My husband is 75 and diagnosed with MCI. This has come at a time when he completed a book and is launching it on Amazon. After the diagnosis I understood why it took so long to finish it:) So many things clicked into place about behaviors over the last few years. This must have been coming on for a long time and it took awhile to actually get it through my head that we needed to check him out.
MRI showed an old stroke and a mass. Both the Dr. said are not currently causing the memory issues. Still waiting for a PET scan to see if it is really AL. His mother died at 83 with it and it came on about this age.
I thought I could support him with this book launch till the end of the year so he could enjoy his achievement but everything requires a decision. Working with a web designer or publisher, following a schedule, or write an email.
Every morning I help him put together a simple list of a few things that he can do and this is very difficult. He understands that it is difficult but tries to stay focused and keep working. But later in the day when I talk with him I realize he has spent hours on something not on the list but that he thinks is important.
I asked him to come up with things he likes to do and other than his Masters Track Events and work outs all he has ever wanted to do is write and talk about his topic - which is about sustaining exceptional performance. He feels as if he ought to be able to just muster up the motivation and keep going. It's only going to get worse I know.
Any advice from people who have been there. I would love to create some good times for him while he can still enjoy them, maybe impossible? Not sure. Would love to read your experiences and ideas.
He had been declining mentally and acting erratically for some years but was able to “coast” to an extent by the fact that others in his department covered for him and my mom was in denial herself.
After his behavioral problems escalated, he was forced to retire suddenly. He didn’t want to and didn’t see any problem with his very problematic/borderline harassment behavior in the workplace or with his crazy, dangerous behavior at home. So, we convinced him that he needed more time to work on the book. But once he retired, he found himself pretty much unable to work on the book and what he did do was order multiple copies of a lot of other “research” books that he never read, dug huge holes in the yard st random in the middle of the night, and submitted an outline that was terrible and rejected by his editor. So we convinced him to cancel the book contract.
It sounds like your husband has at least some degree of not understanding his own cognitive limitations (extremely common and almost zero chance of this improving!!) and also some degree of executive function impairment (also extremely common and very likely to get worse!!).
It may be that asking him what he wants to do or what he thinks he can do is not worthwhile. It certainly won’t work to have him pick from a list and expect him to follow one of those for hours. He is going to need to either meander from one activity to the next that catches his fancy (assuming he does no harm to himself of others) or be pretty closely supervised.
My father was convinced that he could do — and should do— all kinds of things that he was no longer capable of doing and it caused a lot of grief. Tending his retirement accounts, paying bills, filing taxes, driving, weeding and watering the garden, adjusting the thermostat, protecting pipes from freezing, cleaning the gutters, feeding the fish — all things he was 100% convinced he could and should do, all of which he made BAD and many times dangerous mistakes doing.
You won’t really know when the next downturn will be or how fast he will progress. But my advice is to continuously remind yourself he WILL get worse and you CAN’T trust him to know what he can and can’t do or to stay on task. I know this is incredibly hard to adjust to. This is the man you have known and loved and trusted for decades.
sorry for this depressing advice. I wish you the best and hope it never gets this bad for your husband.
So now is the time to get all your legal ducks in a row(Will, POA's Living Will, POST or MOST forms etc.) as if you wait too long to do these things he will no longer be considered competent to do them legally.
Also educating yourself about the horrific disease of dementia will help you as you travel this very difficult road with your husband, be better prepared for what is yet to come.
And I have to disagree with your husbands doctor who says that your husbands "old stroke" has nothing to do with his cognitive decline, as folks that have had a stroke are at a much higher percentage rate of having dementia down the road. So obviously this doctor is not well versed in dementia and what can be the many causes.
When my late husband had a massive stroke at the age of 48, I remember his neurologist telling me that he was now at a very risk for developing dementia down the road. And of course because my husband was so young at the time I didn't give it much thought. That is until my husband started showing signs of dementia and was diagnosed at the age of 70 with vascular dementia, though he was showing signs a good year before that.
And unlike Alzheimer's which can go on for 20+ years, vascular dementia only has a life expectancy of just 5 years as it is the most aggressive of all the dementias, so very important to try and get a proper diagnosis.
My husband died at the age of 72.
So be prepared best you can, enjoy each day the Good Lord gives you both, and make sure that you are taking care of yourself along this difficult journey so you can be the best version of yourself for your husband.
And know what your limits are so you don't burn yourself out. Seek out a good in person support group, so you can share with others that are going through what you are and that will understand.
You are stronger than you know and will come out on the other side of this a better person.
God bless you as you travel this very difficult road with your husband.
Make sure you get a professional editor, not someone who lives down the street and says they are an editor. This will cost some money, but your husband's happiness is important to both of you, and he probably should have had one from the beginning of this project.
I'm very sorry about what's happened. If he's up to it, I suggest a group tour by motor coach for you and him, maybe a week long visit to a national park or historical place of interest. Maybe some performances in your town, plays and music events. As his disease progresses, things happen, such as incontinence or inappropriate behavior, which means the outings I've suggested won't be possible. It can happen quickly. Better to get them in now! Good luck with all of this, and again, I'm sorry.
I took control of the finances, and put his safety first. No more woodworking unless I’m present. No more driving.
As I’ve taken control, I’m calmer and so is my husband. I still involve him in all of the decisions, except for absolute safety issues. We sit down to the computer together. I’ve streamlined our lives where possible, and put his comfort and safety first.
Good luck, and have confidence in yourself.
You give memory to your husband and enjoy the moment...lucky are connected couples...it is a simply another state of living relation
All the best to you.
"The life expectancy of someone diagnosed with vascular dementia varies depending on factors like age, overall health, severity of symptoms, and the number of strokes or vascular events they've had. However, on average:
Average Life Expectancy After Diagnosis
3 to 5 years is the most commonly cited average lifespan after a vascular dementia diagnosis.
Some individuals may live up to 10 years or more, particularly with milder forms or well-managed cardiovascular health.
People with severe vascular damage or repeated strokes may live less than 3 years after diagnosis.
Key Factors That Influence Survival
Age at diagnosis = Younger patients tend to live longer
Number of strokes = More strokes = higher risk of decline and mortality
Heart disease or diabetes = Can shorten lifespan
Smoking & lifestyle = Poor habits increase risk of further damageLevel of care and support
Good medical and daily care can extend quality and length of life.
Progression of Vascular Dementia
Vascular dementia often progresses in a “stepwise” manner — with sudden drops in ability after new strokes or vascular events.
Unlike Alzheimer’s, it can sometimes plateau for a while, especially if cardiovascular risks are controlled."
By having someone help it might make the process go a bit faster so you two can enjoy some time.
And while I say "enjoy some time" I also mean that you should take care of legal matters that are important now.