Happiness Turns To Sadness

Biggles · August 2

In a past life my DH and I spent years sailing around the Whitsundays and along the east coast of Australia. After DH was diagnosed with VD and aphasia I didn’t think we would ever sail again, but we have found Sailability, a wonderful organisation made up with the kindest and most understanding members. I am on the committee and I am a skipper taking compromised guests sailing. It’s fabulous and very rewarding. DH is taken sailing by other members, this gives me a freedom break from my caring role . They have a lunch at the end of each month so a very comfortable social activity as well. After a great sailing morning, we were sitting at lunch, my darling DH wanted to join in the conversation he couldn’t get the words out and I couldn’t latch on to his thought pattern. My heart beat harder as I helplessly watched him, my eyes welled up, my breathing laboured and I had to turn into his shoulder a way from the others as the tears rolled down my face. My DH had no idea I was crying but I felt so miserable and so alone, the pain of our situation struck me hard.

sfrsythe · August 2

Oh I’m so sorry.

I have heard of Sailability here in Boston. I’ve heard great things about it. I’m glad you had the freedom feeling, even if short lived. This disease just breaks our hearts at times. Blessings be bestowed on you for every tear shed.

annie51 · August 2

I always found that random things could trigger those tears at any time. I wasn’t always able to hide them from my DH so I admire your strength at doing that. So sorry you had this gut punch but very happy that you belong to such a wonderful organization!

Sending a big hug.🫂

Ed's mom · August 2

I can't hide tears lately, every day at some point. 4 am is the worst, I'm sleep deprived because it's my private crying time and then we'll, might as well get up for some quiet.

At the third repeat of a story yesterday she wasn't getting our set up signal. Finally I asked her to stop, my sister was the only one there. She was angry, still is. My sister said later, "if her story makes her happy I'm happy to hear it again". I am going to try to remember that, not much makes her happy.

Now to go wipe my eyes again today.

persevere · August 2

I have noticed lately my wife, who has total aphasia, will try to actually say something. Many times when someone else is around. I don’t know whether to be joyful or sorrowful. Joyful that I’m hearing something that sounds like words or sorrowful that she is struggling to speak. This is the disease of dichotomies. You are doing a great job Biggles.

Maru · August 2

I see more and more of this "getting lost" in , language and thought processes. It breaks me up for him. He has a high IQ, held high positions in his work…it's just sad. He is only in early middle stage. Will this become so common that I will no longer notice and care? I don't want to just be his caretaker, I want to still be the wife that has stood by him and supported him all these many years. All this to say, I get your sadness, your pain.

jgreen · August 2

What a roller coaster we are on, @Biggles! The extreme ups and downs seem to come in waves.

I am so pleased you have found a group of caring and patient friends. It sounds like your DH enjoyed himelf in spite of the inability to speak. I am sure his eyes spoke volumes that others appreciated.

And your words “fabulous” and “very rewarding” show me that you had some good moments as skipper. I hope you will continue to get out and do some things you both love.

Sending you hugs! 💝

Bailey's Mom · August 2

Oh, Biggles. That is heartbreaking. DH won't go to social gatherings anymore because he is embarassed and doesn't want anyone to think that he's 'crazy'. I try not to put him into those kinds of situations, because he is so uncomfortable. You have such a good group there that he might feel comfortable around them regardless.

Biggles · August 3

https://alzconnected.org/discussion/comment/278940#Comment_278940

persevere it’s so sad but I think we are all doing what we want to do, what we have to do and what we can do with love, care and perseverance

Biggles · August 3

https://alzconnected.org/discussion/comment/278949#Comment_278949

hugs so appreciated 🤗

Biggles · August 3

Thank you for sharing and for your kind understanding words. It is a roller coaster we are on, the pain is excruciating and the loss almost unbearable.

Lethe · August 5

I get those unexpected tears as well. A few days ago it was when he couldn’t remember how to tie his shoes. It is excruciating seeing the one you love struggle. You are such a loving presence to him and the sailability community.

White Crane · August 5

Biggles, I'm glad you found sailability. It sounds like a wonderful program. Yes, the tears come at unexpected times and of their own bidding. It's so hard for me to listen to DH trying so hard to communicate and not making any sense at all. I try very hard to support him and piece together his meaning. Sometimes I succeed and sometimes not. No matter which it is, I still try to keep a smile on my face for him and let him know I care for him and love him. Sometimes that is all we can do. Sending big hugs.

Biggles · August 9

https://alzconnected.org/discussion/comment/278970#Comment_278970

Your DH and you would be welcome, cranky or not, they are an amazing group of caring and understanding people.

MariaN26 · August 9

https://alzconnected.org/discussion/comment/278939#Comment_278939

I know what you are saying. I cry in the shower and cry myself to sleep. I get upset with myself if I got irritated with my DH during the day. He gets confused easily, asks the same questions over and over, tells me the same stories over and over, and gets irritated with me from time to time. I have started saving special treats for moments when we are both getting irritated and I am starting to cry. I give him the treat and sit with him so we can have a quiet moment to just get calmed down. Then everything will be better for a few hours. Sometimes I wonder if he is repeating his story just because he wants to have my attention and wants to talk to me and just remember that he already told me that story. I am just quicker to turn to tears lately. I just miss what we used to have. Now I am grateful for any moments that we can do something together. He does like going out to do things so I do take him places. He seems better when I can take him places or go on vacation with the family.

Happiness Turns To Sadness

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