so sad

JDancer

Went to a lovely party with my DH last night. A dear friend's husband turned 70. We drove to another state to attend, so there was not the option of leaving him at home.

At one point, I became overcome with emotion and stepped outside, practically in tears. Seeing my poor DH, so lost, among so many happy, healthy people broke my heart. This disease sucks.

charley0419

My feelings exactly…. This illness SUCKS!!

Cecil Jones

I'm sorry for your pain. I did almost the same thing at my son's house for Christmas Dinner. I was thinking this is probably the last Christmas she'll be here...somehow I caught myself. I know she could live many more years but I know I'll never have what I had. You are right, This Disease Sucks.

M1

JDancer I'm at least glad that you made the effort and went, and I hope that your friends were supportive of your both being there. They can't compensate for what's happening to the two of you, but I hope it was in some measure good for you to socialize and be with others. Very, very important for your own sanity. Or am I putting too optimistic a face on it? I think it's important for all of us--me included--to remember that life goes on and that the world we face is not the norm.

Kibbee

I think sometimes that because we spend so much time alone with our PWDs, and have experienced their progression in small increments, we may not in every moment be thinking about how changed they have become. They are just our loved PWDs and we go about our daily lives with them, making constant little adjustments to make sure their needs are met, and doing our best to deal with our new “normal “. But put them into a larger social setting and suddenly we are faced fully with the contrast between our PWD, and those our age who are unaffected. These flashes of reality can be heartbreaking.

Nowhere

I feel for you. Yes, I do this, too. It shows how much you love your husband, I think. The first time I did that was at a friend’s daughter’s wedding. I couldn’t stop the tears shortly after an acquaintance came up to me saying my husband had been happily chatting with her, following which she approached me upset informing me he had no idea where he was. She knew he had Alzheimer’s so I don’t know why she was so alarmed. She had zero tact and probably no experience. She could have easily said, let’s go find your wife. I had my eye on him across the room the whole time. In the early days of his disease we went to many out of state weddings. He never knew what city or state we were in, but he enjoyed the gatherings.

Tears well up frequently as it’s part of the slow marching loss. He’s in a home now just minutes from me. We walk in nature when weather permits and stores when it doesn’t. We’ve started attending the church next ti his facility. I sit with him at his dinner and tuck him into bed each night. He can’t think anymore to express himself, and I’m grateful his social graces are intact. There is beauty in his will to continue on. He has anosognosia (sp?) - doesn’t perceive anything is wrong with him) and so his smiles come easily. During the middle passages of AD, he sensed something was wrong not with him, but with me. Those were the worst years. Now he can’t assemble thought to do any reason or higher order thinking.

I know his death is going to take a huge piece of me with him. We’ll be married 50 years this spring.

darcytg

Jdancer,

Heartfelt hugs to you.

Tremendous grief on this journey. We who are care givers grieve double, as far as I can tell. Glad you shared your sadness with us.

I feel less alone knowing you all are out there finding the ways to love and lose, too.

Dio

Hugs and I, too, feel your pain. Last Christmas at our family gathering, DH had a manic episode. The ugliness of this disease on full display. Family members knew he was afflicted but never eye-witnessed his radical behavior. They were quite shocked. I cried for the loss of the healthy DH and all the losses associated with this wicked disease, plus I was full of self-pity back then. But I have a very loving family who rallied around us. Although this road is still a very lonely one for the caregiver, it truly helps to have a good support system. I wish that for everyone...may it be family, support groups, church, community...!

Denise1847

https://alzconnected.org/discussion/comment/192970#Comment_192970

You are so right. We went to dinner with a small group of our friends. They were talking about trips they were going to take, plans that they had for the new year. I felt like was on the outside of my past life looking in. I know we should socialize, but it is very difficult facing the stark difference between our lives and those of our friends. I really feel like my life is over because of the toll it has taken on my mental and physical health. I feel at least 10 years older.

Brokenhearted in Illinois

Yup - me and DH invited to New Year’s Day gathering. I feel fearful. The hostess’s Mom has Alzheimer’s so she is understanding. But most people are not familiar and do not expect to see it in 73 year old DH. We will go as the socializing is still enjoyable for him. Maybe we will just go for one hour.

Kibbee

@Denise1847 Socializing actually became easier and in some ways more enjoyable for me once DH totally withdrew from all social activity. It is less stressful for me since towards the end of him doing couple things I could tell it was becoming less fun for him, plus I always had to keep an eye and ear on him because I never knew what he might say or do.

Now I go out mostly with just my women friends, which is much easier and more relaxing. Occasionally I get invited to mixed group activities, and I make the effort to attend since I do appreciate being included. At this point all my friends and relatives are aware of DH’s situation and are very understanding and considerate.

JDancer

I posted my story this morning, before our long drive home.

I'm overwhelmed and grateful for all the thoughtful, loving responses. I probably struck a chord because so many of us attend gatherings during the holidays. The support of this group is one of the few things I can depend on. Thank you so much!

Denise1847

https://alzconnected.org/discussion/comment/193031#Comment_193031

Hi Kibbee, I am hopeful I will be able to get out more. My DH is such a proud, stubborn man, so he refuses anyone coming into the house to sit with him while I go out. I suspect eventually this will not be an issue for him. It has been terribly depressing for me for 3 years of being fairly isolated, unable to go anywhere without him, go to the gym or do anything for myself. It really makes me both depressed and angry. Thanks for the encouragement. I am so tired of this daily grind.

M1

Denise i had the same issue, ironically my partner's unwillingness to accept any help at home was one of the factors that led to her placement, which was also the last place she wanted to end up. Shot herself in the foot in that regard, so to speak. I tried several times to have conversations with her about accepting help at home specifically so that she could stay home, but predictably that didn't work, the anosognosia overrode everything. And she gradually withdrew from almost all friends-plus her deterioration coincided with the worst of the pandemic, so that we ended up very isolated indeed. I couldn't take her anywhere because she couldn't tolerate a mask. At least now there is the possibility of social gatherings.

tetwoman

Hello everyone - I don't post very often, but this thread really got to me. Christmas Day we went to our son's home for the day and dinner. My husband sat without talking, with a look of discomfort for the bulk of the evening. At one point he looked at me and said "do you remember me?" I can't write this even now without breaking down. Sometimes it's hard to remember him as he was - brilliant, witty, caring and loving. But that's part of our job too - isn't it? To remember the people out loved one were and how they deserve to be remembered.

I get a lot of comfort reading your posts. Thank you all

Mimi50

https://alzconnected.org/discussion/comment/192970#Comment_192970

With my husband our son is 26 years old and lives close by. But he doesn’t see my husband everyday. So those small adjustments that I made as far as his progression go. I have time to make changes. For Joshua it hits him all at once. I recently went to the eye doctor to get new glasses. I was having little pain behind my eyes and changes in vision. They think that I might have glaucoma. My husband doctor has said it is safe for my husband to drive. But that is not going to last very long. We need me to be able to drive. I will 51 in January. Our son and my parents don’t know yet. Besides me being able to drive. How can I help him and keep him safe if I can’t see. Not mad that I might have problem. The timing stinks.