My first support group

Kristi,

I can relate. I also have felt frustrated by having this change of plans in what should be my "golden years." (I am 59... my DH is 68.) I admire your courage to move to a new location and find some joy there.

My DH also sleeps a lot more than I do, but I have found that it is a blessing in disguise. He is pretty early in the "journey" like your DH, but far enough along to show some "shadowing" behavior. He wants to be a part of everything I am doing. So, when he is sleeping, it is peaceful and I am thankful knowing he is safe and content and I can think straight - without him looking over my shoulder or asking what I am doing.

Like your DH, mine has become kinder and more willing to talk on a deeper level. He feels bad, knowing what is to come and the toll it will likely take on me, so he seems much more loving than he has ever been throughout our marriage.

I know it is going to get much more difficult in the years to come, so at this point in the journey, I am counting my blessings.

Best wishes to you and your hubby,
Gram

Please don't push your feelings down, it won't end well.
Feel all your feelings, let out your emotions in a way that works for you (Journaling, painting, etc.).
You don't want to get an ulcer, get sick or have a mental health crisis due to suppressed feelings.
It's important to also focus on you, so you can focus on him.
All the best, and welcome! 🪻

@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!

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.

Welcome Kristi,

You've found yourself among friends who understand most of what you're going through.

My husband was diagnosed in 2012. He was 72 and retired, and I was 60 and still working at a career I loved. I worked for 7 more years, but fewer days a week, but it just got too sad to leave him home alone all day.

For years, he always got up when I did, leaving me with absolutely no time to myself. I started getting up earlier and earlier. I now get up between 3:00 and 4:00 just to have private time to do what I want or need to do, without him following me around. He sometimes sleeps until 9:00 or 9:30, BONUS day for me! YAY!
When you consider how hard their brains have to work just to function, I think they need more sleep.
Warmly, Trisha

Welcome to this dementia caregiver webpage. This is a safe place to vent your very real and valid feelings. I know I have and it has helped my mental health to share this dementia journey with others who are having the same experiences. Sleeping a lot is a symptom of dementia but also depression. My 79 yr. old husband has moderate dementia and now cannot drive, use his phone, work the TV controller, read more than a page in a magazine. He is in bed all day and night except when I go get him up for meals or if someone stops by to see him. I cannot safely leave him alone at home. I have a caregiver stay in his room from 11pm to 7am so I can go upstairs and get some uninterrupted sleep as he gets up frequently during the night to go to the bathroom. Some days I can persuade him to go outside and get some sunshine on our back patio while I am working in my garden. I try to take one day at a time, do what I can and then hand the rest over to God. Keep in touch. Michele

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.

I, too, have newly joined. I believe I am feeling calmer and less angry since I did. It is so helpful to have somewhere to talk about what's going on. Someone else pointed out that the subject seems to be taboo among friends and acquaintances and I think that is spot on. I feel disloyal if I expose my husband's failings to those I know or he knows. Seeing the struggles of others also makes me appreciative of how good I still have it. Things could be worse. A lot worse! And I know, they will be but I'm working on taking it one day at a time.

@2me
My husband and I are together 24/7, so thinking time is usually on the back burner, unless he's busy with something (these days it's word search puzzles).
I get up earlier than my husband, so that is my only alone time for thinking.
Hope you find a small window of time for you and your brain cells to have alone time. ☺️

@mm180
My goodness, I think we're married to the same guy!
I could have written this exact post.
Misery loves company.
All the best on this rocky road journey (the official ice cream for caregivers, Rocky Road! 😆).