Any help? My 61 year old, sharp as a tack husband is now developing what appears to be dementia after two strokes.

Vascular dementia can occur after stroke(s) in many people. Here is an article on the topic from the Mayo Clinic:

https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793

The American Stroke Association also has a good website with lots of useful info:

https://www.stroke.org/en/about-stroke/effects-of-stroke/cognitive-and-communication-effects-of-stroke/vascular-dementia

A person suffering from dementia of any kind does not act lost and confused all of the time; each day is different. There can be lucid times and other times where they're in a state of total confusion; I see it all the time with my mother who suffers from VD.

Please contact your husband's doctor for more information on the subject, and consider joining support groups in addition to AgingCare so you can develop coping strategies. Learn all you can, too.........The 36 Hour Day is an excellent reference guide with tons of helpful tips and info on the subject.

Wishing you all the best of luck navigating this difficult situation.

After my husband had a massive stroke back in 1996, I was told by his neurologist that his chances of developing dementia down the road was very high. I'm guessing your husbands neurologist told you both the same.
Well of course I hoped and prayed that that would never happen, but in 2017, I started noticing changes in my husband, and in July 2018, he was diagnosed with vascular dementia, which is the most aggressive of all the dementias, with a life expectancy of only 5 years. My husband died Sept. 14th 2020, at the age of 72.
With vascular dementia, you usually see the physical changes like unsteady gait(falling), and incontinence before you will see the mental decline, although that does come as well.
It's best to take him to his neurologist to find out exactly what is going on, as there are many different types of dementia. Also make sure that you educate yourself about Alzheimer's/dementia, so you will better understand what your husband is going through. Teepa Snow has some great videos on YouTube, that you can watch and learn from, and as lealonnie mentioned the book The 36 Hour Day is a great resource as well.
Stay strong and positive and just enjoy each day with your husband. He's still the man you love and married, and he needs you now more than ever. God bless you.

I'm sorry to say that yes his stroke may have lead to dementia depending on what area of the brain was affected. My father experienced strokes my mother nor I saw any evidence of. Dad who was much older than your husband had strokes in the balance center of his brain - it did explain why he was falling so much. Dad had mixed dementia - AD and vascular.

Have his dr re-evaluate him and if necessary seek a referral to a neurologist that specializes in dementia who can test him on some regular basis to track his changes.

Bless you and your husband.

Hi Patti, we have some things in common. I am also a nurse caring for my 56 year old husband who had 3 major strokes 6 years ago. It is indeed a roller coaster ride. I have noted my hubby consistently has trouble finding words and his speech is slower than it used to be. I am so thankful that for the most part, he has his mind working in a capable way. He is very intelligent and I suspect has just found other ways of getting around the blocks. But, there have been a handful of times when I was concerned we were headed for dementia. He literally seemed to have episodes of living in another time and dimension and wouldn't make sense. Those mental health things have been the hardest for me to cope with, because I feel so alone and it creates a stress environment over fear of the unknown. Helping with the physical needs is easier, but tiring. In retrospect, the most concerning behaviors that happened were after he had come OFF of Cymbalta and after running out of Xanax and withdrawing. Crazy delusional, hallucinatory things. So, just something to review, in case that may be happening with your husband. Like others have mentioned though, of course dementia is a possibility with stroke survivors. Just know you are not alone! Blessings.Hi Patti, we have some things in common. I am also a nurse caring for my 56 year old husband who had 3 major strokes 6 years ago. It is indeed a roller coaster ride. I have noted my hubby consistently has trouble finding words and his speech is slower than it used to be. I am so thankful that for the most part, he has his mind working in a capable way. He is very intelligent and I suspect has just found other ways of getting around the blocks. But, there have been a handful of times when I was concerned we were headed for dementia. He literally seemed to have episodes of living in another time and dimension and wouldn't make sense. Those mental health things have been the hardest for me to cope with, because I feel so alone and it creates a stress environment over fear of the unknown. Helping with the physical needs is easier, but tiring. In retrospect, the most concerning behaviors that happened were after he had come OFF of Cymbalta and after running out of Xanax and withdrawing. Crazy delusional, hallucinatory things. So, just something to review, in case that may be happening with your husband. Like others have mentioned though, of course dementia is a possibility with stroke survivors. Just know you are not alone! Blessings.

It happens to the best of us.
Mare sure he gets a check up and try to live each day as it comes.
It's very hard losing a part of you but just remember to have patience because hubby is going through more than you and he can't help it.

Please let his neurologist know about these symptoms so that he/she can follow up. Most of this is probably from poor blood circulation to those parts of the brain. My thoughts as a nurse is that he either has blood pressure problems or developing narrowed arteries to areas affected. Either should be able to be managed by the neurologist or another doctor.

Could be medications doing it especially if on any kind of psychotropics or narcotics. With two strokes it sounds like he's in terrible health--probably obese, diabetic (not in all cases, but most) with hypertension.

See his doctor since they can see and examine the patient and know his health, current lab work, and medication history.

Bring it up with your husbands neurologist. Vascular dementia is often tied to strokes. My Mom has it and she has TIAs.
It isn't like alzheimers with its steady decline. It can be at a stable level for the rest of his life or the sufferer can have a rapid decline...it's the dementia with the widest parameters of lability.

Hi Patti,

I suggest you study/research the stages of dementia (many resources from the wonder people on this blog) so you can become well prepared for what lies ahead. The stages of this condition varies from person to person so there is not set time for when these stages will take place. However, being PREPARED and ORGANIZED will provide you with the best peace-of-mind!

When you understand the different stages, you can put things in place to avoid being overwhelmed and confused when things happen.

These are just a few example of some things to start thinking about:

1. PUT ON PATIENCE!
- Know what to do when he has those moments of confusion.
- Know what to say/not say to avoid upsetting him
- Know when to correct and or remind him of something

2. BE PREPARED
- What he should/should not have full access to (I.e. car, stove, credit cards, medication, etc.).
- Prepare for incontinence (pads on the bed, his favorite chair, how to respond to the accidents, etc.)
- Put a good reminder system in place such as sticky notes because people know when they are starting to loose their minds but don’t want you to know so they pretend to know and remember things.

3. GET SUPPORT
- Talked to trusted family members and start putting a care plan in place.
- Stay connected to Aging Care, join other support groups
- Talk to his doctors and other doctors about any questions you have

4. GET LEGAL
- Make sure bank accounts and other legal docs are in order (your name on all accounts, medical power of attorney (POA), will, estate, etc.

5. DON’T KID YOURSELF Patti!
- His condition is certain and will not get better.
- Don’t get confused if he seems ok for longer periods of time than usual
- Be honest with yourself about what you can/can not handle and go back to #3

6. Every now and then, re-evaluate all 5 steps above and make the necessary adjustments.

I know this is at the early stage and some of these things may be far off but “trust me” being well prepared and organized will simplify your life, help you keep your emotions in check and go through this will some peace-of-mind.

Prayer & Blessing

My mom did the same thing - good days and bad days, although they mostly happened in her last couple of years after her dementia had gotten pretty bad. She had mini-strokes, mild strokes, ETI's and possibly constriction of the blood vessels to her brain - all caused by A-fib. Sometimes she seemed to recover fully, and other times, after a few weeks I would think, "yes, she lost something there."
Do talk to your husband's doctors. At this stage, there may be quite a lot they can do to slow the progression of his disease and prevent the worst days.
It is very stressful to deal with those ups and downs. Do as much as you can to take care of yourself - healthy diet, exercise, time to yourself. Find someone you can talk to, and people who can help you when things get overwhelming.
Prayers!

This is a terrible situation and so hard on you. Talk to the doctor as to what can be done to stop or minimize these events. Take care of yourself first and foremost. Talk to an eldercare attorney so you can get legally protected and also get a Power of Attorney, etc. Consider that you may not be able to or want to keep him in your home - do you want a caretaker to relieve you or would you consider placing him? The line gets drawn when his behavior has a very damaging effect on you and your life. Then you must decide what the next step is - so start finding out all you can now.

I googled - this is worth reading through and following up for further information.
Gena / Touch Matters

Can dementia be brought on by a stroke?
The brain damage that occurs with a stroke or a ministroke (transient ischemic attack) may increase your risk of developing dementia. May 9, 2018

Vascular dementia - Symptoms and causes - Mayo Clinic
https://www.mayoclinic.org › syc-20378793

Search for: 
Can dementia be brought on by a stroke?
What are the signs of dementia after a stroke?
What Are the Symptoms of Stroke-Related Dementia?
Memory loss, especially problems remembering recent events.
Inattention, poor concentration, difficulty following instructions.
Difficulty planning and organizing tasks.
Confusion.
Wandering, getting lost in familiar surroundings.
Poor judgment..

Stroke-Related Dementia: Cognitive & Vascular Dementia ...
https://www.emedicinehealth.com › article_em

Search for: 
What are the signs of dementia after a stroke?
What happens when someone with dementia has a stroke?
Does dementia get worse after a stroke?
Can dementia get worse suddenly?
Does a person with dementia know they are confused?
Are stroke victims more likely to get dementia?
What stage of dementia does Sundowning start?

Stroke-Related Dementia - WebMD
https://www.webmd.com ;› Stroke › Guide

Apr 12, 2021 — People who have had a stroke have a far greater risk of developing dementia than people who have not had a stroke. About 1 in 4 people who have ...

Vascular Dementia | American Stroke Association
https://www.stroke.org › about-stroke › effects-of-stroke

Nov 21, 2018 — Vascular dementia, which is commonly associated with left-hemisphere stroke, impacts reasoning, planning, judgment, memory and other thought ...

Stroke and Dementia: What's the Link? - Healthline
https://www.healthline.com › health › stroke-and-deme...

In a 2012 study, one researcher reviewed nine studies on dementia in people who've had a stroke. In total, the study looked at 5,514 people with pre- or post- ...
‎Connection between stroke and vascular dementia · ‎Types of vascular dementia

The Link Between Stroke & Dementia | DispatchHealth
https://www.dispatchhealth.com › Blog

Understanding why dementia can occur after stroke ...
https://www.alzheimers.org.uk › research-projects

Nov 27, 2018 — Almost a quarter of people who have had a stroke will go on to develop dementia after about three to six months.

Stroke-Related Dementia: Cognitive & Vascular Dementia ...
https://www.emedicinehealth.com › article_em

I wonder if he’s possibly having small seizures which can result in inability to converse and retain information short term. If so, seizure medication may help. A consultation with a neurologist seems like the way to go.

Please don't panic - knowledge is power. Get him evaluated by his primary and ask for a neurology referral. One step at a time. Be diligent but patient. Sometimes you need a few professional opinions in order to get a proper diagnosis. Once the root cause of these changes is determined and you find out if this is a permanent or short-lived result, you can make next steps.

Patti2021: The answer that you're looking for in a large part may depend on the type of strokes that your husband suffered, e.g. whether they were ischemic strokes or hemorrhagic strokes.

A 2012 study by the Nuffield Department of Clinical Neurosciences at Oxford determined that stroke is a risk factor for dementia *and* dementia is a risk factor for stroke. This is another chicken-and-egg problem. Poster's husband may have been developing dementia before he had the two strokes.

We know that with dementia, the brain shrinks. We know that there is no cure. We know that dementia drugs ease symptoms in some people for a while, with most easing symptoms for 6 months at best. And those 6 months can be made worse by the side effects of those drugs.

Dementia drugs have a long list of nasty side effects including nausea, vomiting, diarrhea, loss of appetite, bladder incontinence, cramps, fatigue, difficulty falling/staying asleep, dizziness, nervousness, depression, confusion, hallucinations, itching. And those aren't considered serious side effects that include fainting, abnormal heart rate, breathing problems, bloody vomit and stools, seizures.

My Mom is also a stroke survivor 1/2019.
Her long term memory is 100% - her short term memory has always been harder but she works really hard to retrieve the answer on her own now when something seems “off” to her and has done well with starting to retrieve the real answer on her own vs the one her brain first goes to.
When she has the slightest infection or even something like low electrolytes - even low vitamin D she exhibits a lot of behaviors or confusion that are much bigger than just stroke brain. She also recently started a SSRI which does seem to be helping her with quicker reasoning and judgement.
I would make sure he doesn’t have any infections - get bloodwork done - and speak with his doctors in there to any new medications that could be worsening his cognitive state - prayers for answers.
My mom like your husband will always be at a higher risk for vascular dementia - but there are also small things that affect their brains much harder that could be causing you to notice such a sudden decline. Try clearing the basic things first and wishing you the best 🌷

After my father's stroke he began to accuse my mother of having a boyfriend. He would spin facts into evidence. For example, he knew the code to the home alarm system and when my mother asked him for it (in case he forgot it) my father told me she wanted it so she could disarm it and let her boyfriend in at night. He was so convincing, I started to wonder if he was right. (He wasn't.) In most other parts of his life he was aware and showed little cognitive impairment. I'm a filmmaker and made a documentary about this. It took me 10 years but I've come to believe his deep seated fear of being unlovable surfaced in the form of this obsession. As a young, healthy man he avoided this belief- staying busy with work and raising a family. But as he aged and grew frail he was no longer able to hide from it and it consumed him. He was diagnosed with vascular dementia. Fortunately, while making the film I discovered many unknown facts about him and his past. it was an opportunity for me to see him in a new way. It wasn't an easy process but it was an important one.

Patti2021;

Having come back and read some of your responses to others, this may be a case where he has two different underlying causes of dementia - vascular and FTD.

You mentioned the FTD and some of the symptoms and behaviors you describe do seem to fall into that type. He also falls into the prime age group. Due to the strokes, he may exhibit symptoms of vascular dementia as well. Hopefully the doctor will discuss his condition with you AND provide some useful insight and help. Try making contact by phone first and explain how he is refusing to go back for any further testing or treatment. The doctor should be able and willing to provide the information you need, based on what he's seen so far.

The following link provides some helpful information on FTD and may explain some of the behaviors you've observed and described:

https://www.theaftd.org/what-is-ftd/disease-overview/

There is a link within that page that gives some additional information, including some managing techniques without medication, that you might find useful:

https://www.theaftd.org/living-with-ftd/managing-ftd/

At the bottom of both pages, there are links for a helpline, email updates, support groups, resources, publications. You might find some or all of these of some use to help you understand and cope. There are some here who may have experience with FTD, but these supports are focused primarily on FTD, so you may do well by contacting them.

It is so hard when it's a parent who has dementia, but many have lived a long full life. I'd rather it not happen to anyone, but to have it happen to those who are still relatively young is such a devastating thing. Just when you can retire and begin to enjoy your "golden years", life throws this nasty curve ball at you. There were several women in mom's facility who were much younger, like your husband. When it's the love of your life and he's transformed into someone you hardly know, it has to be so hard. Many hugs to you!

'Unfortunately I found out yesterday he specifically denied me access to his records."

Well, that stinks. I would still recommend you read through the web pages for those links I posted. You may gain a little from them.

"I guess my husband of 39 years wants me completely ignorant and oblivious. I am so angry and hurt and frustrated that he would do this hurtful and selfish thing."

Remember it is the condition that is doing this, not really your husband, though it comes from his mouth and actions. It presents barriers, but not all is lost yet.

Remember #1 is to ensure he has no access to a vehicle - sometimes simple disabling, like removing a battery cable, works, but for many men, this is too simple and they can figure it out. A kill switch can be installed by a mechanic or The Club can be used (this is less expensive and no need to schedule time to get it put in.)

#2 was a strikeout, so on to #3

Many EC attys offer a first consult (limited) free, so see if you can find several, so you can choose the right one for your needs. Draft as many questions as you can before the appointments and take notes!

I would NOT bring him along with you - this discussion should be between you and the attorney only. What you may need to do is apply for guardianship. The court will order testing to determine what his needs and capabilities are. Since he is adverse to going to the doctor, refusing to believe any Dx and refusing to take any medication, they may need to have him admitted to the psych ward for full testing. The EC attorney can answer these questions and guide you.

He may not need full guardianship at this time, but at some point he will. Guardianship, unlike POA, can facilitate having him moved to a facility, if/when that time comes. POAs just give legal ability to manage documents, finances, sign paperwork, etc. Guardianship is much different and gives the guardian more sway over the person.

Given you can't get access to any medical information, this is about the only course of action you can take. Certainly you don't have to follow through, but getting legal guidance now, before it gets much worse, is better for you. Finding the right attorney, one who has had experience with similar clients, would be the first step. Let the attorney guide you - this IS such a difficult position you are in.

Please don't blame your husband. Although the actions and words come from him, he isn't really in control anymore. This is a serious medical affliction and the changes wrought by it drives his actions and behavior. Avoid confrontation. Avoid arguing or trying to direct him. Go with the flow, so long as it isn't dangerous activity. Read through both the pages, and follow the links found in them. They might be useful to you.

Its tough to see a loved one go thru this. My mom had strokes/vascular dementia. I would speak with her provider(preferably a geriatric provider) and discuss the changes you are seeing. There are some wonderful organizations in your community that can give you support and help you get thru this. As a caregiver you need to make sure you take care of yourself first so you can take care of your husband.