I am told by my doctors I have some sort of early dementia symptoms.

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I have "extreme hardening of arteries in the brain". Also. "multiform" stenosis, as per my neurologist, and my extensive MRI of the head and neck.


Given that fact and my indications over the last 6+ years, I am told by my doctors I have some sort of early dementia symptoms.
I've done a lot of research on my own about this and I agree with the finding. I'm cool with it, ok? It is what it is, and that's that.
Over the last several months, I've told my family about what it is and what it will be later on. Close friends, too.


In short I tell them that I am who I've always been now, but very soon I won't be that person. So don't be surprised when it happens, OK? I don't want this thing to be like pulling a rabbit out of a hat already.


My wife of 29 years is on board and we have no children. My sisters and their husbands and their children are also in the loop, God bless them all.


I'm writing here thinking I could/should do more, but right now I don't what that would be. If you have thoughts or observations or whatever, please let me know.

14 Comments

Hi fredrick, you're in the right spot to receive some support and input. I'm very sorry to hear about your diagnosis. I'm commenting here because it will put your post on the sidebar of this website for a few more minutes, and perhaps some others will come along and have some input to offer.

I offer my deep sympathy on the diagnosis and I admire your bravery for tackling things head on and in a proactive way while you're able to. Best of everything to you and your family.
Frederick

I believe there is a young man who started a blog and support group as he navigated early onset Alzheimer's

Not sure if this would be something you're interested in reading or not

My suggestion would be to enjoy whatever you and your wife like and to visit with an attorney to make sure paperwork and any advance Medicaid planning can be done so
Your wife will have an easier journey with you
Yeah, there may be such a person. I'd love to know how to post to him, or to anyone for that matter.
My wife's journey with Vascular Dementia has been on a slippery slope. Don't dis-pare, life goes on and as I place my hands into my Heavenly Father's hands it is easier. BUT, it is still hard to see the gradual changes from one day being very kind, considerate, and easy to visit with and spend time like tonight playing a game. To being chewed out and ALL is bad. It is still hard to go to my own apartment and rest as we all need. Don't forget to take care of yourself. If you don't do that - who will take care of your loved one?
Rick Phelps is the blogger. You can search for his posts.
Yes Rick phelps founder of memory people
My heart goes out to you. You are very brave to acknowledge what the road ahead can be. Definitely find support groups for everyone involved, but also consider traveling or doing as much as you can with your spouse before the changes of the disease take full effect. You still have time. :-) We're all going to die from something. Before I cared for both parents, I never really thought about quality of life before disease struck. Now I have so much more appreciation for life, in general. Please keep your spirit up. Don't let your spirit die before the disease takes over. Everyone around you loves you and will want this for you.
Thank you 'careisgiving' for your positive thoughts. I'm fortunate that friends and ever-growing family, plus 3 favorite nieces to marry soon, are so cool with it and supportive.
Tonight my wife and I will attend a wedding-related BBQ, the first big confab since beginning my quiet disclosure a few months ago. (The first of many more upcoming shindigs.)
I'm sure all will go well considering the high quality of everyone there and their nature. After all, I know (most) of them!
I'm most concerned by the emotional changes that may be coming.
Growing up, I had a 'flash temper' that came and went in just a few seconds. Very vocal and overt, like a flash of lightening. My father had them, too. As many years passed, these episodes became infrequent but never entirely went away.
Over the last year or two, I'm become more aware of these occurrences. Seconds after, I realize how hurtful and harmful they can be, and I always apologize. Even so, I think I'm keeping keeping a lid on it.
I assume these anger episodes will maybe happen more frequently in the future.
What can I (we) do about this?
Frederick, your last comment reminds me of seeing my grandfather deal with Alz in his 70s & 80s. One of his first signs was that he started using swear words and being angry in inappropriate situations. I was just a kid when that happened, but it turned my loving grandfather into a scary guy for me. I can appreciate not wanting to dish out anything like that on your loved ones. There may not be a whole lot you can do about it, but maybe there is: there are medications that can be taken to soothe someone as they go through the "anger" phase of dementia. Depending on if/when you manifest with some outbursts, and depending on how your loved ones feel about it, your doctor could recommend something like a benzodiazepine or a dementia-specific drug, maybe. I'm just guessing.

It would seem the important thing is to have a plan of treatment outlined with a doctor you trust. Even then, you don't really have a way of knowing how bad/not-so-bad your outbursts will even be. You really have to let your loved ones make those decisions for you, don't you?

I appreciate you wanting to know more about the specifics before things progress but the thing is -- there are many different ways that memory loss affects the individual. You're trying to guess your future. I don't think you can do that here.  Trying to predict a disease that has countless manifestations of behavioral change... I don't see how you can truly do that when you have no way of knowing how the disease symptoms will manifest in your behavior yet.

There isn't a single symptom you'll have that someone else hasn't had, though! That should be encouraging to you. There are experts online, like Teepa Snow, whose entire life's work and information on dementia is laid out in variety of places online.

Keep the conversation going (or start a new one)

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