New here and living Groundhogs day.

Potsie

I am new to ALZ Connected but not to living with it. It is hard to put into words what this lousy disease has done. My DH was diagnosed with EOAD in 2017 after doctoring for many years and not understanding different things that were going on. He was 62 when he was diagnosed. I think he should have been diagnosed in 2014. As you all know, before you know what is happening it causes all kinds of stress. His mother passed in 2014. He seemed withdrawn and not interested in sports and other things he had been involved in. My mother was ill at that time and I became a caregiver for her. I was away from my DH a lot of the time for my 12 hour shifts at the hospital and caring for Mom. I had to sleep (try to sleep) on the floor next to her bed. That alone was torture. During this time I would go home to make my DH supper and tuck him into bed before I had to go to care for Mom. I promised him that when this time caring for Mom was over I would make it up tp him. Mom passed in April of 2015. At that time I couldn't figure out how to get my DH out of his slump and I was grieving the loss of Mom. I felt at a loss. Our relationship was suffering. DH didn't talk much to me and when I tried to talk to him he acted like he didn't know what I was saying. When I was so sad and needed his comfort he would tell me that water was coming out of my eyes. Total confusion. Almost two years of  this getting worse and he was finally diagnosed. At that point I was devastated and didn't have a clue what to do. "Mom where are You, I need you!" He had been struggling with his job, making mistakes and needing help with all the paperwork. He was tricked into signing a letter of resignation and was angry with me for informing his boss that he has AD. He missed his job so much and would drive around everyday looking for a new one. no one would hire him. Everyday he just needed to be on the go. I gave up my job to care for him. We would drive an hour every other day to go to the casino for a 20 minute stay. I would go visiting with him, take walks, do whatever I could to help him. It was weighing heavy on me. Sometimes when I would be sleeping he would get up in the middle of the night and drive somewhere. My oldest son helped me dismantle his car. I hated doing that but it needed to be done before he hurt himself or someone else.  We have six adult children with jobs and young children. Everyone would tell me that they need to step up to the plate and help me. They all helped in their own way. I never wanted to add stress to their lives as they were all grieving the loss of their dad as they knew him. I plugged away as long as I could. I tried to get him into an adult daycare. No one would take him. He was too busy. I was going crazy. I called the social worker at my medical clinic desperate for help. A Geriatric Psych unit was recommended. I said ok. It was horrible and I was told he would be there 7 to 14 days. I called to get him out and they told me all the reasons he needed to stay. He was there 41 days. I believe it was torture for him. During this time I had searched for a MC facility to take him. I was able to get him in one near to my home. He was covered in feces when he arrived and was so drugged. I am soooo sorry for that. I have so much guilt. He was in that Mc facility until January 11 2021 when he needed to be moved so he could be in a place with advanced care. I don't know for sure what stage he is in. He is non verbal, totally incontinent doesn't transfer well and mostly sits in a recliner or his bed. Sometimes he can feed himself. I get to see him every day now and just love him. I have not had much for support. Sometimes I wonder where all our friends went. I was in a support group for a short time before Covid but our RN that led the group passed unexpectedly. I couldn't go anymore due to my DH's AD. My DH's Hospice nurse gave me the information on ALZ Connected. It is what I need. I have been so lonely and don't know how to fix it. I am sorry for all of you going through this. I think I am finally accepting the fact that he is never coming home. Thank you for listening.

Mint

Hi Potsie,  Want to welcome you to the forum.  There are many kind and helpful people here who I have gotten much help from.  Hope you do too.

You mentioned the loneliness.  That feeling is familiar to many of us.  There is a thread here titled Just need to talk to my friends.  This is a very long running thread started by a lady who lost her husband and lives in a fairly remote area.  You are welcome to come sit on the porch and talk about anything.  Some of us are living with Dementia presently and others have lost their loved ones.  We talk about cooking, animals, dementia, just whatever is on our mind.

Would encourage you to reach out to your friends.  Call them, and when Covid is less of a threat start doing things with them, your children and grandchildren.  You have been dealing with a lot of things and now it is time for you to take care of your self too. One thing I found was, that even with my sisters , can’t talk too much about the dementia thing or they won’t want to be around you .  Was disappointing to me that I couldn’t vent sometimes but I found a place to do that here.  

Hope this helps.  There will be many others along soon with more experience than me.

Ed1937

Potsie, welcome to the forum. Sorry you are dealing with this too. You have been through a lot. More than anyone should have to be. I'm sure this forum will be good for you. People here understand the problems and emotions. Give it a chance, and you will become comfortable in short order.

Potsie

Dear Sayra and Ed,

Thank you. I hope to find friends here that I can seek advice and share my thoughts with. It is already amazing to read the posts of others with similar stories and the understanding that everyone has. I hadn't read up too much on AD because I was living it. Now with my DH in the Advanced Living facility and I know he is safe I think I can relax a little and do the research I need and want.

LizG55

Hi Potsie.

First of all I am so sorry about everything! Your suffering as well as his sound a lot like what went on with my father.. .and I will always feel guilty that I couldn't protect him more for a very bad health care system here.   He suffered a lot and I still cry about it, He's gone now 15 years.The help was the worst . I could never imagine what I saw go one and I passed a blood clot from all the stress of the whole thing. I miss him every day and always will for the rest of my life. 

Try not to let guilt consume you, it just does not good except to torture yourself. My husband now has dementia and I am his sole caregiver.. I have very little time to myself as I have had to take over everything and care for him too.  You are among friends to vent and to not feel alone with all this going on. It's really overwhelming and heartbreaking, I know. I feel like a vessel for caregiving not even a person most of the time. 

Anyway... we're here for you with love and support....

Gig Harbor

Hi Potsie,

Welcome to the forum. Several of my friends who have husbands in memory care actually made deep and lasting friendships with other spouses who were also visiting while they were there. There are lots of other spouses like you out there and maybe you could find a way to meet some in your town. You could form your own support group. I know that sounds overwhelming but those new friends will understand more than your old friends ever could. 

Potsie

Thank you LizG and Gig H for responding. It is so amazing how all these wonderful caregivers are so willing to help out the next. I hope I can meet others within my community. I have just recently felt the need to connect with someone other than my DH and my kids. I need to make a life for myself now. This is my first experience living alone. I was married at 19 and I was still living at home with Mom. I have had to figure everything out since my DH went to the MC facility. Now I need friends again and I am going to find them. Thank you so much for advice and caring words. I feel the support.  

Ready to reclaim my life,

Potsie

aod326

Hi Potsie. I'm glad you joined because it can be a very lonely position to be in. The trajectory and situations you've explained are very similar to DH's, albeit DH 's progression has been fast. DH retired early because of the mistakes he was making in court. After a few months of not working, he said he wanted to go back to work. Initially I discouraged him, because I didn't want him to get rejected, but after a while I let him go through the motions. Sometimes I was lighthearted and said "Until you can remember what your job was called (attorney), you can't get a new one"! That was before I realized the the disease had taken away his sense of humor.

I agree with so many of the things you've said: the disappearance of friends, the recognition that this is hard for his adult children to witness and also the experience in geri psych. I get quite down when I see so many people here who had good experiences with geri psych. For us, DH went in walking, talking, in fact being very combative which was the reason for him going in. He came out drugged to the eyeballs, unable to stand, talk or feed himself. I'm not sure he ever returned to his baseline after that, even though we reduced the drugs as quickly as was safely possible.

It's easy to say, but please try not to feel guilty. You were doing everything you believed was the best for him, including listening to expert advice. If you look back at parenting, I'm sure you see things that you feel you could have done better (which really = differently), but I'm sure you did everything for your children from a position of love. It's no different with DH.

Keep coming back to these boards - you'll get lots of support.

Potsie

Hi aod326, Thank you. The psych unit was the worst. He was treated poorly there. That is the one thing about this journey we would like to have done without. 

Today during my visit with my DH he did something he hasn't done before. He was eating chips and he stopped and looked at me, pulled my mask down and fed me some chips. My heart melted. Something seemed different with him. It seemed that he understood more. It was strange but I will take it. Usually it is me feeding him. It was a good visit.

I appreciate all the support!

LizG55

Potsie.. we are here for you Hugs!