New and need advice

micki517

My husband is 55. I am 56. He was a middle school Math teacher and then elementary school principal. I am a former high school History teacher. Before teaching, he served in the Navy and suffered a Traumatic Brain Injury as well as exposure to chemicals that brought on a rare form of Dercum's Disease (an auto-immune disease with angio-lipomas that form all over his body - over 1000 in his case - in addition to a number of other symptoms). We finally figured out his diagnosis and the cause in 2011 after he "lost" state testing booklets (a big issue in public schools). He was also going to do teacher evaluations and forgetting where he was going at that he was even going to do evaluations. That's another big issue since it's scheduled so teachers can prepare the lesson for the evaluation and do all the extra steps in the process. Mayo Clinic did the diagnosis and sent us to a specialist in CA. She was amazing. My husband was one of her rarest cases. She explained that our lives had to change immediately and that this would only progress. He would lose his mobility, his mental acuity to brain fog, and possibly his life if the lipomas formed into or against organs.

We modified our lives. Since stress and anything producing adrenaline aggravated the Dercum's, we retired early and he stopped doing most of the physical things he loved doing. We traveled as much as possible, and we did a lot of bucket listing. And things have progressed. He's had both hips replaced, a number of surgeries to remove larger lipomas, and then there is his memory.

He goes through the VA 100% for his medical care. This has been fine. Not great, but fine. But recently, his neurologist has left and they are "unable to reschedule his appointment due to staffing issues." Even before this, they tested him for dementia every 5 years, but never had a plan despite seeing decline. It was always a watch and see approach.

And now we are here and things are quickly getting so much worse. He can't focus on anything at all. He falls asleep every time he sits down. He gets lost and loses things daily. He forgets everything; he can't even keep track of a conversation in the middle of the conversation. Last week, he even got lost on his way to his hometown 3 hours away. He was in another state, almost an hour past the turn he was supposed to take that we've driven hundreds of times. I just happened to check on him (we track everything now due to the lost wallets, phones, etc) and saw where he was. I spent the next hour talking him through the drive to get him back on track. This is becoming a normal occurrence. Or he goes to Kroger to get bread and comes back with oranges. That's a normal day because he loves to run errands (I think in an attempt to keep being useful and independent).

And I am getting so tired and frustrated with everything. I hate being helpless and this makes me feel very much helpless. And physical exhaustion is an every day occurrence. I have to go behind him to put things away that he misplaces, we spend so much time hunting down things he needs, and I try to fix or replace the things that go wrong… We go through gallons of milk a week because he wakes up early (4-5 am), eats cereal, and leaves the milk on the counter. I wake up hours later to find it sitting there warm with no lid in sight. If I go out to work in the garden, he will start random pieces of clothes in the washer. Then he forgets and I find it days later, wet in the machine. And I have to re-run errands that he likes to run because he leaves his wallet there or the bag of items he paid for at the store, or because his phone is found on a shelf in the store. Tracking devices are a must-have for our daily life.

But the worst part is feeling so alone. No-one gets it because "he is just 55" or "he's just tired" or he will "get back to himself soon." And he has always been my go-to person. There's now no-one for me to talk to. If I talk to him about things important to me, he forgets. Or he can't even follow the conversation. I will tell him we have an appointment tomorrow at 2. Later in the evening, he will ask if I have anything to do tomorrow. Then that morning, he will ask the same question again. Then at noon, he will ask if I plan to do anything that afternoon. Then at 1:00 I remind him we are going, he asks where, and then he gets ready. So, needless to say, all of the scheduling and business of taking care of our every days is all on me. He tries and he wants to help, but then it doesn't get done. But then to the outside world, he seems perfectly fine. He looks fine and sounds fine in short, simple conversations. Even his Dercums is invisible until you look closely at his arms or chest.

And then there is the fact that he knows. He sees all of this. He is fully cognizant that this is happening to him. And he hates it. It frustrates him so much that it depresses him and makes him so down. His mom lived with us through her last year with Alzheimers, so we know what that looks like. He hates that he "is putting that" on me.

And I just miss my husband. I miss my best friend. I miss having a companion that I can just have a normal day with. I miss our lives.

Any advice to get me through this? Any suggestions on what we can do? Any insight on how to handle this with someone so young?

Thank you for any advice you can give. I just need some hope.

sandwichone123

I'm so happy to hear that you've worked through your bucket list. Have you visited with an attorney and gotten your documents in order? DPOA, POA for healthcare, DNR, wills? Make sure you have someone else as your agent, although you may be his.

I know several people who work or until recently worked at the VA, and my view is that you may want to develop a plan B for healthcare. I don't see things getting better there any time soon.

Quilting brings calm

stop his driving and running errands immediately. I know it’s a difficult thing to do - but he’s not got the executive function to be driving. Make copies of all the important items in that wallet and remove all that isn’t needed.

get all the legal papers done - DPOA, MPOA, POLST, wills? Trusts. Gets your name on everything - accounts etc. find out if his retirement or investment accounts have their own POA forms. Talk to a CELA lawyer about what to do with finances to pay for his care and to prove a secure retirement for you afterwards

Read the book the 36 hour day.

You are going to have to restructure your life around his activities He gets up at 5 and eats? Better get up at 5:30 so you can put stuff away. Check the washer and refrigerator daily. Check to send if random items have been moved.

there have been several early onset posters on the caregivers and spouse forums recently. Find those posts and get to know the posters. We are all here for you to vent, ask for advice or if you just need a virtual hug.

The neurologist shortage isn’t just a VA issue. It’s happening everywhere. However- isn’t there a VA provision now where you can ask to be referred to an outside physician if they don’t have one available?

micki517

https://alzconnected.org/discussion/comment/243842#Comment_243842

I didn't think about naming someone else for me. I'll add our daughter to that. Thank you! And I wish there was a plan B for healthcare, but basic medical insurance through our teacher retirement would take 1/2 of our retirement check. :(

micki517

https://alzconnected.org/discussion/comment/243845#Comment_243845

Thank you for these suggestions. I am an insomniac, so I seldom get to sleep until 3 or 4, but I know you are right and I need to adjust. Sometimes it just helps to be told what to do instead of having to make the decision for yourself.

On the VA issue - it's called community care, but the private care doctors that we could use in our area are not taking new patients (because they do not get paid as much from VA program or have trouble getting payments processed). We've been paying out of pocket at primary care just to get urgent issues addressed. That seems to be our only option.

Thanks again. <3

Rick4407

If his disabilities are from his navy service you can apply for VA disability. At 100% it is substantial and you will continue to receive some after he passes. Rick

FredW

This will be the most difficult time in your life.

While on this ugly pathway, you will hurt, cry, get anger, mourn, and cuss the disease. Frequently.

You will most likely be financially ruined, mentally exhausted, and emotionally challenged. You will continuously mourning what the disease takes from your relationship. Hold on to that love you had. That best friend. Those special memories.

You can do this.

I dearly hurt for you, as I do for all caregivers, and, frankly, myself too.

Get tough, educate yourself, be smart, dig deep down and never miss an opportunity to take a break, laugh, or take care of yourself.

Never feel guilty for a needed glass of wine, escaping in a good movie, sleeping in for another hour. Adjust, adapt, and buy small containers of milk.

This is going to hurt.

The folks here understand the shoes you walk in. We live what you are seeing. We are honest and blunt. But, we want you to know, we wish you the best possible outcome. It will not be pretty.

You are going to hurt. We hurt for you. We know, because we hurt too.

Be careful, caregiving can also put you down.

I wish you the best.

trottingalong

You have a lot on your plate. Your husband should not be driving. It’s not about getting lost only, it’s about his reaction time or turning down the wrong road somewhere. We recently lost TWO men with dementia who were still driving. Separate cases, both got lost on mountain roads. One ended up being found with his dog weeks later in a remote road that an off roader found him on. Both he and the dog were deceased. And if your husband would be in an accident you could be sued to oblivion. At this point in time it doesn’t matter what he used to know or used to do. His brain is broken and it’s hard for all of us to comprehend.

tonyac2

You have a ton going on. I guess we all do but in the very beginning of understanding that life is changing in a horrible way, it’s overwhelming. Lots of great advice already given. Here’s mine. I quit telling my DH in advance about any and everything. I tell him just moments before we have to leave. This works for us. He’s not constantly asking if we have to leave yet , or getting anxious that we missed our appt. This is a gut wrenching journey.
The best to you.

SDianeL

So sorry about your husband’s double diagnosis. This is the place for help and support. We understand how you feel. It helped me to realize that my DH was no longer my partner. He was my patient and I was his nurse. You are grieving for what you’ve lost and what could have been. My husband got excellent care at the VA. The doctor shortage is everywhere. Many retired during Covid and not enough graduates to fill the demand. If you haven’t done so, file for disability. Find your County Veteran Service Officer at an VFW or American Legion. They can assist with any claims. Ask his PCP for a social worker. Every VA patient is assigned one. File a claim for caregiver support and respite care. Ask for a referral to a Geriatric Psychiatrist. Demand it if you have to. A Geriatric Psychiatrist is the best doctor to manage his depression and anger. Even if you have to travel to see them. You might be able to do telehealth after the initial visit. A neurologist wasn’t any help for my DH anyway. Sadly, there is nothing they can do. If-when you are no longer able to care for him, the VA has nursing homes and memory care for eligible veterans. My husband received excellent care there. Ditto about learning all you can about dementia. The book “The 36 Hour Day” helped me after my husband’s diagnosis. And search online for dementia caregiver videos. There are some excellent ones out there. Ditto he should not be driving or be left alone any longer due to safety issues.

weareallunique

"And I am getting so tired and frustrated with everything." Can't blame you but a lot maybe that you are trying to follow behind and correct and monitor what he is doing .

You need to get ahead and plan for safety- physical for you both and others on the road [ he shouldn't be driving] , financial - losing wallets , how do you know he doesn't double pay when he's out ? spoiled food - look into refrigerator locks and other safety features for the kitchen .

If you haven't seen an elder law attorney you should to get everything reviewed and updated. Every option needs to be explored. They aren't inexpensive but literally the rest of your life financially is at stake- you could have another 40 years yourself .

I don't follow the in and outs but will the https://www.ssa.gov/benefits/retirement/social-security-fairness-act.html

help you out?

Goodlife2025

@ Micki517 - My husband is 55. I am 56.

So sorry you have needed to find your way to our little oasis, lots of great advice and support here. My DW is age 49 and in stage 5. I would only add that I looked for how this would be a different journey or unique for us given my wife's very young age at onset. But the truth is this disease has very closely followed that of everyone else here. The only real difference being that we seem to be on an accelerated pace moving through stage 4 and into full stage 5 within the past 6 months. Visit and listen to the others here - I cannot express how helpful it has been to learn about what might be the next behavior, development, or safety plan I need to address.

2young4me

Feeling your pain Micki517,

Your experience profiles the last year with my DW who was diagnosed 2 years ago with symptoms dating back to 2021. Her decline has been fast moving over the past year and, as of 3 weeks ago has moved into an assisted living facility. At 61, I maintain a highly active and healthy lifestyle which has been part of my daily routine for many years. I would submit that this plays a major role in my personal well being.

Moving from full time care-giver has had it's own set of challenges, guilt, loneliness etc. When initially diagnosed, our entire family met with a trained neurological social scientist specializing in dementia here in Salt Lake City where her first words were, "I wish to make something clear, S is a widower; he has lost his wife, we call this the long goodbye."

"And I just miss my husband. I miss my best friend. I miss having a companion that I can just have a normal day with. I miss our lives." I couldn't have said it better - I most sincerely feel your pain.

Russinator

((HUGS))