My Grandma has been diagnose but family won't accept it!

Doots3453

Hey there... long story short, my Grandma was diagnosed with dementia back in 2023 and my mom and aunts and uncles didn't share this information with anyone! Fast forward to today, my Grandma was in the hospital due to an UTI infection, and while I was there, the doctor mentioned her vascular dementia diagnosis and said he believed a lot of what was going on had to do with that and not the UTI... needless to say, I was baffled, as my mom never told me about the dementia diagnosis in the first place.
Back story - I have been volunteering, walking, researching for over 15 years because my other grandparent was diagnosed and passed away from Alzheimer's. So, I know that I am not an expert, but I feel like I know some information that would be very helpful.
When I reached out to my mom after my visit with my Grandma, I asked her about the vascular dementia and she said that she was diagnosed with "just dementia, no mention of vascular" back in 2023 but she hated going to the doctor visits and being told she failed the memory tests so they stopped bringing her. - I'm sorry, WHAT?!?!
I tried to explain that dementia is an umbrella term and that there are so many factors that play a part in a diagnosis. The more information I get periodically, and with a lot of hesitation from my family, the more I am finding that this diagnosis is pretty spot on, and was back in 2023 as well. **Sigh**
I am trying to put together information and get them to actually listen to what I have to say, but its not really working - I get blown off and laughed at. Does ANYONE have any suggestions or tips that will help me get through to them? I want the correct care for my grandma that will actually help her and not just be thrown into a situation where people won't understand what is going to be happening.
I need help! I don't know what to do.. its like they don't want to acknowledge what is happening, which I understand is hard but I don't understand the concept of pushing it aside.

Maru

It sounds like grandmother and also your mom and her siblings are in denial You really can do very little other than try to help them be informed. In the early stages there are meds that can slow down the rate of dementia. One thing that might be helpful is to send out a group message to your mom and her sibs about these medications. You can also talk to your grandmother and find out if she has assigned someone her Power of Attorney and her Medical Power of Attorney. Those need to be in place before she is in actual dementia. your hands are really tied, but you can be the loving grandchild and daughter. Be supportive as you can be under the circumstances.

H1235

Welcome. My mom has also been diagnosed with vascular dementia. We were told that while there is medication to slow progression for some types of dementia, there is nothing for vascular dementia other than a heart healthy diet and some cholesterol medication she was already on. I asked mom’s neurologist about the need for the follow up visits every 6 months and was told it was optional. She said that some people really like to have that regular check in. She does need a doctor that understands dementia and is able and willing to prescribe the medication necessary to treat the symptoms that come up. That may be a neurologist, a pcp, or a genetic psychologist. Where does your grandma live? Is she still living home alone or is she safe in a facility that offers an appropriate amount of care? Do you know if someone has a DPOA? This is important. If she is still living alone I would be concerned. Could you ask at the hospital to get their opinion on her living situation? Maybe your family would listen to a doctor. They may even be reluctant to release her if she is not going to receive the appropriate care. I had to insist my brother attend a doctors appointment so he could actually hear the doctor say she was not safe to be alone in the home. But he has conveniently forgotten this already and said we should have never moved her. Family can make things so difficult. I will attach a staging tool. It’s a nice check list. At each stage it gives a recommendation on care needs. Maybe this would help open your families eyes, but I wouldn’t get your hopes up. Some people just refuse to accept reality and prefer to keep their head buried in the sand.

DBAT.pdf

harshedbuzz

@Doots3453

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

First, let me say how sorry I am that you have already lost a grandparent to a form of dementia and find yourself back in that world. I am also sorry that you were kept out of the loop regrading this situation and treated like a child. That said, did you not notice changes in your DG before this hospitalization? My mom was in some next-level denial about dad's dementia before he was finally diagnosed, but it was blatantly obvious to me what was happening despite only seeing him a handful of times each year because of distance.

IME, neurology doesn't have much to offer once they have completed the comprehensive evaluation and ruled out treatable conditions that can mimic dementia. Aside from the newer injectables, for which your GM would not qualify (ES Alzheimer's only), there isn't much to offer at this point in time aside from some oral meds which aren't intended to slow progression and aren't universally effective or well-tolerated. For VD, the best practice is to continue treating the underlying CV condition with diet, statins and BP meds as appropriate.

My dad was seen by a top memory center in the country but once the diagnostics were done, routine follow-ups served only to upset him. They didn't give us any information that would have helped us provide better care. When dad developed behaviors, we sought out a geri psych whose appointments dad actually enjoyed and who prescribed a cocktail of meds to help dad with his anxiety and agitation. TBH, my friend who was going through the same with her mom, only ever took her elderly mom to her regular PCP which was easier on her and her mom. At the end of the day, this only ends one way.

It could be your GM swore her adult children to secrecy or that they didn't fell a need to burden their adult children who would not be called on to provide actual hands-on care.

The bigger piece here is whether they're managing the legal and safety issues appropriately. Do they have a DPOA for medical and financial purposes? Is GM safe living as and where she is now with a plan to increase oversight as needed?

HB