I am back to work. I invite you to log onto the home page - www.thealzheimerspouse.com - and read my new blog. Do any of you feel as I do? Please post comments here. Thank you.
Oh, Joang, my heart aches for you, as I have been through this type of thing - twice - within 2 months: When my mother died in Nov. and my son in Dec. 2010. We made the long trip to FL for my mother's funeral, but there was no support from DH - I had to furnish the support, until we got there, then my dear son arrived and took care of him for me. When my son died, there was almost no comprehension, no loving words or arms around me. I called my priest and he and his wife came over; I called my employer and the two partners came over - at 9 p.m. at night. They stayed with me for several hours - but the one I most wanted to comfort me was not there. He was in his own AD world and even death couldn't penetrate that.
I wish comfort and love for you during this time as you try to move on with your life. That's what we do.
Dear joang I am so sorry for the loss of your father. I did not post earlier, but you have been in my thoughts and prayers. I just read your blog of alone. I have not gone through a loss as you have, but I do feel alone. Even though I have my family And our daughters were here for Christmas, I feel alone.
I have over the years had nightmares. I would wake my DH up and he would hold me. I always felt safe. Now I wake up and know that I cannot wake him. I am thankful that he actually is sleeping. But now I lay awake feeling scared. I felt alone at family get togethers even though he was there. I try to discuss decisions that need to be made with him. But we all know that is useless. I also miss having someone to hold me when I am upset and in tears off and on. But those tears and fears are because of his AD.
Know that we are here and that you are not alone. It is this wonderful site that you have made that we can come to. When I come here I know I am not alone. Thank you. And I hope you get some rest.
Joan I feel so apprehensive for you, and just don't know how to say YOU CAN DO IT. That is because, you have been in a loving marriage for so many more years than me, and I feel so beat down. So alone, and at the same time the unwarranted guilt and fear.
I missed the comfort from him when my sister died, and now, when he cries and gets so mad because I am not taking him out of the hospital and bringing him home, I miss the comfort of him seeing that I am on the verge of pnuemonia, so tired, weak, and yet trying to help him. He cannot share my pain, or help me.
I am so sorry I do not have words of wisdom, I know you are on the verge of a huge decision, and oh how I hope you can make it, and Sid adjusts well.
There really is NO pain like this ongoing one. My sister dying as she held my hand, was so much easier to take, and I do not mean that lightly. This ongoing month after month and then year after year, there just has to be a way to survive, well.
I hope for you Joan, as big as I can hope. And I am so sorry for all you others here in such pain.
Joan, i believe all of us can relate to your feeling of loss. its so difficult to lose a parent or any family member, and then simutaneously know our dear spouses are no longer there for comfort and support. double indemnity so to speak. double loss and double pain. for some of us, the 'never again' part is what hurts most. knowing we will never ever have those moments of connections with our dear spouses again. so permanent. just like the hurt of death. so in essence like reliving death over and over again. its almost inhumane the pain that we can manifest from overwhelming feelings. please take the time necessary to adjust to your loss of your dear father then tackle the issues with your sid. its ok to snap occasionally, we all do it. we are human and the stress can become so great we must let it out. take care of joan as much as possible now for a change. divvi
Hi, Joan. My condolences on the loss of your father. My father passed last March and although I miss him it was truly a blessing. His mind was completely gone at the end, could not swallow, diapers, contracture of his muscles the whole 9 yards. In retrospect I see it as a blessing now because this was- no life for them or us. the same goes for your father and Sid. This is no life for them. I too have made the decision to place my husband in the coming new year. The decision was the most difficult I have ever had to make but deep down I know it is for the best. I have tried explaining this to him but of course he does not understand and thinks I am "throwing him away." Honestly since my decision I feel better. I know it will not be easy but I have the support of friends and family and good, bad, or ugly it is what I need to do to move on with my life. For months and months I felt "stuck", could not move on, could not make a decision and was wallowing in depressed feelings, sadness and the rest. I made a decision that I deserve some happiness and am doing what I need to do to get some happiness. You too deserve happiness. Goodness knows we all do. We all have to do what will help us achieve some peace of mind and happiness. I am learning that happiness is a choice.
Dear Joan. Welcome back. I have missed you thus others since finding this fabulous site. My sympathies about your father. Yes, I too feel so alone and like you have blatant moments of awareness of that. Like on Christmas Day when invited to friends and I was the only "single" person. As you and others have said, missing that strong presence and arms of support can take our breaths away. I have cried buckets over that. My husband is in a facility and as you and others have mentioned, the time comes. They do adjust and so do we. There is something to be said for feeling safe and knowing loved ones are taken care of by others 24/7 instead of us. Peace to everyone.
You mentioned the new awareness of couples all around you and how you felt the single status again after 42 years...I have been aware of this for some time...I remember when my aunt was going through this and we were running errands, she having to do things her husband always did and she mentioned that she was a widow with out really being one...we all are.
I think this has been the worst holiday season form me since my tour overseas when I was in Okinawa, my mom said " lets just forget Christmas this year since you are so far away....after I had gifts ready to send....with the lonely, aloneness of it all..surrounded by lots of people busy coming and going and the church filled with worshipers and me..alone with the memories of all those Christmases past...was hard not to just get out of there.
I know how hard it is to lose Daddy...our rock...no matter how old or even ill they may be...they are still Daddy and we depend on them even if all that is left is the physical being..somehow there is security even in that shell of a person they once were and when they are gone so is our world...Having been a foundling at birth, I know what it is to be an adult orphan again.
Yep, I am struck by that all the time. There are the couples, and there is...me. Not A Couple.
"Yeah, hi..." I sort of wave at the world of couple-hood. "Not a couple here. Yep. Enjoy each other. Don't take it for granted."
Jeff has progressed quite a bit further down the cognitive continuum, so I'm more used to the new norm of not having that person who's your buttress, your ballast, your always-there other. Still, sometimes when he's sitting peacefully next to me at the ALF (as opposed to slouching in a bent-over stupor, or hovering on his feet in a other-world daze,) I remember what my old normal felt like--having the warm, strong guy next to me. I cannot articulate how much I wish this were still the case.
It's so different. As a young single I knew I wanted a partner, but I wasn't quite lonely because the world held the promise of good things on the horizon. But it doesn't really feel just like that here, at the other end. I got my wish, I've done that, I've lived that, the promise has been fulfilled. It just ended way before I wanted it to.
So we're in something like a constant state of low-level shock, combined with burn-out, combined with a big question mark in the blank that used to hold the word "promise." Our mission is to figure out what we want to put in that blank, and take tiny steps toward achieving it. It's hard to think about doing that while slogging through the shock and sadness.
Dear Joan I am so sorry about hearing of the loss of your father and the way life has left you as it has. My condolences and prayers. As the New Year comes it will bring with it a whole year of new beginnings. May the Lord bless you and help you through the changes as they happen. Bruce D *
I agree with Coco - beautifully written Emily. You said some things I was thinking - that I HAD been single many years ago, but it was different. I was young and had the world of possibilities ahead of me. I did not know of the strength and comfort of "couplehood". In other words, I didn't miss what I never knew. But I had it for at least 36 of our 42 years together, and I miss it terribly. More so, because his body is right here with me, but he is so not here. I have accepted that I cannot get back what I had, but it is soooo hard to deal with.
When I lost my parents, some years before DH was diagnosed, I noticed the lack of support then. There was inappropriate behavior at the funeral home and other places, and just a general lack of awareness of what was actually happening. I thought then that he was just being terribly unfeeling and unsupportive. Now I know better. But it still hurts, even when you know why it's happening. And you do feel so very, very alone.
We, too, have been married for 42 years. Such a long time—it feels like part of your body is being ripped away when you lose another part of them. And it keeps happening, over and over. And it hurts, every single time.
I am so very sorry for your multiple losses. This is something that shouldn't happen to anybody—spouses or the ones they care for.
I am so thankful for this web site, because without it I think I would have lost my mind. It's just unimaginable to me that people are going through this experience without this support. I couldn't do it. I really need to know that there is somebody in the world who truly does understand what this life is like—and only another spouse really does. Thank you, Joan.
Yes, thank you Joan...life is a struggle now. While, placement helps to make the burden of caregiving easier. Only others here truely know what it's like to live this Alz life.
Emily...your words, "Don't take it for granted" hit a cord with me. Only yesterday I was saying these words to one of the carers in the NH, she is about to turn 50 and is going to Bali to celebrate with her partner and friends. Makes me look back at things and perhaps I took too much for granted...too late now!