Caring for mom with a/s of dementia

ffrankc · July 19

my mom clearly has signs of dementia. Have taken her to her Kaiser PCP to confirm and get HELP as I have no idea on what I need to do. Unfortunately after four visits, still no diagnosis or referrals or assistance/advice except deal with symptoms as they come! It’s really hard dealing with this. I want the best for her but finding myself really suffering with all options being bad!
Anyone have advice and or contact info? I’m new to all this and I prefer keeping her in my home. Any caregiver references for a sitter? She is self sufficient for 99% of stuff so just someone to hangout with her two to three days a wk would be great. Any references?

michelemabelle · July 19

Hello!

My parents rely on Kaiser and they live in the Mid-Atlantic area (an hour from DC) and we were able to get my mom assessed by the Kaiser Memory Care Program in our area. Her primary care doctor referred her and she went through a fairly robust assessment with an internist/geriatrician MD who works in the Memory Care Program and my dad and I were also asked for feedback. Maybe Kaiser has a program like this in your area if you are not in the Mid-Atlantic area.

As for advice, I rely a lot on an Alzheimer’s support group (the Alzheimer’s Assn. offers an online directory for these groups as well as a lot of other great resources) and I read books like The 36 Hour Day and I find other resources through these and other connections.

All the best to you!

H1235 · July 19

Welcome. If they have ruled out treatable causes, there is probably not much more that can be done. I can understand wanting an actual diagnosis. My mom was referred to a neurologist who did extensive questioning. She also had an MRI. I think I would be frustrated without a specific diagnosis as well. Have legal matters been addressed. If not I would make this a priority. You will definitely want a DPOA and a medical POA. A will and a living will would also be a good idea. Your local commission on aging would probably be a good resource. They can give you phone numbers for local resources that might be available. I am going to attach a few resources that I have found helpful. I have also found this site very helpful. Sometimes you may just need to vent, or you find yourself with a difficult situation. Caregivers here have seen it all and are very helpful.

This is a great staging tool

DBAT.pdf

This is an article titled Understanding the Dementia Experience, it’s very good.

understanding-the-dementia-experience.pdf

This is a site that will help how to be a DPOA. This is very important, especially if there is any chance she will need to apply for Medicaid at some point. Sorry you may need to cut and paste this one.

https://www.consumerfinance.gov/consumer-tools/managing-someone-elses-money/

harshedbuzz · July 20

@michelemabelle

You've already gotten some excellent advice.

I'm a little confused. Has your mom had any kind of testing? Normally a dementia workup is one of elimination of other, potentially treatable conditions with similar symptoms. Once things like vitamin or hormone deficiencies or brain lesions are ruled out, there's not much in the way of treatment aside from supportive and later custodial care.

There are some oral medications that some doctors do prescribe. These often come with significant side effects and don't really do anything to stop or slow the progression of the disease, but some families report their LO functions better on these meds. There are newer infusions for those who are specifically diagnosed with Alzheimer's confirmed by a special PET scan or lumbar puncture that are supposed to maintain a PWD in an earlier stage longer. These are infusion medications (every 2-weeks) and $$$. They come with a lot of caveats— they require regular testing to

look for side effects which can be significant

harshedbuzz · July 20

SDianeL · July 21

I would ask for a referral to a Neurologist who should order an MRI. You may still not get a diagnosis except MCI. My DH diagnosis was white matter disease probably vascular dementia. There is a 4 hour test done by a Neuro-Psychologist that my DH went through but I don’t think I would do that again. Although after that test she called and said he should no longer be driving. She said he had visuospatial difficulties. if your Mom has dementia she should no longer be alone in my opinion. She could start a fire and not know what to do. As the disease progresses she will need full time care. 24/7 for her safety. Read the book “The 36 Hour Day” which helped me after my DH diagnosis. This online community helped me more than any doctor. Come here often for info and support.

Caring for mom with a/s of dementia

Comments

Commonly Used Abbreviations

Community Guidelines

Categories