My 59-year-old husband was diagnosed with vascular dementia last week. His job put him on paid administrative leave at the beginning of December due to something being off over the previous 6 months or so. They required him to go through extensive cognitive testing which concluded he was not ‘fit for duty’.
We followed up with his doctor and an MRI and CT scan which showed severe and extensive damage. But his doc said his dementia is in the mild to moderate range. We have an appointment with a neurologist on May 8th. His GP told him that a neurologist is not going to make anything better.
Michael (my husband) seems to think he doesn’t have anything wrong with him. Even though I was there when the doc said, “I’m not going to beat around the bush here. It’s bad! Your brain is really, really bad! You have vascular dementia.” It’s like Michael wasn’t in the same room.
I want to ask the neurologist if he’s had more strokes (he had a "small" deep one in 2014), and if they're expecting more strokes? From what I’ve read, it progresses with a stroke, and I’d like to know a stage and prognosis. He’s had a transplant, so how do I know when to take over his meds? And driving?
This is so hard because I want to protect his dignity. And he loses about everything he touches and he mostly seems okay in every day things. He mostly can do everything. He’s had some notable glitches when he wanted to know where I was when I went to our daughters place 2 hours away and we’d definitely discussed it, and forgot how to work the microwave, and couldn’t figure out how to use the credit card reader at the gas station. He cries — hard! — when we watch TV. At every little touching moment.
His dad died of Lewy body dementia and he said he hopes people don’t think he’s going to be like his dad. I’m not sleeping well and I work and I’m feeling very stressed and overwhelmed and also like maybe I’m just making a big deal over nothing. Even though I know I’m not. I’m so sorry this was so long. It’s just a lot.
Get POA now while he understands what that is. Stay on the forum, ask your questions, vent when you want.
A file dedicated just to this. Speak with human resources (hopefully not outsourced by his company) about applications for disability, and etc. You should see an attorney. Do you have POA papers as part of a will already done, advance directives. Know that his denial is part of the disease and often the worse it is, the deeper the denial. You will need folders as there is going to be a lot of legal work getting papers together with an attorney asap for POA, advance directives, and last work on will, looking forward a likely division of finances to protect YOUR share of marital assets for your own future needs.
Without placement you will not be able to work long. The key words you heard from the doctor is that "This is bad". He will be unable to give you a time frame, but you have witnessed the situation as it has been coming, so you know. Try to get a support group even one online on FB for this dementia.
Vascular often results in some real refusals to accept care, and Lewy's is very different from it. Not to say one cannot have two types of dementia, but Lewy's will be recognized by its very vivid hallucinations if it is coming. It often does not do the "familial thing" where other dementias often DO.
Help from family here? Do you have grown children living in your area? Other family? Close friends.
Steep learning curve and this is going to be horrifically challenging to you mentally and physically and would suggest immediate check in with your own doctor for support.
I am so dreadfully sorry.
I hope you will stay on Forum, read, and will ask individual questions when they come up. For now, today, get that file even if it is an old empty wine box which was my first for my brother when I heard the words "Probable early Lewy's Dementia diagosed solely by symptoms".
Heart out to you. Explore the Forum by going through resources,
Your hubby is so young. This is tragic.
Source: https://www.nami.org/About-Mental-Illness/Common-with-Mental-Illness/Anosognosia/
Your husband is definitely very young to have this diagnosis. I'm so sorry.
I would not have him drive anymore but the best approach would be to have his primary doc or neurologist order a virtual driving assessment through the OT dept. He will most likely fail the MoCA test (or if he already took this test then this would be passed on to OT). There is also a reaction/decision physical portion of the test. If he fails it will be the OT telling him this. Medical professionals are mandatory reporters so his failure report will go the the Dept of Public Safety and they will cancel his license immediately. I just went through this with my Mom recently. She was still angry and in denial but at least I had the letter to show her it wasn't my decision. You will need to keep the car keys on your person so that he cannot take the car out. If you have 2 cars I would sell one and keep yours.
Do you have all your legal ducks in a row? Does he have you assigned as his PoA? Or an adult child who is local, willing and competent? Do you know what triggers the authority of the PoA? You will need to know this.
Everything about dementia sucks. You are not overthinking things -- it is emotionally draining and stressful and depressing. Please focus on educating yourself about dementia so that you can use strategies with him for more peaceful and productive interactions. You will also probably need to meet with a financial planner because you will need to figure out his care plan going forward since he will eventually become a wandering risk and cannot be left alone.
There is lots and lots of information on this site and many very knowledgeable and wise participants who have "been there and done that".
May you receive wisdom and peace in your heart on this journey.
Every caregiver looks for a prognosis and timeline and that is the think that is most elusive no matter which type of dementia we are dealing with.
So time now to get all of your legal ducks in a row, POA's, Will, POLST or MOST forms etc.
My late husband was diagnosed with vascular dementia in 2018(though showed signs a good year prior), and he died in 2020, and although he had had only one major stroke back in 1996 and never another, he suffered from Grand Mal seizures for many years and I know that those caused major damage to his brain as well.
Dementia sucks and dementia is hard on all involved.
And your husbands GP is correct, the neurologist won't be able to make anything better when it comes to his dementia, as there are no magic pills to make it go away or stop it.
Dementia is a death sentence, and the only upside to vascular dementia is that it is the most aggressive, so your husband won't have to suffer as long as those with Alzheimer's which can go on for 20+ years.
Do your homework and educate yourself best you can on dementia. I always recommend the book The 36 Hour Day, along with the many videos that Teepa Snow(a dementia expert) has on YouTube to get started.
I wish you well as you take this very difficult journey with you husband.
I don't think the information about survival rate is correct any more. For starters, vascular dementia isn't always diagnosed that quickly because it often follows other problems that cause brain damage, so it isn't picked up straight away.
My mum had TIAs, followed by a major cerebral haemorrhage, 14 years ago and died last year. She didn't die from the dementia directly, but from CPOD and because she was weakened from not eating properly since the brain damage. If it hadn't been for the part of her brain that controls appetite or fullness being damaged, it is likely that Mum would have still been with us.
Mum had CT scans, an MRI and an EEG test, so the neurologist was completely certain about the vascular dementia diagnosis. I can't know exactly when it developed, due to the symptoms of the stroke and dementia merging, but it was considerably longer than 5 years before she died.
Knowing the stage isn't that important because the stages overlap. My husband is in memory care and they've determined he's in Stage 7 now. The only helpful thing about knowing is explaining to other people how serious his illness has become (if they even understand it). It got me out of serving on a committee recently!
Preserving H's dignity is a nice philosophy, but there will be times when it cannot be done. For instance, he must stop driving now before he hurts or kills others or himself. The microwave might have to be removed or unplugged. He doesn't know how to work it, which could progress to his putting something in there that shouldn't be (like aluminum foil or the cat) and causing a fire. He'll never be able to use the gas station credit card reader again, so get gas when he's not with you.
Be prepared for peeing accidents, rest room meltdowns, losing his way in the neighborhood and all the other dementia behaviors coming up. Those will shred his dignity, but by that time, he won't know what dignity is. Start investigating adult day care and people to stay with him when you are out. Call the county VA liaison if your H was ever in the military. They'll find help if it's available.
I'm so sorry that you're going through this. Accept that it won't get better and that almost everything is up to you to manage now. Read posts on this site to increase your depth of understanding, and good luck to you and your husband.
For where you are now, I'd make sure you know all of your husbands financial logins, logins for retirement accounts, and that you are listed on all of husbands accounts, vehicles etc.
Live in today.
Keep visiting your daughter and getting some breaks.
As others have said, this can be overwhelming in so many ways. Getting with a high quality elder care attorney also with estate planning (wills/trusts) is very key now! Frankly, this may be more important now, then the medical part!
There is a lot of "legal planning" to do. Yes, the POA, advanced directives, Will/Trust and given his "younger" age: yes social security disability but also the potential for creating a "special needs trust." Depending on your State law, the special needs trust typically can be set up for a disabled individual before they turn 65!. This helps protect income/assets for their care, should something happen to you. Another thing sadly to consider, what happens to him if something happens to you.
Do you have adult or younger children? Can be another thing to plan for. If adults, they can be included in this/these discussions; as this is a "family situation." They can be added as secondary POA, health agents, trustees, etc. And/or an attorney or other family member can be identified as a possible guardian if needed.
Working with an attorney, and coming up with the long term plans here is key. Medicaid if at some point he needs 24/7 nursing home care has a 5-year look back provision (federal law) and handing this properly now is key as not knowing is not a defense, there is no do over. An elder care attorney can help with this. And also to protect you (your assets) should Medicaid be necessary.
Before signing anything the employer may send, please have an attorney review!
The part about your LO NOT thinking there is anything wrong, is VERY COMMON. And this can be a very hard part of the beginning stage as they -- no matter how much you or others try to explain -- cannot really process this now. Sadly, you just need with the right legal team and medical documentation (for your State) to step in here.
Getting online access to everything (all accounts, utilities, credit cards, social security, bank, retirement accounts, on a on, to his email too and cell phone too) will really help. Sadly, folks with this can start to make bad financial decisions and bad actors prey such folks.
My mom (w/dementia) would get a "you won" email or text, but we need your "social security number" to process the taxes. YUP over an over, she got scammed until I got control of her cell phone/email and reworked all so that ONLY a handful of known friends/family could contact her.
A friend (she is 76 and not processing well), got a call from "her bank." She was told "There's an inside job at the bank and you lost all the money in your checking account, so NOW you need to move the money in savings account before that gets taken." "Do not call the bank, it is an inside job. Just move the funds to this link...." She moved $26K, GONE.....They create panic, and folks with memory or thinking problems often do this. Duh FDIC covers up to $250K but if not processing/thinking clearly these bad actors scare folks into just doing these awful things.
One can set up accounts to limit the ability to "move, spend, pay" more than $X amount OR YOU or someone else has to approve first.
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