Introductions: Are you caring for someone with dementia?

Hi Joey. My name is Connie and my husband is Roy. He was diagnosed with MCI some 4 years ago, and I appreciate your ability to communicate with him about what's happening. That has made a lot of difference for me and Roy. It is particularly good because the rest of our lives will be different than what we had planned several years ago. We need to make arrangements for later, because right now Roy is aware of what he does and does not want. There 's some really good stuff available on that with Alzheimer's association. Just as you, I thought I wanted to just know more about the disease and what I could do to make it easier for us both. However, now I know that I need personal support more frequently. It is so wonderful to hear once in a while -- you did just right, or that was the right decision Connie, and it's OK to do some for yourself...take care or I will be in trouble, as I am seeing stress/pain in my back and elsewhere. Keep talking and keep knowing that you are doing the very best you can with what you have at this particular moment.

Connie - thank you so very much for reaching out to me. : ) I feel a bit confused as I read on Mayo's site that MCI can go away, or can stay the same, perhaps get better. Do you move forward, as a couple, assuming the worst, or do you hold out in hope for improvement? I personally, have been watching (not so silently - bringing it up to him, to family members) the changes for the past number of years. I will take a look at the Alzheimer's association for the future as you have suggested. But, if I may ask, what sorts of things are you guys deciding on?

Hi @joey333 I know your question was directed elsewhere, but wanted to add what my wife and I did as her cognition became more impaired. A lot of our discussions were the result of what we witnessed with her folks, when they didn’t have similar discussions.

My wife, as difficult as it was at times decided on HIPPA permissions, advance directives, living will, POA, her final arrangement desires, she even planned her music and celebration. We also discussed and made several estate/will decisions for our children and real estate.

As our time together got more and more medically challenging this made those times easier since many decisions had been made and made by her. It alliviated a ton of doubt and second guessing.

Strength, courage, and peace!

I want to add that, we did that too, several years ago. Even picked things out and pre-paid a funeral. I am so thankful we did that much ahead of the need. The more open we were, we felt would alleviate any doubt about our wishes from our family. Better have it done sooner than later, in my book. We will all be leaving this beautiful earth and it won't be on our time schedule and it is so easy to put off facing getting things in order.

Thanks so much for your reply, Scott. : ) I feel concerned when I read your reply as well as Virginia's. Tom is just 60 and aside from the diagnosis of MCI is very healthy. Is there something I don't know about? Does this shorten his lifespan? I have watched his memory decline over the past few years and we finally have this diagnosis. But, am I missing something? Will this go faster from here, is there not hope for recovery - please be forthright with what you know and help me to understand. Thank you! : ) Joey

Good morning @joey333 I certainly did not mean to alarm, rather thought ‘forewarned is forearmed’.

Our decision came after watching my family of origin fall apart due to my parents planning only verbally and seeing something similar with my wife’s siblings due to poorly written planning and then trying to decide how to address some unrealistic deathbed requests made.

Any of us could get hit by a bus tomorrow so it is best to plan. Also in the case of my wife we knew her cognition was at risk so we wanted to do as much as we could to avoid the destruction she saw in our families by not planning adequately. Additionally my wife actually enjoyed personally handing certain items of importance of hers into the hands of a few folks.

@joey333 Good morning to all. I am also sorry to alarm you. Scott's message is in line with mine. We plan for the inevitable and then when that is taken care of, we get down to the business of living our best.

Any advice is good advice for me right now

Thanks so much, Scott! : ) I will definitely speak with Tom about it and I am really glad you shared the information and your family experiences with me.

Thanks, Virginia . . . it is just that my family has been in denial for so long and I have been the only one pushing, hoping for a diagnosis of some sort to understand what we are dealing with. Also, then with learning the initial diagnosis of MCI, hoping that it could remain that way after what I read. But, all is in God's hands. I hope and pray for a miracle, which, of course, He will do, if it is what is best for us - I trust this and in Him.

I am trying to educate myself, here and there, amid our busy family life, with trusted websites like Mayo. I do want to be best prepared for what may lie ahead. I am grateful for the information you guys have shared. I just have to figure how I will bring it up with Tom.