For those living with MCI: How are your family members are coping?

I was diagnosed with Frontotemporal dementia in June.
My husband and my daughters go back and forth. He’s the one I live with (40 years) and rely on. He’s okay with doing most everything around the house & yard, so long as he gets together with his friends pretty often to go boating, motorcycling, & skiing. If anything interferes, he gets all doom & gloom.
The daughters, one is 4 hours away. She was just here for a few days & was very sweet, & trying to connect, took me out antiquing and lunch. This was after acting like she didn’t want to deal with me in June. The other daughter lives on the other side of the country & rarely connects.

Those of us with early diagnosis have time to get our houses in order. It’s not an easy task, but it’s essential. I have some help trying to get my finances, etc together. I could not do it alone; I tried.
My MCI is very early, & in spite of confusion about dates & events, I’m doing well at this point.
I’m trying to plan ahead while I can. My husband was diagnosed with FTD in 2023. He no longer speaks. We live in a retirement facility & I have great support here. I’m not ready to announce my situation, as I really don’t know what is ahead for me. I’m sad & depressed currently, but I think/hope that this will pass. .
I’ve done pretty well with his dementia until recently. He knows me and occasionally responds to me.
I’ve called a counselor and will start working with her soon. I’m likely in some denial & my children do not accept that bloodwork and scans show that I have plaques & tangles (amyloid & tau.) This is an interesting situation where I accept & they don’t. I’ve been working with the neurologist’s NP, & I won’t see the neurologist until late January.
My faith sustains me, and this is a gift, not of my making or merit.

@jhall55, this is a great question. I hope you saw the replies from @marthamu and @susanejw. I'd like to also tag other members living with cognitive impairment (MCI) like @SusanEllen66 @fletchette @carmine100 @ashley43725 @pb50 @hinsopa to share about how family members react and cope with your diagnosis.

Hi. I have been diagnosed with MCI for two years. But long before that I knew that with a strong maternal family history of the disease, it was unlikely I would escape unscathed. So for years I have been discussing my strategies and tactics to mitigate and/or deter onset. I have written a document explaining everything that must be managed when I am incompetent or gone. I have forced them to look me in the eye and hear what I expect and what I want - and don’t want. I chose a nurse friend as my healthcare power of attorney because once I have material dementia I no longer want any treatments that intend to prolong life… and she can insure that. I have forced the two (a son and a granddaughter) I chose as my estate executors to review the procedures after my death and before - when I am alive but incompetent. I have reviewed what kind of facility I want when i must go to one and that my nurse friend understands this is not a period of my life when I appreciate luxury.
In short, I have bullied and shamed them to deal with their disinterest and discomfort and give me an hour On more than one occasion. I have forced one to meet with me and my financial advisor so they are not meeting for the first time when I become incompetent or die.

It is uncomfortable for them and I regret I must make them uncomfortable. But such is life. And I cannot know when I won’t have the ability to have these discussions.

And having done all that I can focus on how to squeeze every extra minute of lucidity out of the time I have left.

I am not a typical old lady. I was a Marine and a Banker and so creating a result is natural to me. And it is familiar to my children. You will have your own style but I hope this was useful. And I offer you my best wishes.

Hello everyone!
I haven’t posted for awhile, been watching from afar.
I’m sorry to hear of your diagnosis.
This is going to be a tough row to hoe for you. I was diagnosed with Lewy Body disease 3 years ago. My neurologist told me to live my life as if nothing was wrong and try not to think about it. Yeah right. I tried to follow his advice, but I went into melancholy for a year or so. I felt I was in a dark deep hole with no way to get out. I could see no light and happiness was far far away.
My wife and family was supportive, shocked at first, sad and unsure how to help me.
After awhile I realized that the only way to climb out of this hole was to get myself together mentally and to get a grip emotionally.
My neurologist was right. If you think about this disease and the consequences there of, it will attack you mercilessly and so will the melancholy.
I am not saying that I now run through the woods with flowers in my hair and singing. I still have periods of melancholy and can feel myself slipping into the dark hole of melancholy, but i resist. I still have 90% of my abilities and I use them in such periods. I build models and read, and talk to my wife about how I feel. It does help.
I cannot escape what is going to happen to me in the distant and uncertain future, it looks dark and foreboding, I try not to look there, as for now it’s to far away, and it frightens me.i only think of today and live in the moment. You are what you think, a vey true statement, and one I now live by.
I retire in three days, Labor Day is my last day and I find I can think of nothing else. After fifty years of working it has now come to an end! I am excited, and for some unknown reason, a bit sad. I suppose my feelings will work themselves out and I will understand more fully then.
I hope your family will support you as mine has . It took them awhile to work things out, as it shall you.
I know what the future holds for me, and I am not afraid, mostly curious.I exercise and take my meds. Hopefully this will slow the progression. At least that’s what they tell me.
I shall remember your post, and I shall remember and think of you. Don’t be afraid, it not as bad as you might think. You are not alone.
Regards, Ashley

@marthamu you are very strong!
Your family is worried. That’s understandable.

You have and are continuing to get the support in place for your future. MCI can stop its progression. In fact, many people stay relatively well for years after the diagnosis.

I was diagnosed with MCI about 5 years ago. At this moment, I feel just as well, if not better than I did back then.

Living alone has forced me to organize all the services and support I need. It has all be working well for me.

You and I have been granted grace that cannot be earned. I am happy to meet you.

@pb50 I have done a Trust with all the usual POA etc. I had three children but only one capable of helping, to be fair my daughter passed away.

I was diagnosed with MCI about 5 years ago. I’m still doing well. I live alone and have systems in place that are available if I need them.

I’m almost 77 (how did that happen) and have started painting. It really soothes me and I have turned out some good stuff. I guess when you sell a piece you’re doing okay.

Things have a way of working themselves out on their own.

Keep us in mind when you feel like writing again.

@SusanEllen66
How absolutely encouraging!! I am going to drag out my water color supplies to see if i can still paint at all. Thanks for the inspiration!

@pb50 great! I’ve learned through trial and error that having fun with the paints is more important than anything else.
I have thrown away more pieces of watercolor paper than I can count!

Enjoy your time with the paints.

I agree. Though it has been a decade, i just ordered some decent paper and paint - i still have my brushes though some may need to ne replaced. We’ll see 🙂