EOAD caregiver of spouse

Jhelseth

 Although I am not new to this forum this is my very first post/comment. I am also dealing with a spouse with early onset Alzheimer's. I saw symptoms for years but he absolutely refused to see a doctor. He said it was "typical aging" memory loss. He finally went into see a neurologist at my insistence and had testing last March. This past summer after all testing was done he was diagnosed with Alzheimer's. He just turned 65 but I have been dealing with his memory loss and cognitive decline since he was in his 50s. He is still in the early stages  but I can see progression. 

4 1/2 years ago we moved away from a suburban area and away from our kids and grandkids to build a house up north in the woods and by a lake. This was before we knew he had Alzheimer's. This was our dream, to build this home in the country. It was our retirement home. now he doesn't seem to be able to get anything done in the yard or house. Every time I suggest hiring someone to do things he gets extremely angry. I think it's denial that he can no longer do these things on his own. Physically he is able, cognitively he's not able to put all the pieces together to get things done.

 I am angry all the time. I am resentful. I am sad and lonely because we are away from all of our friends and family. Even if we were to move back to the cities, there was no one there that would really be able to help us much for various reasons. I am mourning the loss of the future we had planned.

I would love to be able to connect with others dealing with EOAD. 

Just an added note… I do a lot of voice texting because it's quicker. Please ignore any typos, grammar errors, or weird punctuation.  

KathyF1

My husband is 69 and he too developed Alzheimer’s after we moved to a 100 acre farm and built our dream home. We’ve been in the home 6 years and now have the farm on the market. So I know exactly how you feel. Our biggest problem here is the isolation. We bought a smaller farm near my mom and sister so I can have support   We have horses and dogs and I’m not willing to give up the “farm” lifestyle, but where we are now is not good for either of us. 

I know how exhausting it is to even think of moving especially since you just built your dream home. But I do think being near friends and family is vital to your mental health when dealing with the stress of caring for someone with Alzheimer’s. Personally we have very few friends here and developing new friendships isn’t possible. I’m sorry you have been blindsided. I feel the same way. I made the choice to give up this beautiful farm. The trade off will be having support. Do you feel that if you moved back near friends/family that they would help you if you were in need? 

CStrope

My husband is 68 and was officially diagnosed just over 2 years ago.  Symptoms were there for several years prior, but like you know, it's not worth the constant arguing trying to tell them that something is not right.  I am 8 years younger than him, so I'm still working full time.  We never got the chance to get to any of the things we had planned to do when we retired, now I know that they will never happen.  

I was very resentful for a long time, now I think I'm just sad.  

Jhelseth

Kathy- If we moved away from this home now I would be more miserable than I am now. This is my peaceful place. I go outside at night to look at the stars and hear the owls. That is how I calm down when I am stressed.

I would have people to talk with if we moved back but not really anybody that would be able to help me with my LO when he gets into later stages. We are only 1-1/2 hours away but nobody comes to visit. I did recently join a small country church just down the road from us so I hope that helps me connect with other people. But it still doesn't reduce my anger, frustration, and sadness. I don't want to say I will never move back to where I came from, I'm just saying to do it right now, would make me extremely unhappy. I don't think I'm at that point yet.

 I do see a therapist so that helps. I guess I'm just venting today. It was a rough day.

Jhelseth

CStrope wrote:

"I was very resentful for a long time, now I think I'm just sad."

RobertsBrown

Like you, we moved away from family onto our farm.  I was well aware of my gals early-onset, and the move was intentional.  I wanted her to get her dream farm while she could still enjoy the win.

What I want to tell you is not pretty.

Things happened very fast for us, and the workload on me shot up too fast for me to react.  The results included involuntary retirement, massive loss of income, loss of business equity, and a crash course in full-body nursing and daily disaster recovery.  It was emotional.

I had to learn to let it all go, emotionally, and realize that I had to buck up and accept that my choices changed everything. Grief on this scale can be paralyzing, and that's just what I could not let happen,

If I were to be so bold as to offer advice, it would be to face the fact that you have very serious problems, that things are likely to happen much faster than you think, and that nobody is ever prepared for this experience.  Try to build an intentional life.  Daily routines, regular talks with anyone that will take your calls, and as was said on this board, realize the cavalry is not coming.  Speaking only for myself now, I had to learn to abandon all hope, and still retain compassion and empathy.  I had to grow some bark.

Jhelseth

RobertsBrown - Thank you for that information. I'm so sorry you had so much happen so quickly.

I am thankful every day that we moved to the country so at least we had some time here while he could enjoy it. He still loves it here, just doesn't get much done. I am starting to hire people to do the things he can't. He gets angry but quickly forgets. 

He has been retired for years due to a disability unrelated to Alzheimer's. I am self-employed and am now working very part-time from home. All the legal pieces are in place. I guess now I wait....

I have been making a very conscious effort to connect with people in our new area. That helps.

RobertsBrown

We have had a lot of good years on this farm, and fully expect to live out my days here.

I have had to hire help for some jobs and farm work, and the help seldom does the quality of job I want done.  I agree with your husband...I get cranky too, but mostly because I can't go do the work myself.  Still, I would rather have a tough life here than a tough life most anywhere else.  Well.....maybe a 100 acres on the coast near Santa Barbara.....

Jhelseth

Santa Barbara sounds peaceful and relaxing!

Gig Harbor

You might put feelers out to local churches, doctors etc to see if there are any Alzheimer’s spouses out there who have or who want to start a support group. It is huge when you can develop a network of local friends who know just what you are going through. Good luck.

Jhelseth

Gig- Good idea. Thank you.

KathyF1

The fact that your husband is happy there is a positive. My husband is happier when he’s around people. Good for you that you joined a church. For me that is critical, in fact the friends we do have here are from our church. And- I completely understand how you feel about the peace of farm life. If this farm doesn’t sell for a while my intention is to go back and forth from our new house as long as we can. (5 hour drive). Farm life is part of who I am. The new place is 20 acres- I’m grateful for that but having 100 acres is extra special. I think you’ll know what to do or not to do when things progress. So far my husband is progressing slowly. This is a scary journey. God Bless, you are in my prayers.

Jhelseth

Thank you for the prayers Kathy. The idea of keeping this home and maybe getting a small place closer to some family has crossed my mind. It sounds like you have a good plan. There are so many uncertains with this disease and it certainly is a lonely road to travel.

Prayers to you as well.