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.
I'm so sorry for what you and your husband are going through.
My mum's condition seemed to go up and down with vascular dementia, rather than just following a clear downward trajectory.
Mum was 63 years old when she had the stroke that led to her developing vascular dementia. I think that she may have continued to have TIAs, as well as epileptic seizures over the years. She died last year, at 76 years old.
Mum seemed intelligent for much of the time, in as much as she could beat us at quizzes, give you the higher level synonym you were trying to think of, and work out puzzles. She could also use reasoning and abstract problem solving on really good days.
So, you would think that she could follow basic instructions, know how to use a bathroom in an unfamiliar place, or make herself eat because she knew that her muscles, including her heart would "atrophy" if she didn't (her own words). Sadly, not only could she not do these things, she would get lost going to the bathroom in her 3 room flat and couldn't even tell you her age or where she lived.
Mum couldn't be trusted with her medication (she couldn't understand why she needed tablets, as there was nothing wrong with her - not even the epilepsy) and she couldn't handle anything that might hurt her. She might have kept her intelligence, but she had no sense.
You need to take over a lot of the important things that your husband does, such as sorting and administering his medication. I would suggest you do this in such a way as it seems you are doing this together, rather than you are treating him as if he isn't him anymore.
However, it isn't safe for him to drive now. You may need to be inventive, seeing as he cannot recognise that he has a significant cognitive impairment.
Your husband will soon need care. Whether that continues to be in the home or in memory care depends on how swiftly your husband's condition deteriorates, or how cooperative he is.
Please don't promise to keep your DH at home. Not because you would need to keep that promise - you wouldn't - but because it would hurt you to break it. Your emotional and mental health are vitally important, and you need to safeguard yourself as well as your husband.
Nobody can know exactly how your husband's disease will progress, everyone is different, but it will progress.
You will need to make legal arrangements now, so that you can take care of yourself and your husband.
Try and avoid absolutes, except for promising yourself that you will not ruin your health and your life because of your husband's illness. It won't help either of you if you push yourself and burn out.
Take care.
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And, keep coming back here. Lots of experienced supportive people have been in your shoes. And offer lots of compassionate understanding.
Gena / Touch Matters
I am sorry you are dealing with this major problem.
The good news is that Vascular Dementia is something that can heal to some extent by physical therapy and over time. Moreover, your visit to the neuro is important contrary to what your GP told you. The trick is to manage your LO's health in such a way to minimize the occurrence of future strokes. It can be done and your neuro visit can help in this regard.
This book explains in easy-to-understand language how to care for dementia at every step of the way.
Vascular Dementia
Vascular dementia is one of the most common types of dementia after Alzheimer’s disease. Vascular dementia sometimes co-occurs with other types of dementia, such as Alzheimer’s. However, around 5 to 10 percent of all dementia cases in the United States are due to vascular dementia alone. Vascular dementia is caused by blockage or rupture of cerebral arteries. As a result, cells in the affected area are deprived of oxygen and nutrients, causing them to die.
In this type of dementia, symptoms may appear stepwise and suddenly. For example, a stroke may cause an abrupt loss of mental and physical ability. After a stroke, the patient may not be able to regain their previous levels of cognitive and physical function. If they suffer another stroke, the symptoms, along with the damage, may increase in severity and may spread to new areas.
Strokes do not always present with obvious symptoms like a sudden onset of paralysis. Multiple small strokes may occur without any obvious symptoms, and may go unnoticed by the patient and their family.
Most patients with vascular dementia also suffer from other conditions such as diabetes, high blood pressure, and high cholesterol. Many also smoke.
This type of dementia is more common in advanced age, but there are cases under the age of 60. Symptoms and complications vary from patient to patient. Impairments in judgment or daily decision-making may appear alongside physical complications such as problems walking, or numbness or paralysis on one side of the face or the body. The location of vascular damage in the brain, its severity, and the number of strokes directly impact the patient’s level of mental and physical capacity.
Vascular dementia cannot be healed. Dementia can't be fixed, although some medication can slow it in the early stages (which, it seems, this has already passed).
Vascular dementia does go up and down, but it still continues on a downward path, even when there have been very good days.
It is true that a brain haemorrhage will lead to neural pathways being damaged and that some new ones might be created, given time and mental stimulation. However, once dementia is diagnosed, time will only lead to further cognitive decline.
There is considerable shrinking of the brain with dementia, as brain cells die. They are not replaced. Physical therapy cannot change this. Brain atrophy is not reversible.
This isn't to say that PT might not be helpful if strokes have led to physical impairment that's possible to improve, but the OP didn't state that.
It's unlikely that a neurologist can help with anything further than a doctor can, at this point. The neurologist can't prevent further strokes or TIAs. If lifestyle changes can help, the GP would be able to help with stopping smoking or controlling cholesterol. If there is a possibility of epilepsy, though, the neurologist can help with that - but that hasn't been noted either.
If the OP is somewhere that requires medical appointments be paid for, then I would caution against spending money that won't help - money will be needed to pay for care and other necessities.
In the UK, Mum had every test and specialist appointment available. We didn't have to worry about the cost, but it didn't make any difference. Nothing could be done about the vascular dementia.
The neurologist dealt with Mum's epilepsy, which was worse after having the major cerebral haemorrhage, and he changed her epilepsy medication.
He also told her to stop smoking and eating foods with high cholesterol, as the GP also did, but he couldn't change what had happened and he couldn't do anything to prevent Mum having another stroke. Unfortunately, the drugs that can help to slow dementia (although I'm not sure if this is just for Alzheimer's) were not available to Mum because of the epilepsy.
Make sure you have POA, MPOA, a will, and/or a trust in case something happens to you. And transfer EVERYTHING in your name or add your name to every important document, down to and including bills, if this hasn't been done yet. Go to each of your banks or financial institutions and ask what they will need in case your husband will not be able to give permission for you to speak on his behalf. Do this too with insurance and credit card companies too. Make sure your name is on house and car titles.
Contact his H.R. office to see if there is anything that needs his signature while he is still able to understand what he is signing. Do you know if he has investments where he worked? Make copies of your marriage certificate. Never give up originals.
I'm sorry to speak like this. It brings back a lot of sad memories for me. I'm fortunate I found a caregivers support group of men and women who went through this before me at IMCC.
Re: How do you know if you have to take over his meds...
Is he in charge of that now? You can count his pills in each container and check everyday but it's easier to see errors if you prepare the doses in a daily pill caddy.
Driving? - You'll know when he can no longer manage driving. I hope you drive with him on daily trips to monitor his ability if only to go for an ice cream cone or to a park. There may come a time when you will have to disable his car by removing a battery cable, or by asking a mechanic to install a "kill switch" that must be engaged before the car will start. YOU must prevent him from harming a child, adult or pet as well as himself.
When we dearly love, admire and respect our spouse it is impossible to lie to them. If you dearly love Michael and want to preserve his dignity you will have to. You will have to come to grips with becoming his Mom.
I don't know anything about this but maybe you can do some research into applying for Social Security Disability Benefits (SSDI) for dementia diagnosis. I hope that's helpful.
I'm so sorry for you both. This is a big, big deal.
My heart goes out to you.
Your husband can also develop other types of dementia, just like everybody else, on top of the one he has now. Basically, the goal is to allow him to do as much as possible. The goal is to keep him safe and healthy. If/When he starts having problems with his medications or driving (or any other task that becomes dangerous), enlist his doctor, the local authorities, and anybody else he respects to allow you to take over that responsibility.
NOW... but not as a drastic change. I was able to take over my husband's when I noticed he was dropping pills or putting them in the wrong section and his symptoms did not seem well managed. I don't think you can start too soon, but you probably can start too late. If you don't already know his routine, it is a good way to become familiar and it will be easier when you have to.
I insisted on "helping' my husband by putting them in his weekly container for him, which he had always done. For a while longer, I allowed him to continue using them himself. I could still check later and it limited his access (or mistakes) to one day at a time. I told him that even I could also make a mistake so I needed him to check the meds to be sure I had put them in the right container OR you can simply try starting by letting him know you will start helping him by checking behind him to be sure. Be sure you are doing it in front of him, either way you choose as a way to build trust. After a while, my husband stopped being concerned and lost interest. Of course some men are not as agreeable to change as others.
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.
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.
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.
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.
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.
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.