Recently diagnosed with MCI

@njcafe24 What a wonderful post, kind, and considerate of your husband's feelings and the role he will play as your "care partner." I call it care partner, because my husband was diagnosed, and reminded me that we were "care partners" to one another. I think that's key in the initial stages of the diagnosis. Have your husband get your technology passwords and everything in order, in the event you pay the bills, and he has to eventually take over OR do it together (which is what I'm doing currently with my husband). Also get your legal affairs in order, wills, trust, POA, advanced directive, etc., I'm still in the stages of doing that. Do it now, where you both can make good decisions. Talk to the family about the diagnosis, if you have kids. That's important, I think up front, so he has help if and when he needs it. Have him get educated on what MCI is. There are many good books, "Still Alice, "Mayo has a good one, you can get from their Mayo Clinic, "loving someone with dementia." Understanding Alzheimers (Harvard Health Publishing. Don't have him get tripped up on Alzheimer or Dementia wording (and think that doesn't apply to us) since your diagnosis is MCI. It's just good to know and understand MCI if it progresses. Have him attend some caregiver (partner) workshops locally at your hospital, etc., (when the timinig is right). At minimum, just know the support is there. Have him tap into Teepa Snow's UTUBES (I haven't done that yet) but I do go into Dr. Natali Edmonds (Careblazers) and that's been quite helpful. She talks a lot about MCI, Alzheimer's Dementia, behaviors, etc. She also has a "Care Collective" group. And have your husband tap into this Mayo Connect site and Alzheimers.org (although I haven't done much of the latter yet either). The people here on this Mayo site are incredible, helpful, supportive, and very knowledgeable in the early to late stages of the disease. The site mentors also post valuable links to help get educated. I've started to do printouts, where I have a binder of valuable posts. Good luck to you in your journey in MCI. My husband is on lequembe his 26th infusion today. Early treatment gives us hope.
Best, Karla

@kjc48
Thank you so much for your reply. I found it extremely helpful as it gives me a starting place...
We are still attempting to adjust to this diagnosis and I feel our next step is to inform our three adult children which I am dreading.
Again I appreciate your kindness and information.
I wish the best for your husband and yourself!
Carla

@kjc48
Thank you so much for your reply. I found it extremely helpful as it gives me a starting place...
We are still attempting to adjust to this diagnosis and I feel our next step is to inform our three adult children which I am dreading.
Again I appreciate your kindness and information.
I wish the best for your husband and yourself!
Carla

You might consider ordering the book, "The 36 Hour Day", for your spouse and each of your adult children when you address this "news" as a family. It would be an incredibly loving gesture of your genuine concern and understanding of their roles as care partners and supporters as you all embark on this unexpected journey. This book is a "bible" for MCI and dementia caregiving and a reference throughout the journey.

Wishing you peace and a full measure of joy with your loved ones.

@njcafe24 For the foreseeable future, this will become 'your life's work.' Your grand opus. It's the last great undertaking, possibly, probably, that you and your partner will experience together, with you taking up a ton of the slack over time. Not that there cannot be any more fun or experiences to share, but for now, I recommend boning up on the subject like your admission to grad school depended on it. Arm yourself, imagine and do 'thought experiments' about possible eventualities, keep notes, ask questions, read tons, and if you ever need to, find groups of people who meet even once a month to share their stories and tips.

And, remember....you count, too. You live, you breathe, you lament, you fret, you ruminate...along with the best of us. Your life matters.

You might consider ordering the book, "The 36 Hour Day", for your spouse and each of your adult children when you address this "news" as a family. It would be an incredibly loving gesture of your genuine concern and understanding of their roles as care partners and supporters as you all embark on this unexpected journey. This book is a "bible" for MCI and dementia caregiving and a reference throughout the journey.

Wishing you peace and a full measure of joy with your loved ones.

@njcafe24 Carla, I sent my son an email not too long ago as it was obvious to me, he didn't really understand what MCI was. He was just concerned that I didn't want to travel in a plane, when my husband first started the lequembe infusions. I explained to my Bryan, why I didn't want to travel right now (potential brain swelling from the early on infusions), what MCI was, in the easiest terms I could: memory less, his having challenges sequencing thoughts, continually losing things, and the need for a bit more structure so he stays calm throughout the day. For him, I notice more anxiety, when we are driving on a major highway, and/or doing any travel away from home. I explained to my son, that his diagnosis of MCI, was a like a congested highway, where the traffic is blocked and can't get through. The lequembe infusions, my husband is on, is to free up that congestion, so it doesn't progress quickly. Simple analogies that help your adult children better understand what you and I (and our spouses) are still trying to understand with this diagnosis! I told my son we really don't know what the outcome is, but we're taking it one day at a time. I think with the kids, so they don't dread it, just try to normalize it and explain it in easy general terms they can understand. You have a slight but noticeable decline in memory and thinking skills that are worse than typical normal aging. You're still living independently, so is my husband, although we do pay the bills together, and he did get tripped up last year, clicking stuff on the PC and we were hacked into. Just layout a few thoughts in your mind, of what you want to say. Pull up a few links on MCI and offer them to your kids after you talk with them. This way, they become more educated and don't become fearful. We didn't tell the kids right away, maybe 5-6 months into it. And we haven't said much to neighbors as we didn't feel there was any need to, at this time. The challenge with this disease, is often friends that you tell are afraid of it, and they no longer come around. Probably in fear of their own mortality. Hope this helps. The fact that you have so much compassion for what to do for your husband with your diagnosis tells me, you'll do just fine telling your kids, when the time is right. My Best, Karla