Dealing with a Spouse with a “Mild Cognitive Impairment”

@trishaanderson He seems to but I still have everything in containers normally everything has its place. My girlfriends always laugh and say what’s the next project? 😁 I think the Lupron shots make him more irritable but after a month he seems to calm down. But I have to say with the MCI, cancer and fractured back he is doing amazing and he’s always telling me he’s happy, that’s worth the weight in gold.

So very lonely when they don’t react to my laughing at a book or a movie on my laptop. Doesn’t seem to care that im enjoying myself. Yet he laughs and makes silly jokes with friends or even strangers. Today was not a good day. Memory from moment to moment was tiny, expressions are few, looping over a job that he wants done now, but we can’t do it yet because we don’t have the right paint. Jobs that need completed he won’t begin, so strange. Im praying tomorrow will be a better day.

@lkbous
My husband resents me saying anything that contradicts him to the healthcare workers. I do remind him before we leave that i may have to jump in because its vital to his health that they have facts. He will agree, but when it happens i get the glares. What can you do? I’m trying to be understanding and gentle but then i mess up.
One moment at a time caretakers!“do all we can do and know thats all we can do”

@rubyredkate
It just occurred to me that so many of us are saying the same things that we go through day by day-groundhog day, over and over, it’s like we’re playing a game that we can never win! It’s like we’re being punked. The cruelty of this disease is a two way street! Why?!? What is the end game?

Yes, I feel your pain but know you are not alone. We had mold in our house and had to move out, the same week my husband was diagnosed. It's been real up and down, in and out of hotels, trying to figure out what we're doing and where we're going. So I know about being alone, too. I feel it and know what you are going through. Every day brings something different to deal with. I keep thinking in my mind about how things were. I'm trying to plan out what to do and when, as I know this is a progressive disease. I want to talk to him about it, but that doesn't work or make me feel better. Your husband's 2019 diagnosis gives me a hope that this won't progress fast. I worry about the infusions my husband is taking, and whether he'll have side effects. That constantly keeps me in worry mode. So between worry and feeling alone, it's a lot. Especially, for me, not anchored in our house where our life is in storage. But I keep reminding myself, they are just things. I'm going to reach back out to church on Sundays, and seek out a group of friends, to be more involved, and hopefully, get him more involved in the process. I think caregiving is lonely, but what I see, is that often people just don't want to know and/or be involved, because they are worried the same thing will occur with them and/or one of their loved ones. It's sad, but it's life. So yes, having this group, is incredible knowing that there is "this family" of others willing to share and going through the same thing.

@rubyredkate Agree totally. We are the people in their life that know everything about what they do , what they need and our feelings don't matter. Yes, they do.. I give him great care and ignore myself if he needs something. Sad but true! I get tired, I get sick and I'm the one who makes your life easier. Please know I have empathy..but when you are more interested in strangers or medical situations
that you are not relaying the information. Yes, I needed to hear someone understand how we feel.

@lkbous
Well said!!

@rubyredkate

I think that this happens because your husband's reality is not your reality. And as time goes on there will most likely be a bigger difference in what he perceives and what you see happening. That is the nature of the disease. When you correct him, he may resent it because it implies that he doesn't know what he talking about but I truly believe that that is how he sees it. Before taking my husband to the doctor I make a list of my concerns, questions and observations and I give it to the receptionist to give to the doctor BEFORE we see him. That way the doctor has my version of reality and there is no need to contradict my husband in front of the doctor. I also write down what the doctor's response to each of my questions. I am stressed at the doctor visits and I don't trust myself to remember all of what was said. Lastly be kind to yourself. There is no one way to navigate this journey. Reaching out on the page is a good way to vent and get support. It has done so much for me. God bless you and your husband.

Whew! Some days I wonder how I will continue I am so exhausted. I fear that one day I might be too tired to pay the attention that I need. I do appreciate the fact that we still have lots of good times together and he always apologizes when he knows I am at my wits end. Then I tell myself does he really have MCI he has never been evaluated but he doesn’t remember things as they were and when we are out and he talks to people I can see the look in their eyes showing they do not understand but always smile. So many nice people out there.

@ocdogmom
Thank you for sharing your tips when visiting the doctor. I really appreciate your encouragement and will see how i can implement it.
At this point his memory loss doesn’t even come up in his appointments. His GP has it in his file but other types of professionals do not. So they look at me like “why are you speaking “? Its very tricky in this age of privacy.
Thank u again.
I hope you both have a good day tomorrow .