Cared For Grandparents and Now Mother

barkerl97

Hello! I helped my mom care for her parents as they suffered with dementia and Alzheimer's for several years before they passed. It was physically, mentally and emotionally difficult on both of us and traumatizing for my mom especially. Now, 4ish years since her dad passed, my 60 y/o mom is showing her own signs. She's still very much in the very earliest of stages, but we floundered with ignorance and isolation while we cared for her parents and I don't want to be unprepared to care for her. She's uninsured and doesn't believe in therapy and I'm just feeling a little paralyzed as I take these first steps to finding her medical care in an attempt to slow the process and ensure she's as comfortable as she can be before it gets as bad as it did for her parents. Any advice is surely welcome, I don't want repeat our "we can do this ourselves!" mentality from before, I need help.

H1235

The most important thing you can do is take care of legal matters. See an elder law attorney. She needs a will, a living will and most importantly a DPOA. Don’t put this off. As far as treatment, I’m sorry, but don’t get your hopes up. She should definitely get a proper diagnosis and they may prescribe something in the hopes that maybe they prolong the early stages. This site is a great source of information and good place to vent on bad days. I think educating yourself about dementia is very important. I will attach some resources I would like to have had in the beginning.

This is a staging tool.

DBAT.pdf

H1235

It’s not letting me edit.

This is a great article.

understanding-the-dementia-experience.pdf

This covers what you need to know as a DPOA. I would suggest keeping a careful eye on finances. This is often on of the first areas people start seeing symptoms and unfortunately dementia is very expensive.

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

Welcome and I hope you find these helpful.

SDianeL

read the book “The 36 Hour Day” which helped me. Search online for dementia caregiving videos. Tam Cummings has some good ones. Once you get your legal affairs in order, decide where your Mom will live and who will care for her. Start looking into memory care facilities, tour some, choose one and get her on a waiting list. There is no way to know how it will progress. Doctors are reluctant to talk about that for that reason. Come here often for info and support or to vent. We understand.

harshedbuzz

@barkerl97

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

Has your mom been working? If so, you will want to explore long term disability/SSDI which could provide some income and qualify her for Medicare earlier than 65. A CELA can help with this as well.

HB

barkerl97

https://alzconnected.org/discussion/comment/249953#Comment_249953

Hello! Yes she's working and likely will until I "force" here to retire. Her employer is an independent attorney near the end of his own life and I worry that she wont end up qualifying for any government aid due to the nature of her employment

barkerl97

https://alzconnected.org/discussion/comment/249928#Comment_249928

Hello! I'll definitely give that a read, thanks for the recommendation! I will never be able to afford to move her to a facility and she has no savings of her own. My end goal/plan is to move in with her myself once she needs more day to day help.

barkerl97

https://alzconnected.org/discussion/comment/249906#Comment_249906

Hello! Thanks for the DPOA info, i was super lost on that. Her finances are already/have always been in shambles and I will be taking on all of her dept when she passes, so its good to have some resources in that regard. She and I are going to have a long conversation this weekend, hopefully I can get her to work on a proper will and let me take her to the doctor to get a proper diagnosis. I don't have high hopes in terms of medication, but am hoping to alleviate the anxiety and aggravation that her parents showed before her. Thank you so much for the info

harshedbuzz

@barkerl97

The more you put out here, the more I think you need to see a CELA. Like yesterday.

A Certified Elder Law Attorney can help you avoid taking on her debt and can probably sort out what sort of benefits to which your mom is/will be entitled. She's not working under the table or something is she? Does she have any retirement benefits through this position? Continuing to work and being fired for cause could make it so she loses these things.

Does she own a home? If she does, there are loopholes that may allow you to keep it if you move in with her and provide care for 2 years. Either way, there are steps that can be taken to qualify her for Medicaid to cover care in a facility that you could explore with an elder law specialist.

HB

barkerl97

https://alzconnected.org/discussion/comment/249973#Comment_249973

She's not working under the table or anything like that, her employer is just an independent. She doesn't get insurance or retirement plans through him.

She co-owns? The home she lives alone in with her sister. It belonged to their parents before they passed and was left to both of them, though my mom has lived in/maintained/paid for it for 8 years now by herself. It's a whole other mess that involves a ton of family drama with the sister and her husband unfortunately.

I've been looking into CELA's in my area and have scheduled some consultations with a few, thanks to the advice y'all have already given me.

I really really appreciate all this information, I didn't know what to expect from posting here, but I'm so glad I did.

H1235

Many with dementia have anosognosia and are unable to recognize their symptoms or limitations. This can cause a lot of anger, frustration and resentment when these symptoms are pointed out to them. If this sounds familiar, I would recommend you consider a different approach than a heart to heart, for both the doctor and the lawyer. What might work better is to simply suggest she is getting older and it’s a good idea to get legal matters handled “just in case”. As far as the doctor, bring her in for “her yearly checkup” then give the doctor a list of your concerns before the appointment. A patient portal works really well if it’s something your mom won’t be looking at. The idea is to avoid bringing up things in front of your mom that will upset her or make her angry. This staging tool might be helpful if you haven’t seen it before.

DBAT.pdf