Early Onset- Don't know where to begin

jnmiller324

Hi- This is my first time posting. My mom is 62 and was diagnosed with early onset in November. I am her only child & my parents were divorced & he's now deceased. Things really came to a head with Covid where she lost her job at the company she worked at for 30 years, but they did offer her an early retirement package. My family didn't tell me about this for about 4 months and her insurance/income ended in December 2020. I only had about 3 months to secure her health insurance and apply for SS disability, we she started receiving in March. We also secured POA for me in January. We unknowingly applied for Medicaid & she was approved. That came from when I bought insurance through the marketplace. I kept calling DHHS to figure out what the paperwork was, but no one ever returned my calls. I only learned it was Medicaid last month. 

She lives alone (Muskegon, MI), but my aunts & uncle can get to her in 5 minutes. I live on the other side of the state and am managing things long distance. Someone checks on her daily, but she is getting angry with them. Her condition seems to be deteriorating rapidly. She is now forgetting to shower and is not changing her clothes. She does not want to leave her home, but also doesn't want anyone in her home. 

She has a pension & 401k that she has not accessed yet. I want to secure her assets, but am worried now that she qualifies for Medicaid. I predict she will need a home probably within the next year. I just don't know if or what I can do. What else do I need to do to help plan for her future? It's all so overwhelming. 

Fairyland

Hi I am new to this situation too though my mum is 82 so no early onset.  So my commiserations and condolences on what you are going through I’ve had to leave my home in another country to see what’s going on with mum, including abandoning my daughter who has just been sadly rejected from university so needs me there! Luckily her dad is there for her. Thank heavens I have come mum has already been scammed out of thousands and was so anxious and impaired. My aunt also in her 80s couldn’t cope with mums probables on top of her own family. Living in the house has shown what hours of phone calls never revealed- a big mess!

I  just wanted t tell you I accessed some free advice and help yesterday through my state (Iowa) and I recommend you look up acl.gov to see what there is in your state. I took all the paperwork and talked to a volunteer for an hour, it was so helpful! I feel a lot better now. 

It seems to be a blessing to be an only child at least in many ways, so many threads are about sibling disputes and lack of help. Unfortunately- I would hope that some brothers and sisters make a good team! Looking at my two daughters - uh oh! At least I can control the situation somewhat.

abc123

Dear jn, hi and welcome. I’m very glad you found us. We offer each other a great deal of support. Many wise and experienced folks here who can share good ideas and suggestions. 

From what I understand about EO is that it will sometimes progress much faster than the other types. You are very wise to make plans now. I highly suggest seeing an elder care attorney. They specialize in helping people protect assets, plan accordingly and can offer you excellent guidance. I wish you the best. Good luck.

towhee

Hi jn, welcome to the boards. I am sorry that your mother seems to be progressing so fast. You have done well getting her on Disability so quickly. I'll try to give you some partial, general, answers to some of your questions and a little advice. 

First, some resources. Pick up a book called the 36 hour day. It is full of practical information. Find for free online an article called "understanding the dementia experience", it will help you to understand what your mother is going through.

You say you have a DPOA. Do you or someone else also have a healthcare power of Attorney? If not, you need to get that. Your relatives who live close (if they don't have the HCPOA) need a HIPPA release. A HIPPA release allows you to discuss a persons medical care with their physicians, but it does not give you authority to make any decisions. You need to think about advance directives such as DNR, etc. 

Do not at this time put any of your mothers assets in anyone elses name, give away any money or property or transfer anything in any way, or take any money out of retirement accounts or change retirement accounts. Hope that no assets were given away or transferred in the last few years.

You need to see an elder law attorney who has a significant amount of their practice in elder law. The recommendation here is usually to see a CELA (certified elder law attorney) directory at nelf.org, but some areas don't have a CELA and they can be expensive. You need a consultation and some questions answered. Your lawyer needs to be familiar with long term care medicaid and also medicaid as medical insurance.  

Long posts tend to be lost here so I am going to post this and continue it in another post.

harshedbuzz

Hi jn-

Welcome from a fellow only.

This is a difficult situation. EOAD does, for many, progress quickly. It is also often diagnosed later than it might be in someone 20 years older simply because it's not being looked for.

You say she "may need placement" within the year; I would venture she shouldn't be living alone now. The drop in hygiene/changing clothes is an indication that's she's hovering around stage 5-6 which correlates with a "mental age" of 4-8 which means she needs 24/7 care- down the road 5 minutes away is relying on her identifying that there's a problem and figuring out who to call for help and actually following through. 

Stages of Dementia Dr. Tam Cummings

Measure and Manage the course of AD using The Functional Assessment Staging Test (FAST) (mciscreen.com)

In you shoes, I would be looking to move her to a nice memory care community near where you live.

HB

Cobalt

I may be an "oldie" here, both agewise and longevity on this forum, ha ha!  After a year, I learned a thing or three.  My son has Early Onset at age 41, soon to be 42.  After the shock at first, he's just like anyone with a form of Alzheimer's or dementia.  Except in a young body.  And he prefers Metallica and watching Rick and Mortie gross cartoon shows.

Actually many people could be diagnosed with "early" for Alzheimer's if someone is looking for the symptoms. From our experience, we started looking for the causes of his cognitive problems and behavior problems a year earlier before diagnosis.  IMHO by the time there is a "diagnosis" it is really obvious.  And for us, my son fairly rapidly became more and more a "classic" path of cognitive decline.  Soooooo, if YOU are noticing changes, watch to see how significantly the decline is.  Your mother may already be fairly along her path than others know.

I also started looking here in the forum for the EO part and you may find helpful information there as well as in this Caregivers Forum.

Best wishes and ask away anything.  This is a great place for people to ask simple and complex questions.

KillAlz

Hi
Yes this is very overwhelming I can totally validate that!

I am helping my father with alzheimers and have been for close to a year an a half and have done quite a bit.

Good move getting POA, I did the same thing with my Dad early on being I saw his condition rapidly declining and realized he will become unable to make rational decisions and also had suggestions to do this and I did and thank God I did this because it has helped quite a bit.
 
 Does your Mom have Medicare?

I tried to get my Dad Medical (CA version of Medicaid) and he was denied and tried what is called covered California and also was denied.
Medical - His income was to high, their cap is like 17,000 a year.
Covered CA - Disqualified because he has Medicare

I think we help illegal aliens better than our own citizens..

What kind of POA do you have?

I have 3 different ones, one is 3rd party release of records/information, another is for medical and another is Durable POA which covers everything including the previous two I just mentioned.
 
If you have Durable or release of records POA you can deal with your mothers finances yourself, you just need to contact them and let them know you are the POA for your mother and ask where you can send them a copy of your POA.
Once they receive it and process it or whatever they do you will have full access to her accounts.
Some places will play hard ball with you but what you have is a 100% legal document and if they will not work with you then get legal help and they will be forced to work with you.

Most places will not give you a hard time, they know this is a legal document and they have to cooperate.

I was able to take control of all my Dads retirement accounts and I have full access to his bank account which is how I pay his bills which all are now sent to me including his bank statements.

If you do not have these POA's I highly suggest you get them because once your Mom is unable to understand things it will be very difficult to get someone to approve a POA for you.

POA's have a lot of power for you to take care of a loved ones business otherwise your hands are tied behind you and once they become unable to deal with things then how are you going to help them?
It will be very difficult to unable to until they die and whoever is executor of the trust/will will be the one to deal with everything after they have passed.

Also any POA you have will expire upon the persons death as well.

However you can do a lot of things while they are alive with your POA as long as you have the ones that cover everything, the three I mentioned have covered everything so far for me.

I believe the Durable POA covers everything legally however some places like more specific ones or the Durable and the one that also relates to the situation, this has been my experience.
I like to cover as many bases as I can just incase and it has worked out well so far.

I wish you all the luck, I know it is hard.

Take care....