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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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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
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NYDaughterInLaw Jul 2021
This answer is so very good!
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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.
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Patti2021 Jul 2021
Thanks so much
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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.
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TouchMatters Jul 2021
Excellent suggestions / advice / support.
Thank you. We all benefit from responses here. Gena
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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.
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MargaretMcKen Jul 2021
This is a really helpful reply, but it shocked my socks off because VD here has always meant Venereal Disease!
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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.
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disgustedtoo Jul 2021
There can be "step downs" in levels as well. There's no doubt my mother had short term memory issues. About 9 months after moving to MC, she had a definite "step down" in level. At that time, she was living her life about 40+ years ago. I determined the time frame from various comments and "discussions." Asking about her mother - gone about 40 years. Referencing a cousin's baby when asking about her own younger sister ("baby" would have been about 40yo at that time.) Forgetting her condo of 25 years, focusing on the previous residence. She still knew who I was, because I would have been an adult at that time - perhaps looking a bit older now, but still an adult. She was vaguely aware of my kids (both early 40s then), but had forgotten YB's kids, who are about 20 years younger.
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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!
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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
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Patti2021 Jul 2021
Thank you so much. What a wealth of info!
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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.
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disgustedtoo Jul 2021
It is so important for people to understand that dementia can impact people in different ways. It depends on the underlying cause of dementia as well as what part(s) of the brain is impacted AND the person. Their background, demeanor and various other personality traits can result in variances in symptoms and behaviors as well as time lines.

Thanks for your post!
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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.
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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.
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Patti2021 Jul 2021
He refused to ever go back to the neuro docs ever again. Does not want to be evaluated, questioned, or watched at all.
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