Early onset dementia

qgc · August 2023

Anyone else living with a spouse with early onset dementia with kids at home? DH has just been diagnosed, although this nightmare journey started over a year ago. We thought he was suffering from depression and so he's been in intensive outpatient treatment for major depressive disorder. We have three children, ranging from 11 years to almost 17 years. I'm super overwhelmed, don't know where to start with anything really, and really sad that I have to do this all by myself. I would say he might be in stage 4 or 5 at this point, but how am I supposed to know. I see all these articles about early onset where the spouse is with it, fighting this disease, going on vacations, etc., but that unfortunately isn't us. I haven't been able to have an actual conversation with him in over a year.
So many concerns from finances (how the *^&! are we supposed to pay for his care, plus kids and household expenses! We do have LTC insurance but it's only going to go so far. Do we really have to deplete all of our life savings?!) to the kids (they are dealing with it in their own ways, and also have their own needs that have nothing to do w/their dad) to just how in the heck I am going to get through this to what to expect and more. This is the worst.
Anyway, thanks for listening. I feel marginally better. And if anyone out there is in a similar spot, please let me know.

Ed1937 · August 2023

Qgc, welcome to the forum. Wish you didn't need it. Yes, we have people here with kids. I'm sure they'll be posting.

If you haven't already done it, you need to see a CELA (certified elder law attorney) as soon as you can. They can handle whatever you will need, and answer questions for you. They will explain how medicaid works in your state, and there's a reasonable chance medicaid will be in your future. This is something you need to do soon.

Feeling overwhelmed is something many of us have experienced. But we get through it with the help of others, including the people on this site.

Ask any questions you might have, or just rant if that makes you feel a little better. It sometimes helps just to put it in writing.

M1 · August 2023

Welcome qgc. I am so, so sorry. The burden of single parenthood, your own grief-and all of a sudden it's like you have a fourth child with special needs instead of a partner.

One thing that occurs to me-have you called your local Alzheimer's association chapter to ask about other families in your area in a similar situation? To include local support groups? Might be helpful both for you and your kids.

Forget those Hollywood images of the brave omniscient spouse who does it all-that's nothing but an image. Most of us here know what it's like to barely be able to put one foot in front of the other. The folks on this forum understand and can be a huge help, practically and emotionally. Keep reading, keep posting, come back.

qgc · August 2023

thank you both.

I've been to a CELA and am working on some things. As for Medicaid, he will have a pension as soon as he retires (working on that, too) but that means he won't qualify for Medicaid and all the pension will probably go towards his care. The other complication is that things have progressed so quickly that he does not have the capacity to sign a POA, so I may have to do a guardianship proceeding. I've started the SSD paperwork so he may at least get Medicare, for whatever that's worth.

I will call the local AZ chapter, thanks for the suggestion.

I just did a session with a new therapist, who suggested that we do family counseling and set boundaries. BOUNDARIES?! (You said I could rant, right?! I've just been repeating Family Counseling?! and Boundaries?! in my head in various tones with profanities.)

M1 · August 2023

Sounds like you need a counselor (for yourself or your kids) who is more familiar with dementia. It is laughable to suggest that--both in terms of boundaries and in terms of a PWD being at all able to participate in family counseling. Scratch that and start over--perhaps your local Alz. chapter would have a suggestion on that front too.

Iris L. · August 2023

Read a lot of threads and post often! This can be your therapy.

Iris

Mollykazoo · February 9

Hello!

I’m new to this space. Haven’t found the courage to think deeply about ALL of this until now. I am in the earlier stages of a very similar situation. My husband is 55 and recently diagnosed with early onset Alzheimer’s. He’s still working (but I’m nervous that his employment may not last, based on his day-to-day functioning).

We have three kids ages 21, 18, and 11.

When I let the reality of our situation sink in, I'm absolutely overwhelmed and wind up in heaving sobs. Since my life is bananas and I have three kids to reassure and care for, a full-time job, an aging father, AND a husband who gets lost on simple errands, I cannot allow myself to break down in sobs or face the enormity of this shitshow very often. I generally compartmentalize and try to focus JUST on what is right in front of my face.

There’s so much to think about/plan for and I do not know where to begin. I am sort of glad to hear I’m not alone…but also, that makes me feel sick.

This is the worst thing I can imagine for so many reasons.

im happy to have a community of wiser people to turn to. Thank you.

molly

JeriLynn66 · February 9

Molly @Jeanne C. has begun organizing a “newcomers” thread on this site to help

Ed1937 · February 10

@JeriLynn66 is the newcomers thread up and running? Will it be on the Spouse and Partners forum? I've seen it mentioned, but I haven't seen it. If it's available now, a link would be appreciated.

Ed1937 · February 10

@Mollykazoo I'm sorry you are dealing with this now. The fact that you are overwhelmed is understandable. There are so many things that really need to be done at this stage, it seems as if it's impossible.

You need to get all the information you can about dementia, so here is a link to get you started.

https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun

One of the first things you should do is to meet with a CELA (certified elder law attorney), even if you think you are too young for that. You need it, and if you wait too long, you will be sorry. They can protect many assets for you, and they will make sure you have everything you will need to get you through this without going completely broke. Medicaid is a big thing, especially for young onset. They will know the work around to get him qualified in your state.

With a diagnosis, he should be approved for Social Security Disability with no problem. You will want to pursue that ASAP.

There are many other things the members will suggest, but it might be a good idea for you to start a new discussion to get the best (most) replies. Just click on the orange circle with the plus sign, and follow the prompts.

M1 · February 10

Hi molly. Look under Groups to the right of the page for the newcomers group (a gathering of frequently cited useful links).

I'm so sorry you are facing this. First on your list: talk to a certified elder law attorney (CELA, look at nelf.org) right away. You will need power of attorney for finances and healthcare, and he needs to apply for short and then long-term disability right away, and SSDI. You don't want him to be fired for cause, which could cost him his retirement benefits. CELAs can also help you think about how to finance memory care should he need it in the future, and can update your wills (remember, yours will have to be redone too as he should not be named as your poa or executor). He will be eligible for Medicare one year after he is approved for SSDI.

Much more to come, but i guarantee you'll feel better if you get this big stuff out of the way first. You want to do this while he can still sign. Then you can think about how to grieve together as a family, and how to tackle your bucket list.

You have come to a good place. We'll have your back.