors when she can do so at home. I do have the right to make appointments on her behalf and sometimes will tell her we are seeing a “nurse” because doctors make her uncomfortable, regardless of the truth. I have had a lot of luck with pulling nurses aside and explaining the situation.
Good luck. It is not easy.

mommyandme (m&m)

https://alzconnected.org/discussion/comment/181094#Comment_181094

Hi Welcome to the forum and also for offering great advice!