New Here - Wife of 56yo - Major Neurocognitive Disorder

MelissaNH

Good Morning. After years of struggling and questioning my own sanity, my husband has been diagnosed with MND by a neuropsychologist. His MRI shows extensive white brain matter and old lacunes. We have a follow-up with the neurologist on 5/6 to get an official diagnosis, cause and prognosis, but according to the report, it does not look hopeful. After 8 job losses over the last four years (he was CFO when all this began and now cannot hold a basic accounting/finance position), we are financially ruined and have no health insurance. I am in the very beginning stages of all this, though I feel as though I have been living in chaos several years and questioning as far back as ten years. I just wanted to reach out and see if any of you could offer suggestions of what I can do take action now. Thank you so much for taking the time to read for any advice you might be able to share. I'm so sorry that we are all here, but hope to find connection, resources and shared support. Thank you, again.

Denise1847

Hi Melissa, I am so sorry that you are going through this terrible experience. There are very wise people on this forum that will guide you. From a financial perspective, I would first consult a certified elder care attorney who can advise you on how to navigate the legal and financial situation.

M1

Yes welcome and I am so, so sorry. Definitely start with a certified elder law attorney (look for lists by location at nelf.org).

You can buy health insurance on healthcare.gov but of course it is not cheap when you are in your fifties. He needs to apply for SSDI right away and should be approved; this will also make him eligible for early Medicare (it used to take a year, but someone recently posted that it's quicker than that now).

There are many here in the same or similar boats. We understand how your live has been upended. This is the best support platform out there, in my opinion. Read a lot of threads and you will learn a lot and also feel less alone.

charley0419

https://alzconnected.org/discussion/69019/new-here-wife-of-56yo-major-neurocognitive-disorder

what State you located in??

MelissaNH

Thank you so much. I'm sure you can all relate when I say I am devastated, heartbroken, angry, terrified and relieved. Would an elder attorney help someone who is only 56? Due to his behavior over the last 5+ we are financially ruined. Oh, and I forgot to add "shocked" to my list of feelings. I feel like one of the main characters in a psychological thriller.

MelissaNH

https://alzconnected.org/discussion/comment/207109#Comment_207109

I am in NH.

MelissaNH

https://alzconnected.org/discussion/comment/207107#Comment_207107

Thank you sooo much! I have been searching this site for "early onset", etc. and trying to soak up as much information and resources as possible. Thank you for mentioning this is best forum because I was wondering where the best place was to get connected. I hadn't checked Facebook, but don't really like that platform. I have been feeling so alone and isolated in confusion for so many years. It's a relief to find a place where others will understand what I've been going through. I know the road ahead will not be easy, but oh man, this has been like a journey through hell already.

mrahope

Hello, @MelissaNH . Welcome to the club no one wants to join. You have already gotten good advice about taking on the financial challenges first. At the very least, since you're now the one who must manage all finances, you need some wise advice. I wouldn't worry about an elder law attorney not taking you on as clients. I think it's more that such professionals are trained to deal with problems that seniors encounter. I doubt there's any age limit for who they will work with.

Jeanne C.

I second @mrahope - a certified elder law attorney will understand your needs and the longterm care options in your state. We were both under 65 when we started with our CELA. Sooner is better, so you can get him on the appropriate benefits.

I'm sorry you're both going through this. It's hard, but will get better as you get educated and organized. Everyone here will be an empathetic ear - we've all been there.

Belle

Sorry you are here with us but welcome. DH and I are also in our 50's, his diagnosis (which has since been walked back and we are waiting on a new diagnosis later this year after testing) was MND, at the age of 57. We have used a CELA to get our legal documents in order…a trust, medical directive, HIPAA authorizations, pour over will, etc. If your DH needs Medicaid they can help with advising you on that too since Medicaid has different rules in every state. Please apply for SSDI ASAP. He will qualify immediately with that diagnosis. Did your DH ever serve in the Armed Forces? There could be benefits from the VA too.

trottingalong

I cannot imagine. Make an appt asap with the social security office. SSDI along with Medicare insurance would help. I believe having a diagnosis like your husband has, rushes the process through. I did google it because a friend told me theirs was rushed through a few years ago.

SSHarkey

https://alzconnected.org/discussion/comment/207116#Comment_207116

Welcome, and know you are alone no more! We are all in the rocky boat together! Hanging on and holding on to each other! Educate yourself by reading, asking lots of questions here on the board, and dig in.

MelissaNH

Thank you all so much. My husband is not a veteran. His behavior over the last five years has resulted in financial ruin. All we have left is our home and his three vehicles and mine. Having three vehicles of his own was a huge issue and I nearly left him after he went and purchased a third one without a mutual agreement. It is a supercharged Camaro with blacked out windows that doesn't pass inspection in our state (NH)! Oh, the stress I feel when I think about that car. Prior to purchasing that car, he turned our Tundra into a "monster truck", spending thousands. The truck barely passes inspection too! I don't know how we'll keep our home and I am just so stressed out. Obviously, finances are NOT the most important thing here, but I hope you all know why I am so focused on it all. It's like I can't even grieve or plan not knowing if we will have a roof over our head when what little money we have runs out. We are in the worst place financially for this to happen. If it had happened five years ago, things would have been so different. I don't really care about my house, but I'm just so scared because rents cost as much as my mortgage, taxes and insurance combined. We also have a large dog (standard poodle) who has anxiety, is reactive and has a degenerative spine. Seriously, this feels like too much and I'm already exhausted. Thank you so much for listening.

harshedbuzz

@MelissaNH

I am so, so sorry for your situation.

When many people think about dementia, they focus on the memory piece when there are other critical losses very early on that can be riskier for the individual and family. Some of these losses include executive function, reasoning, impulsivity and empathy which likely resulted in your DH's behavior. There may even be some FTD in the mix which would explain some of his impulsive behavior. One of DH's old bosses lost his job as a result of undiagnosed FTD-bv; he'd been VP at a Fortune 500 company. His behaviors at home were very like your DH spending irresponsibly.

Yes, a CELA should be able to help you despite your ages. You're going to need POAs to act for him around both financial and medical matters. And you will need to name someone other than him, discretely of course, to act for you.

The money piece is important. Aside from providing a safety net for your retirement, his care going forward will be expensive. Dad lost $360K day trading in the market early in the disease when they were both fighting an evaluation. That would have come in handy when he needed 24/7 supervision.

I would ask the doctor specifically about driving. This could be a source of friction in your marriage as he doesn't sound like the type to give it up easily. Once you are POA, you'll likely need to sell his cars. For custodial Medicaid, you may need to go down to one vehicle. I'm not sure about the rules for Medicaid as healthcare.

HB

MelissaNH

https://alzconnected.org/discussion/comment/207260#Comment_207260

Oh, HB. This is like therapy. You KNOW. None of this feels good, but finally being seen is such a huge relief. I can breath, but I can't breath. My husband was a CFO and part owner of his company five years ago. He's lost 7 jobs since then. Everything you described is spot on and I do think he has FTD. We go on Monday morning to see the neurologist and if I'm understanding the process correctly, we will have a name for whatever he has, the suspected cause and a prognosis. The neuropsych's diagonsis is Major Neurological Disorder involving the frontotemporal part of the brain and from all that I have read, it looks like FTD, but I will look into FTD-bv. I plan to hire a CELA, but I've heard so many horror stories from family over bad lawyers mishandling things. I don't want to make the same mistake. I wondering if it would be okay to ask on here for a recommendation for one in New Hampshire? Is this board for a specific region? I am still learning my way around the site. I was hoping to connect with others nearby as well. There is so much to do. Thank you so much for your response.