First time posting

Kat63

I am on this journey with all of you caring for my DH who was officially diagnosed with ALZ about 3 years ago but as it goes I have known he had this disease since 2015. My husband is 75 and I am 66, and we have been married for 39 years.

I believe he is in the beginning of stage 6, as I help with grooming and often assist with appropriate clothing, buttoning, belts etc. During the afternoon and evening he is constantly moving, rearranging things, which mostly is tools and fishing items, and occasionally his closet. I have learned to let him move whatever as it keeps him busy and in most cases if something is moved where it really shouldn’t be, he usually moves it back the next day.

Two weeks ago I started having a caregiver come to our house twice a week for couple hours each. Reason is we have been attending our grandson’s baseball tournaments, but at the end of the spring season DH was not enjoying them and in fact would become upset if we had to wait between games, to where I had to leave and take him home from one tournament and didn’t even take him to another. I always want to atten my grandsons sporting events, so having a caregiver gives the option of him not going. He is doing fine with the caregiver and it is giving me a break from being the 24/7 caregiver. So I am “working” on building a life for me!! I have been blessed to have my DH and wonderful life, amazing marriage with him. From the day we met he has been my world. Two years ago we moved from Ohio to Texas to be close to our daughter and her family. My time here has been caring for DH, so haven’t really done anything without him. I’m surprising myself, but while caregiver is with him I have started working out at the local gym and have reached out to a couple of neighbors to do outings. Have some feelings of guilt and sadness though, as know I’m starting to build a life that will be without my DH. Not what I wanted but trying to handled the hand I’ve been dealt.

Reading the posts here, I know you can relate. This site has already helped me just knowing I’m not alone dealing with all the high and lows that come with having ALZ. Thanks

tgeno

You are doing great! You can't take care of your DH without taking care of yourself. Love your attitude. We deal with the cards we're dealt. Learning to deal with our challenges makes us stronger and makes dealing with our challenges easier.

Rocky2

Kat63, Welcome. I'm glad you joined, but sorry for the reason that brings you here. It seems as though we have some similarities. My DW and I have been married for 41 years. She was diagnosed with EOAD 4 1/2 years ago at age 62. She is now, by my best estimation, at stage 6 and just moved into a memory care facility last week.

I applaud you for your wisdom in trying to take care of yourself as well as being a great caregiver for your DH. No two situations are exactly the same. That said, there are many things that we are able to share and to learn from one another. I know you will find listening ears, open hearts and some sage advice from the members here. I hope that you will also share your thoughts regularly with us so we can support you and learn from you.

Its great that you have family support and have added a caregiver to your team. This journey is not best done alone. You said that you "Have some feelings of guilt and sadness though, as know I’m starting to build a life that will be without my DH". I can relate, especially with just having moved my DW into memory care. I rely on support of friends. But more so on my God to help me to work through the daily challenges.

I pray that you will find strength and wisdom in the journey ahead. Again, welcome!

Tom

Kat63

Thank you for the responses. Rocky2, we certainly do have similarities and appreciate all of your comments. Yes I have been praying for guidance, as so true we cannot handle this without help from our family, friends and and faith.

M1

Welcome Kat. It's very, very hard to start thinking about--much less acting upon--a life that does not include your long-term spouse, expecially when you are fortunate enough to have had a very happy marriage. My partner and I are 15 years apart, so we have sort of always known I was likely to outlive her--but still. My son is bringing a serious new girlfriend home at Christmas, and I have been fantasizing about her seeing our home, and telling her about my partner, and thinking about what wonderful memories are here---but it's all without her, and it will never, ever be the same. Yet I know in my heart of hearts--I suspect most of us do--that the first thing my partner would tell me, if she were in her right mind, is for me to keep going, to move forward, to live; she would want me to be happy. And cared for. And loved. So I have to do it in her honor, for her as much as for me. More power to you for being able to take these little steps.

SDianeL

I am where you are also. My DH is 78 and we have been married 38 years. I have a caregiver who comes once a week for 4 hours. He calls her "my lady" -- so far I've been running errands and getting all my doctor's appointment caught up. My sister also has dementia and I visit her every other week for a couple of hours. but I'm having difficulty now with the caregiver coming because I have nowhere to go. I really need to figure out how to start my life without him but so far I can't seem to do that. So glad you are. I know it's not easy.

Kat63

It’s the hardest thing to start a life without our DHs, but here we are. It’s actually scary. I understand you having a hard time with caregiver coming as you don’t have anywhere to go. I had those feelings to and each week I have to mentally plan what I’m going to do that coming week. But with each thing that I go and do, some all by myself, or reaching out to neighbor to go do an outing, it is getting easier and I see I am stronger than I thought and it helps me mentally which makes me even better in caring for DH. It’s like most things, it’s a process. I’ve thought about volunteering at the local hospital or maybe joining a crafting group, which I might enjoy if and when I increase the time the caregiver comes. You might also see if there is an ALZ caregiver group near you. We have one but so far I’ve been busy when they meet, but hope to join this as well. Maybe think what you might want to do, or what your interests are and then see what is available near you.

Sorry we are on this journey together but hope maybe this helps.