My first support group

Kristi, welcome to my world as caregivers. Yes, the working thing while my husband is still upstairs sleeping. The elephant in the room! (or not in the room!) When he does get up and I'm asking him to engage on something we talked about days ago, he's forgotten and is not good at any logical decision making. He's not even interested in going there again. My husband is still independent too, although I'm not a doctor., but I think my husband is definitely more tired than he used to be. Why I want him to sleep. I'm not sure if that's the MCI and what's happening in the brain, or the lequembe infusions he's on. I think it's both. My husband is self-centered too, but as you describe, definitely sweeter. He was always kind, but since the MCI, I notice something different - in the way he interacts with me at times and definitely in the way he eats. It's almost childlike picky, plays with the food, moves the plate around to position it. As for the food, he drives me crazy, but it's his plate, after I've made it and served him. Clearing the table is interesting too. He'll help do the dishes, but leaves most of the after-mess on the table, doesn't clear the table, like we have talked about multiple times. It's interesting the quirks...things that he'd never did before that seem to bother him now. Driving in the car - yes he is still driving - is a directional challenge. He's okay, he can do it, but not knowing where he's going even with my Apple Maps where I'm telling him, he doesn't listen so that creates minor melt downs. Enough so, I just want to drive. He's obstinate, wants to go his way, but go figure when he doesn't even know the area, so how would he know what his way is? It's all so unbelievably challenging, but like you all, it's what we deal with every day. I'm going to a 6-week caregiver class at the hospital next week, so I'm very interested in what they share. As caregivers, we hope for the best...plan for the worst. Thanks, for your share, and welcome to this group. I try to post every day something of value - as I'm like a sieve with this group and have gotten so many informational "tidbits" for now and for later. Thanks, to all for sharing.

Hi Kristi -
Welcome to the group from another skeptical support group person who has been converted! This group is wonderful and so helpful with ideas and suggestions. I have never engaged in support groups before either, and was not inclined to do so at first, but I am very glad that I did. For me, not having my husband as a reliable sounding board any longer has been a big challenge, and this group has helped to fill the gap.
I wish I could say that I don't get irritated anymore, but that isn't true. I am 10 years in on this journey of watching and trying to support him through this slow decline and although I am MUCH better at handling the frustrations, I am far from perfect, and no matter how much more patience I can achieve, I find that something else changes and MORE patience is needed. Teepa Snow has some good videos on the "changing brain" (most are free on Youtube) that have helped me put things in perspective. The harsh reality is that my husband's brain is dying a little more each day, until one day a part that is in charge of running something really important like his heart or respirations is going to quit and then that will be the end. So even though I get frustrated when I discover a day later that he put the bottle of cream in the pantry closet instead of the refrigerator when he was "helping" me put away groceries, I try not to get upset or tell him in a way that might make him feel bad. I just deal with it and move on and remind myself that he really can't do tasks without supervision anymore. It's not his fault; his brain is just not working and no amount of explaining or trying to "teach him for next time" is going to work. His learning days are over. He does remember the things that are important to him "what's for dessert, today?" 🙂 - he never forgets to ask about that after dinner! Until I suppose one day he will. His ability to be empathetic or be appropriate in his conversation is long gone. He likes being with me and follows me about constantly, sometimes from room to room even when I am only getting one item and then returning, but he has no real appreciation for all of the things that I am handling now that he isn't. I stopped feeling resentful about that at some point, but I do remember being angry and very put out about it. It's still a lot that I have to do on my own with no rational partner to discuss things with, but I just realized one day that there is a very good likelihood that I will be doing all of this on my own when he is gone, so I better use the "now" to get the hang of it. I got all the passwords to things that I need access to, added my name to the accounts that didn't have mine on it (cable, Verizon, etc.), updated POA's Living Wills and all the legal paperwork. At least I have these years to get all of that in place while trying to make his declining years as pleasant and carefree as possible. It is easier now that he is out of the angry, combative phase that we went through. I gave up a career that I loved to be able to stay home and care for him. He is glad I'm home with him, but there isn't any real awareness or appreciation of the sacrifice that I made to make this happen. Like you, this was not at all our plan for retirement and our "golden years". We are taking one day at a time and trying to make the best of each day that we are blessed with.
Sending heart for you on this journey.

@kjc48 kjc48 Please don't let him drive. He is driving by rote. In other words he can use the gas, brake and steering wheel , but is not thinking about where his is going, what comes next and what potential problems could occur. Would he be capable of slamming on the brakes if a child ran in front of him, a car stopped extra short, someone changed lanes, didn't look and cut him off? We all think our diagnosed loved ones are better than they are in decision making. Lack of adult decision making, inability to understand consequences and confusion about directions and locations are all higher level brain functions that are lost first.

@kjc48 kjc48 Please don't let him drive. He is driving by rote. In other words he can use the gas, brake and steering wheel , but is not thinking about where his is going, what comes next and what potential problems could occur. Would he be capable of slamming on the brakes if a child ran in front of him, a car stopped extra short, someone changed lanes, didn't look and cut him off? We all think our diagnosed loved ones are better than they are in decision making. Lack of adult decision making, inability to understand consequences and confusion about directions and locations are all higher level brain functions that are lost first.

@gilkesl Thank you for reaching out and telling me what I should know. All these changes of things he shouldn't do, and trying to convince him why. You are correct. Confusion about directions and locations, with your reference of being able to act quickly if a child or adult got in front of him, so many things to consider and worry about. But your share, reminds me that along with paying the bills, driving, is now an issue. Thanks for the share.

@kjc48 My 82, soon to be 83 year old mother has dementia. The other night she said, "I am just going to have to drive down to see you." I live 36 miles away. I told her she can't drive because her license is expired. She told me she needs to get that renewed. She also has heart disease, non-alcoholic cirrhosis and type 2 diabetes. Rather than argue or try to convey to her that she can't drive, I redirected the conversation to something else. Her short term memory is such that this is fairly simple. What is hard for me, is she is still so much herself. It is hard to remember that she will forget what we are talking about. I have to take this life one day at a time. I read this this morning and it resonated with me.

This day is a beautiful room that’s never been seen before. Let me
cherish the seconds, minutes, and hours I spend here. Help me to
think before I speak and pray before I act.

Hang in there and thank you for joining this great group of people. Reading about others and their experiences helps me so much and most likely everyone else.

@callmegram I am glad to read that your husband is willing to talk and has become kinder. We are currently in a similar place.
BUT-Since I now have to learn the ins and outs of finances, and basically run both of our lives at this point, I find I am short of patience on days when he wants to know what I’m doing, and talks a lot…and I can’t keep a string of thoughts going in my own head, which at times, is very important! How do you manage quiet/thinking time? Best wishes. So grateful for this group!
And Kristi, welcome to this group! I was quiet when I first joined, but people here are so wonderfully supportive and helpful! Welcome!

@2me
Quiet thinking time, hmmm, that would be now, in the middle of the night, when my insomnia kicks in.😫 Managing everything, while caring for, basically, a toddler, is challenging at best, overwhelming at worst. At 82 I’ve been on this journey with my husband, who is 86, for at least twelve
years (we have been married for 63 years). It has moved slowly, but we are now at the stage where I take care of, pretty much, everything! This includes our rental properties which are located in a different state, a 14 hour journey by car.😵‍💫 This was not in our plan, it happened suddenly after we travelled south to our vacation condo, six months ago. My husband had a severe reaction to the change in environment and I realized he could no longer travel…this is where we need to stay. Soooo, I am now a long distance property manger, until I can divest of them…and that’s a slow process. My current dilemma is arranging for family to stay with him, while I travel north, for three weeks. I need to take care of emptying and repairing our primary home, with the hopes of getting it on the market as soon as possible. I also have a major repair on a rental, due to the extreme winter. Quiet thinking time is what I need, to make a viable plan, to get quotes from contractors, schedule work, and make flight reservations…driving, especially alone, would no longer be safe. It’s a lot of coordinating, which sometimes makes me testy, when hubby interrupts, with “what’s for lunch?” or dinner or where’s my …. Today, I was on the verge of a meltdown. The condo security guard pasted two large warning stickers on my front windshield…because my owner’s decal expired five days ago….Really!!!Two stickers…and, I was parked in a handicap spot, with a proper placard, because of a lifelong walking disability! I couldn’t reach to get both of them off, and I was wasting part of my limited time for errands.😝 The kindness of one of the staff, in the pass office, touched my heart. It made me realize, once again, that I am not alone. Pam, insisted on putting the decal on my windshield…when she saw the remnants of the warning notices, she grabbed her windex bottle and scraper and went
to work.🤗 I’d love to say my day went better after that but, alas, it did not. However, I had this inexplicable feeling of a comforting presence…I call it my guardian angel…that stayed with me for hours.
I am also very grateful that I was forced into the decision to make this our primary home. We are now in a better place for both of us. The condo lifestyle is easier, the warmer weather gets us out and about more, and we have developed friendships, over the fourteen years as part time residents. I don’t know where this journey will take us, but I do know I’m not alone.
Many blessings to you on your journey.

@jniels Wow. What a lot of hurdles you are facing, in addition to the main one that brought us all here! This Mayo Connect group has been so supportive and wonderful. How terrific you have family that will stay with your husband while you tend to the sale of your primary residence! We, too had a second home where it was warm, but we elected to return to where we’ve lived most of our lives, because of proximity to family. I’m happy with our decision, but it’s been quite the winter. I’m hopeful that Spring will help both of our outlooks, but especially my husband’s, as his balance is not good, so getting out and just being outside should help a lot, once the weather improves. How wonderful you have “Pams” in your life! What a kind gesture from her, and it probably helped you more than she knew. Best wishes in the repairs and sale of your home.