I invite you to log onto the home page - www.thealzheimerspouse.co - and read my new blog. A realization and change of heart for me. Do any of you feel the same as I do? Do any of you feel differently? Please post comments here.
Yes, oh yes every time he does and says something that reminds me that my dear one is no longer here and never will be again. I've cried unexpectedly for no reason and then I realize there is a reason my love is gone. When I look at him now he doesn't even resemble the capable man of only three years ago. I feel so sad for his confused state of mind. This man could and did figure out almost anything that came up. He was a rocket engineer and was in on the early days of the space program. So much tech knowledge. But that really doesn't matter to az, does it? This disease is no respecter of persons. I believe this disease must be in the genes as his sister and mother had az. Hopefully, there will be a path to finding the gene and then the cause and eventually the cure. Not in time for us though and he really has no future except to decline more and more each day that passes. Even though I've made some plans for his care I won't let myself think of what's in the future for him and me.
I think that in this house, tears are being shed for the appropriate person—me. DH at this point is relatively content. His needs are being met, and just about everything is being taken care of for him. He doesn't agonize over the future, or even the present. It's sad, but he's not heartbroken every day because of the changes in our lives.
On the other hand, I remember every change. I also see what's coming in the future, worry over the future, and try to plan for the future. None of that is even on his radar. I live with the knowledge of all the losses in both our lives. I've shed a lot of tears over the loss of his future. Now I'm shedding tears over not only the loss of my future, but the loss of any sort of meaningful life in the present.
Because of my health problems, it will be quite a miracle if I survive DH. In the meantime, I have no life except worry, work, grief, loneliness, fear, and sadness. I don't see anything wrong with shedding a few tears about that.
Joan--I feel the same as you do, and have felt that way for years. My sadness is for Steve alone. I feel blessed to have had such a wonderful man for my husband, the good of that far outweighs the trials and tribulations of AD caregiving. Dare I say that many, if not most, people never have such ideal partners that you and I have had. So how can we feel sorry for ourselves, even now?
I am with Jan on this one. Maybe I will get to where Joan is but right now I feel more sorry for myself than I do for him. The only reason that I don't cry every day is that I have been on an antidepressant for the last three or four years. It numbs the emotions so I don't cry much but still feel as if there is no future for either of us.
He is 82 years old but his family all lived into the mid ninetys. I am 75 and in 10 years I will be too old to care if I am still here.
Joan, I too am sad for my DH...my soul mate. To see the man that could do anything, if he couldn't fix it, it couldn't be fixed...reduce to a sad confused shadow of himself..slumped in a chair dribbling, can barely keep his eyes open. I've cried rivers...I miss my DH of 50 years as he was. He had always put me and the kids first...even now when I visit him, he says he worries about me. It so hard to get away from my visits...wants to come with me..."drive safely" he says as I leave..
P.S. I just needed to add, that I feel like while he's in the N/H, I don't have any control over his situation anymore...I don't get asked if they can try this or that, they just do it!
I guess I think it's OK to cry for both of us. Of course I cry for him and his loss of life as it escapes him daily, as I just love him so! I am, however, grateful that after such a tough several years, he seems finally unaware of most of his inabilities, and loss of emotions for me, or anyone else for that matter. Maybe he does know how much he is now missing, but it isn't obvious by watching him through the days. For me, I am still here. And yes, I do cry often. I cry that 'ugly faced cry' that takes you down and makes you exhausted and weak. Other times I just shed those few tears that knock off the edge, and helps me continue through the day. This disease is shared by both of us in our own ways. We just can't change it, and must put the next foot forward. No one has given either of us a guarantee on life. We will just persevere for our loved one in the hopes that we will be able to move forward after. As for now, we are still 'one' and I will cry for both of us.
Guess that is why they call this terrible condition "The Long Goodbye". We grieve for years and when they pass it is such a mix of emotions it is hard to describe. You are so glad that they do not have to suffer this condition anymore and yet you miss them so it is almost unbearable.
Jim went so fast it was like one day he was talking to me in his limited ability to carry on a conversation and the next day he couldn't talk and within days he was gone. I do not believe he really ever understood his condition. He often said to me...."I'm not that bad".....and, of course I always agreed with him even though he was getting worse every month. I really expected him to ask me why I didn't take him to a different doctor so he could get better...but, he never said that either.
Jan K = I cry for me too. Will I have a future? Will I be able to provide basics for me to have a future? Or will I become a street person?
All our marriage every dream I have had has been halted because of him - job loss, new job, have to move; son needs a new school cause he has created too many enemies; I was in orchestra one time but had to quit cause he thought I was having an affair - so he had one, marriage was never the same and should have left him but I had two kids. Always something to do with him. Now we were living our dream to travel and work but now he can't work and the dream is slowly stopping. I am trying to carry on telling myself I don't care how hard it might be on him. Then I read here what is ahead. If I stay in the MH will it mean I can put him in a facility sooner because the care will be harder in a motorhome?
Selfish thoughts I know but I am tired of me being put on the back burning. So, yes my tears are for me. Sometimes for him and what he can't do, but also me.
No...you are not selfish...we all want to live and have a normal life. Many times I thought I couldn't take another week of never hearing the voice of a well person or even run to the store for a qt. of milk...let alone do something I might enjoy with my daughter or friends. You may recall how much I talked about the two week respite I had and that I really didn't miss my dh that much. I look back now and know that was the best decision I ever made because I did get to do the things that were missing in my life for almost two years. And, I didn't feel quilty at all because I knew he was being well cared for and I also knew the road ahead would be even more difficult and I was right about that also.
Looking way back and I mean way way back, say to even the 1980s, I was the one who hooked up all the electronics and the phones...this man could fly jets but this was too much to contend with..and the stereo was mine in the first place, I didn't think much of it. But even before any other real symptoms appeared, like getting him to pay attention, he got to a point where he couldn't really figure out the answer machine. Now we have the cordless phones and they are impossible for him...I need to go back to the damn dial up type...but he likes and can answer the cordless he just can't make a call on it..no matter how many times I show him... We got our first computer in 2000, I wanted one much earlier but he who has the gold made the rules at the time, and long story short, our nephew built it for us and showed us how to use it..I left directions for him to turn it on..he was interested in it, would say " I just have to get on that computer. Will you leave directions" He never could get it on let alone use it. YET he could follow maps, do math, do everything he always did...but those, looking back, were the early signs.
Just today he said " I really am a pain in the butt for you" and I said" At times you are, when you have the chance to get your hair cut..you talk about wanting to go and when I get someone to take you you refuse...you complain about your foot hurting and when I want to get you to a doc you give me a hard time..I have no one here, the girls live too far away...when I mention getting help you give me an argument" and just now, the birds are chirping in the yard and he said " that is a chickadee" It is amazing what he knows...and there is a lot..He just can't remember recent anything and I am beat out tired from repeating and repeating the answers to whatever question he has that has to do with the here and now.
I cry when I see him struggle too...and I am angry, just furious at the life that has been stolen. Sometimes I wonder if there really is a God and I am Catholic!
Tears? Oh yes & for both of us. I shed tears for him when I see him sitting across from me in the living room with that blank look on his face. When he can't understand much of what I say or tell him. When he is sitting next to me in the car looking out the window & really not seeing much (or seeing things that are not there). When he sees our children & grandchildren, but only thinks they are friends & doesn't realize that they are his children. I cry for me because I'm so lonely. I cry for me because I wasn't expecting to take care of another child at this time in my life. I cry for a whole bunch of other reasons that all of you would understand. BUT I only cry when I can't stop myself. I try not to cry in front of my kids, but when the tears flow it's because I can't stop them.
Mimi, I hope this doesn't sound trite, but there really is a God & your reward will be in heaven.
Yes, I cry also. Mostly because this whole journey is so futile. If I am tired, then the tears flow easily. There is nothing out there that gives us hope. It is like being in a boat during a storm. With each wave, we are slapped back into the reality of pushing on and for what reason? Just to be faced with another stage possibly much worse than the last.
Love is the glue that holds us all together. I can't imagine how I could survive if I didn't love dh. My heart goes out to the spouses who have had difficult marriages. What strength you must have to cope with all this.
I agree with Jan K and the others who shed tears for themselves. I cry for myself, the loneliness, the stress, the end of the dream ...
When I met DH, I knew he had MS. He had no symptoms. I knew there could be, down the road, many physical challenges. I did not realize there would be mental ones as well. Did I cry for him when he started using a cane, then a walker, then a scooter, then a wheelchair? No. He was so courageous, and his attitude was so wonderful and upbeat, that I didn't feel sorry for him. And I didn't feel sorry for me, either. When he had to retire from his career, he found other outlets for his energy and wrote a disabilities column for many years. It was published in newspapers all over the country. He still took care of the finances, and with his aides helping, he would do all the grocery shopping and errands.
But then the MS began its assault on his cognitive abilities, slowly, insidiously. And yes, that is when I began to cry. For me. He still remained upbeat -- and sometimes in denial. He did show frustration, anger at times. Meds helped him become a little more mellow.
I cry because I have lost so much, because I am AWARE of what I have lost, of the dream that has died. I cry because I have to handle everything, every battle, every bill, every repair. And sometimes I am just too exhausted after working full-time to deal.
Tears are a wonderful release for me. I have always been emotional - I've never hidden my feelings.
You know, crying for me is really crying for "us," because I am the one who sees what has happened to us both.
I truly believe you have to journey through all of these feelings to be whole again.
I have not shed that many tears and sometimes I wonder why--like there is something wrong with me. I do exercise regularly so I think the exercise relieves a lot of my pent up stress that otherwise might come out with crying. Yes my husband is dying. I do not know when but I do know that we all have a future after this disease. I refuse to have this damn thing take me along with it. I have joined some women groups, exercise, work from home and have tried to keep my life as normal as possible. I have supportive computer friends and am active in my church. I have learned that each new day can bring something good if we will let it. Self pity is absolutely the worst thing. Once in a while I will succomb to it but as soon as I feel it coming on, I try to change my thoughts. we have control over our thoughts. What I hate the most is having to handle everything.
Hello everyone. This is my first posting however I found this site months ago and thank you all for helping me cope. I agree with so many above. I cry hard for both of us - often! As an RN I know I am going to get ill if I do not get a better handle on coping with this horrible disease. I find it all so sad and like many have said my capable and strong husband is gone. How can that be!!?? He is in a facility and wonders why. I silently scream every time I see him looking confused and wondering what is going on in his world. We are going to move him to a facility specializing in dementia next week and I shudder in anticipation of how he will react. I know within a few days he will adjust as he is quite accepting of where things are and certainly lives "in the now" which I am trying to adopt. At least we are all in this together and thank you again for sharing your journey.
Welcome aboard this bumpy train, katherinecs. So sorry you need to be here - but we are all in this this together. You will find very understanding and compassionate folk here, who will be with you through the complaining, the venting, the raging - whatever you need to do.
I mentioned this topic to DH last night. I said I was reading a discussion on caregiving and people were talking about crying. Some cry for their ill spouses, some cry for themselves and some cry for both.
I acknowledged that I have a lot of sad days and shed many tears. I asked him what he thought. He said, "You should cry for yourself, because you have it so much harder than I do."
Wow.
I don't know where the line is drawn between self-pity and true sorrow -- and who gets to draw it. But I would not call the heart-breaking sadness many of us feel about our situation "self-pity."
Perhaps to outsiders, that is what it appears. But to those on the inside, who share the sadness and the frustration and the loss, who experience the challenges we face each day, who understand we are only human and can handle only so much ... to those, it is not a selfish thing to cry about our situations.