Patti2021 Asked July 2021
Any help? My 61 year old, sharp as a tack husband is now developing what appears to be dementia after two strokes.
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Some days he is still sharp and I think I'm the disturbed one, other days he's sort of lost, forgets short term conversation, cannot retain information and it's so depressing and scary to see the dark tunnel our life is going into!
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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.
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!
Thanks for your post!
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 🌷
Thank you for posting this. It is common knowledge among many who've been on the forum for a while that UTIs can cause some serious issues for those with dementia, but other infections and imbalances CAN impact the person as well. I recall another thread where the woman finally discovered her mother had an infection in her mouth - once treated, she was back to her "normal."
The more we can stress testing for ALL infections and imbalances, the better! Before dementia, my mother had an episode of "confusion" and not feeling well. Turns out she drank TOO many fluids and washed out her system. Once treated, her nasty self was restored! So, in addition to infections, we need to be aware of dehydration AND overhydration.
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.
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
Thank you. We all benefit from responses here. Gena
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!
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
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.
See his doctor since they can see and examine the patient and know his health, current lab work, and medication history.
Dad’s stroke was linked to A-fib. He was fit, a good weight, healthy diet and exercised daily. No diabetes.
I do not think anything is gained by assuming OP’s DH was in terrible health.
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.
work -a- holic for decades and cutting down has been hard.
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.
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.
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.