@tuckerliko Welcome to Mayo Clinic Connect! I’m so glad that you found this site. Members on MCC share their experiences and what works and what doesn’t. Since no one on Connect is a health care professional, we cannot diagnose or tell you what treatments/medications are best. We cannot diagnose or read/understand lab values—we leave that to the doctors! Glad you’re here.

@tuckerliko "my darling active capable husband" are words I would have used to describe my husband prior to his MCI, and then ALZ and Lewy Body diagnosis. You are in the early stage of this journey and it sounds like you are doing the right things at the right time. I would tell you to enjoy everyday with him as time will continue to take away more and more of his abilities. Is he still driving? Is he able to be left alone while you are out? Everyone's progress in the disease is different. Some are faster than others. Year three of the original diagnosis (I saw problems a year and a half prior to that) is when I started to see real changes, I had to take over all financial responsibilities and major decision making. I also had a durable power of attorney put into place. He had to stop driving, not because he wasn't a good driver, because he was a very good driver, but because of the change in reaction and thinking time, we couldn't risk him being in an accident and someone getting hurt and him being liable. It was also about that time that he started having severe paranoia to the point I could not leave him alone any longer for fear of what he might do or where he might go. This year has been a hard one as his communication skills are changing. He's lost a lot of words so we use a lot of hand signs and I ask a lot of questions...I can tell others are uncomfortable trying to talk with him and he knows it too so he doesn't really try to have conversation with others. It's hard to keep him interested in much of anything. He watches very little TV, he doesn't care for puzzles or playing cards anymore, I've tried the fidget toys, he's not interested. His world has become so small. He spends his days sorting his things or what is left of them (he is continuously bringing me items and clothes that he no longer wants) and hiding other things all over the house so "they" won't get them. He does attend a church supported Respite Program twice a week now for four hours each day (he never wants to go and I have to use another excuse for getting him up and ready, but once there he enjoys it), and that has been a blessing for him and for me. They have wonderful volunteers to be with the participants and the programs are great. He does things he never would have done before, painting, crafts, there's singing, exercise, games and he is with others experiencing the same changes that he is going through. It gives me time to get out and breathe without being on alert, to run errands and enjoy an occasional lunch with friends. My heart is so heavy for this at one time, outdoorsman, life of a party, entertainer with stories, helper of anything that needed to be done, active with our church and friends and family man...and I miss him so very much...My advice to you would be to take each day as it comes, roll with the flow, try not to argue, redirect or walk away, try to keep the atmosphere calm and happy. Make sure he gets rest throughout the day. Mine has gotten to where he needs a good afternoon nap or he gets cranky before night. Go out together, for walks, or to eat, try to keep him involved in life, but at the same time keep it simple. My husband cannot handle busy and complicated. Let him know always that he is loved and that his life matters. Do I manage to do all this everyday, heck no, and we have had some rough times because of it, but everyday I am learning more and more how to make life manageable. It is a very hard journey and you never know what each day will bring. Be prepared for the unexpected. There are a lot of good informative books that you can get that will help. I suggest you start with "The 36 Hour Day." I would call it the Dementia Bible. It will help you understand what is going on and give you an idea of what is to come. Keep your family in the loop and hopefully they will want to help you in anyway that you may need them to. Most importantly, stay connected to Mayo Connect. There are wonderful people here willing to share from their experiences and willing to offer hugs and encouragement when life is hard. I hope this has been helpful to you. God be with you and bless you and your family.

@tuckerliko Likewise. The changes. . . I never dreamed this would happen. Lonely as he is “gone” a lot. It’s often like I am just one person here.