I wish…

mommyandme (m&m)

…that those who have lost their LOs would come here more often.

Sunshine days

Dear m&m,

Me too....

 I'm not sure why more people don't?! 

Grandx7

 I also agree that it would be nice for more people who have lost loved ones to post on this site. I just found this portion of the Alzheimer’s connection this evening. I initially posted on the section for spouses and caregivers until I found this site. Maybe I’m too loquacious for it to be responded to. 

Thank you for letting me vent - I am still trying to breath!  I have not been on this site for many months and appreciate any tips you may have.

 My DH passed away almost 7 months ago.  After a brief stay in a hospital to try and get his meds stabilized, I brought him home two days before he passed, Thank God for this!  

I am trying to come to grips with my new reality and keep being bombarded with questions about how I handled things and the sadness that I was never able to have the time to talk to him about how he felt with his disease.  I have read here and other places that some patients are able to converse with their LO after learning of the diagnosis.  This was not our case.  By the time we received an accurate and complete diagnosis, he didn't want to talk about it for more than a few minutes.  He had AD, FTD and VD and from diagnosis to passing was 12 months.  As a family, we all prayed he would go quickly as he wouldn't have wanted to linger with this cruel disease.  He did tell me how sorry he was for me that I would have to take care of him and that he just wanted me to put him in a "home".  I told him I would take care of him, of course, and that was the beginning and end of our conversations regarding what was to come.

I wish I had tried harder to talk to him about his fears, concerns and feelings but I realize that he was a very proud man who took great delight and pride in taking care of me for over 44 years, as well as our children and so many in our community through his volunteering.

I know we all go through loss differently - (I have lost both of my parents, in-laws and my husband in the past 5 years) - but I just feel so very overwhelmed!  Sleep is difficult and I try to get through a day without tears.  So far, no luck.  My family and faith are a huge blessing but I have always been hard on myself and wish I could just snap out of this!  I am a retired nurse and am used to helping others.  

Thank you for any pointers and I appreciate the ability to "dump my feelings" on this site instead of my grown kids.

SDSmith

Hi, it's been almost two years this August that I lost my mom to Alzheimer's and it's the first time I've been back on this forum. I came across your post on why people who've lost loved ones don't come here more often. I don't really know if I have an overall general answer for that but for me personally, for a time I just wanted to be far, far away from this disease and help my dad heal from the loss. He hung on to mom for so long that we almost lost him too. A man who loved his wife for 60 years had physically and mentally been broken down from her constant screaming, non-sleep, hallucinations, anxiety, undressing in front of others, refusing to take medications and the last straw ... trying to kill him. After finally getting past "til death do us part", he decided to put mom in a home and she passed 3 months later. The home we put her in, was a very nice facility and mom had wonderful caretakers who also went through the nightmare of caring for her as she tried to escape every chance she got. Once her eyes turned completely black, they knew they were in for a fight. We were all so exhausted and I guess afterwards, we just needed a break from even talking about Alzheimer's. As we got the news that she passed, my dad, brother and I just sat in the living room staring at each other with no emotion at all. I think for us, it was a relief that she had passed. It's not that we didn't love her or that we wouldn't miss her. It was the fact that she was no longer suffering and now we could move forward and heal. We drank a beer that night together, made phone calls and went to the funeral home the next day. Over the last 24 months, my dad has gained almost all his weight back as he was down to 125 pounds. The stress nearly killed him. He sleeps now, he fishes and camps with my brother. He still has my moms beloved dog who sleeps beside him every night curled up in one of her shirts. Yes, the dog grieves too. He gave me her wedding ring and all the love letters they wrote to each other in 1960 while he was stationed in Japan and when I'm missing her, I just pick one up ... it still smells like her :). Things are good and we go together to visit her every now and then. But the peace for us is that she is now in Heaven and she no longer suffers. My worry? Every woman on my mom's side of the family has passed from Alzheimer's ... when is my turn and how will my family deal with me...........

mommyandme (m&m)

I’m glad to hear your story and that you and yours have some peace and comfort as you continue moving forward. Life is hard a lot. I know we have to do some planning for our later years, but other than some legal paperwork and sharing my wishes with those likely to be alive to handle me then, I really wish to only worry about things in the present, as well as enjoy them. Who knows what tomorrow brings. Thanks again for sharing.

ElCy

I agree. It’s so very hard. I know it’s best for my DH that he is no longer suffering with this horrible disease but I miss him so much. I even miss the person he became.

SDSmith

Thanks for your comments. You're right, life is hard. My mom and I didn't always get along. In fact, she was difficult to live with way before the Alzheimer's kicked in. But you know, time changes things and when she was diagnosed, I knew that I needed to pull up my boot straps and be the bigger person in our relationship. I decided I wanted to really get to know mom before she didn't know me anymore. Wow, the stories she told about her childhood and the hurt, disappointment and heartbreak she experienced at the hands of her father. I never knew about that stuff. What it did was bring us closer and made us stronger and the stories helped me understand who she was. I'm also getting so much out of reading her love letters to my dad. They fell in love through writing. They wrote for two years and never met until he came home from Japan. Poof, 2 months later they were married. I can just see her laying across her bed with a pen in one hand and looking out of her window just thinking about what to write. Hundreds of letters and it makes my heart happy. I miss her deeply and my heart aches knowing I can't pick up the phone and call her. She knew me until the end and I will treasure that forever. Thanks for letting me ramble. Peace+ to everyone who cares for a loved one with Alzheimer's...

JeriLynn66

Mommyandme,

Having lost my DH to cancer in 2020 I assumed care of his Father with AD… that’s how I wound up on this Forum.

For the first year after my husband died, I wrote to him every day.. about how I missed him, things I was struggling to manage without him, his Father… neither of us realized how far his Father had already traveled down this AD road.

And just today I’ve begun to write to him again… about his Father.

Rick4407

Hello M & M. I followed your posts and various "productions" for several years. My DW died in April after 7 years, I kept her home, as was her wish. She died at about about 10AM, I and her children were with her. She had been a speech pathology college professor and dedicated her life to helping children. I still miss her terribly but always was very happy that I was keeping her at home. I was difficult but we managed and I felt both useful and like I was keeping a promise.

I do stop in here occasionally and read, its always a sad experience, new names and the same problems many here have faced before. I'm still grieving but I guess at 76 that's pretty much a standard thing for most of us.

I spend my time keeping busy, very busy. Initially settling the "estate" items, updating accounts etc. After that I dove into reestablishing some sort of social network. Between covid and then advanced stages of dementia for my DW I was pretty isolated. Re-establishing friends and a light social life has ben my salvation.

I now have two friends who have been dx'd with Dementia so I'm spending a little time with each of them. At least an hour a week or so to let their wives have a break.

Checking back here is always sad but it's also looking back at a "mountain climbed". It was very difficult but I got through it. Rick

mommyandme (m&m)

https://alzconnected.org/discussion/comment/182961#Comment_182961

Thank you for sharing.

abc123

Hello everyone, this is my first time back to the boards in a long while. I'm finding it tough to find my way on the new system. LOL! What a surprise.....NOT.

Is there a page for Parkinson's Disease?

Looking forward to reconnecting with old friends and making new ones too! Just have to find my way around this new system.

Sincerely,

Susan

abc123

LadyTexan

Hello friends.

I have been away for a while. Dear husband Jesse died 4/5/2022.

October 11th would have been our 11th anniversary. Jesse was a wonderful man. I am grateful to all of you for supporting me as I tried my best to navigate the dementia journey. I miss him beyond words. As awful as the dementia journey is, I am grateful that Jesse and I walked it together.

LadyTexan

DH Jesse and I on our wedding day 10/11/12.

Jeanne C.

@LadyTexan that's a beautiful picture- you can see the joy.