I know this sounds strange but I feel so lonely. DH is in the beginings of this terrible illness. He has been on Razadyne for just over a year now. At 73 he is still working, although I can see some progrssion. He makes a point of telling me the things he can remember. I know he is scared, he knows and reads everything he can find on this illness. But he is distant. Different. Not the loving person I married. Not the man who liked to hold hands while we walked, almost like he is not there. It this normal? I have plenty of family around, sometimes too much. We have our 9 year lod grand daughter living with us, we have had custody of her since she was 6 months old. Monday he asked our son who was doing the brakes on his van what the tire went to that was laying on the ground next to where he was working. The man is a manchanic! He does repeatedly ask the same questions now or accuses me of not telling him things we had discussed. If I tell him we talked about it he says he does not remember but in a tone that says "I don't believe you". Trudy
Trudy, I have the same problem with my DH not remembering things we have spoken about. If I say we did discuss it he'll come up with some reason where I had worded whatever differently so he didn't understand.... ergo it was my fault. Sometimes I wonder why I tell anything except triviall things. He will be 80 in September and other than short term memory he isn't too bad. YET!
I guess we will all hang in together and pray we can take care of things one day at a time.
I think he thinks I am hiding things from him. But this I guess I can handle as long as I remind myself what we are dealing with. But I miss him. That person I married 27 years ago. That person who never raised his voice to me and never allowed the 4 boys he took on to either. The man who was always there when things got hard for me with the boys. Now he snaps at me and can be cruel in what he says. I think this is the hardest part. Being lonely because the man I sleep with each night is not the man I married. They just look the same. Trudy
Welcome to The New Normal! Many, many things that aren't "normal" but ARE part of our everyday lives. If you haven't, read that article on "Understanding the Dementia Experience" And remember, for them, it will never be about YOU again. They don't behave that way to hurt you or mislead you. They behave that way because they can't help it. That's what we just have to keep drilling and drilling into our heads.
"It will never be about YOU again'..boy did that hit home. that one liner gave me knots in my stomach. I hadnt thought of it that way but its so very true. its always about 'them' and whats good for them now. divvi
All of the above is so accurate it is scary. It amazes me that so many people can behave in the exact same manner from an illness. When my husband started on his 360 degree personality change I couldn't fathom what was happening. In nearly 50 years of marriage, we really never quarreled seriously..minor stuff, but never a full blown fight. Now it is a war zone. Yesterday I printed the opening comments from this site and had him read them saying that I could have written it. He was flabergasted..."I'm not like that! I don't do that!" I told him he had been like that and doing that for 2-3 years, and although He still isn't totally convinced, he really thought about it and we actually had a calm conversation. Perhaps it wasn't the PC thing to do, but for a while it seems to have helped. For how long? Guessing game.
Val, I wouldn't bother with the tape recorder. He will have some excuse. They always seem to have an excuse. (that's not what I meant, I was only trying to help, I can't remember meds since they change so often, etc.)
Thanks for saving me the money. I always think there is some way I can reach him. I just read on another thread about a husband who read the literature on Alz over & over. Yes, there is always an excuse. And usually it is MY fault.
Everything you are asking is "normal" for the disease. If you have not yet done so, please go to the home page of this website - www.thealzheimerspouse.com - and click on "previous blogs" on the left hand side. Scroll down and read #1- The Welcome Blog talks about being married to a stranger; #16 - loneliness; #137 - about repeated questions; and on the home page, about 2/3 of the way down, is June 12th's blog - Now I am a Liar - My husband doesn't trust me. You will be able to relate to each one of them.
You are so right, the abnormal is the normal now. I need to get used to it, but it so hard to give into that idea. The normal times are getting fewer. I hate what I know is ahead. I am sure we all do. Thanks to this site I am learning how to cope. I am learning what to expect and how to handle it. Trudy
Trudy, I hate to think about this disease getting any worse. I am at the end of my rope at times. I have a spouse but don't! I am so very lonely. I moved recently to be closer to my family and his (both previously divorced) for family support. What a mistake. My kids are leaving for Thanksgiving and Christmas. I will be alone during the holidays So now not only have a lost a spouse, but my long time friends. What a mistake. I hate the holidays! His family hasn't even asked us what we are doing! I don't know if I can hope this one out....(my parents are decreased and I am an only child too)...Guess things could be worse. Hate this pity party.
Someone in this group gave some excellent advice which has helped me immensely. It was not to anticipate any help or caring from your fmily and friends and then you won't be disappointed.
When we were first trying to figure out what was going on, one of the symptoms I mentioned to the neuro was how hubby now slept WAY over on his side of the bed. They shrugged it off, but to me it was such a major change from the way we always snuggled up, like two little puppies. It's so hard. There are so many things I loved about our relationship and losing them one by one is exquisitely painful and terribly lonely.
Now, he loves our little dog with his whole heart. I'm happy for him, but I do remember when I was the one he felt that way about and it makes me sad and mad and even bitter. But I've found a little pathway for myself. I try not to think too much about what is coming and not too much about all that I've lost. The small footpath in the middle is where I live most days. Holidays can be so sad because I want to think about the way things used to be. Instead, I think about what I need, what I might enjoy, even on a tiny scale. For example, I buy and wrap my own presents, but try to involve him as much as possible and thank him profusely when I open them. He's happy that he got me something and I smile because while I didn't get what I really want (my husband back), at least I got exactly what I ordered.
Bunny - this time of years seems to enhance the alone most of us face. Our marriage started downhill years before due to ED which I have found many of us experienced long before diagnosis. We sit in our Motorhome - him doing word search, me computer games with the TV going that neither of us really watches - just noise to fill the void.
While I can manage and deal with his constantly changing behaviors and symptoms, the loneliness is defeating me. I don't know how to live in his Alzheimers world - and don't really want to. I want to 'live out loud', but feel like I'm suffocating. I cannot find a balance. I feel lost.
Most of us have been exactly where you all are and certainly understand. It sounds to me like most of you need some respite. A week or even a few days to just do what you want to do, especially something for yourself. When I had respite a few months before my dh died I was amazed how tired I was. For several days I did nothing expect take 3 or 4 naps a day and just rested.
Been more than 15 months since I had respite..and I am doing things now that will resolve this in the future.. As to the holidays..he is aware of Thanksgiving and a little bit about Christmas..at least a couple of days ago... But in the past couple of years, I did the select things I needed, mostly skin care products, wrapped them and put it under the tree from him...same scene as others have done....makes them happy to think they went out and did this for me..but we know better and it is a hollow victory.
Mimi...that reminds me of last Christmas and I thought it was so clever of Jim how he "got" my Christmas present. We were watching TV and a commerical came on and there was this beautiful heart necklace. He said..."There...that is what I want to get you for Christmas" It just floored me...I said OK and the next day we went shopping and got my beautiful heart necklace. I wear it most of the time. Memories will be all I have this year...but, I will make it through to the New Year one way or the other.
We haven't done presents in about 3 years. He lost his understanding of holidays early on. Our kids give us gifts, and he is very confused by them. The last Christmas present he got me was for Christmas 2008. It was a cross with the serenity prayer on it. It was shortly after he was diagnosed FTD and was still driving at the time. He told me he charged it on his credit card, but as the charge never came through, I figured out he must have shoplifted it.
I'm deleting Christmas this year...it's just not going to be the same....no presents for anyone. I will most like have a meal with DH at the N/H on Christmas Day
Julia, this is your decision to make. If not having Christmas is going to make it easier for you, and you honestly think that, then hey, go have dinner with your DH, and just know that you are taking care of Julia too. There are only traditions for the holidays, and if you choose not to celebrate this particular one, then that should be OK. Give yourself a break, enjoy your dinner, and know that taking care of Julia is also important. There honestly will be other Christmas's for you, but right now apparently isn't the time. (reserve the right to change your mind at the last minute though :) Hugs!!
Thank you Janny....that's just how I'm feeling right now, I just can't do it this year...but I will reserve the right to change my mind at the last minute though .
JudithKB, What a sweet thing he said and did....He really really did select the gift for you..saw it and chose it and got it..that is a fine fine memory....
I love my tree bJuut with the kittens, I am not sure what to do...I want the cheerful look in the house and maybe it will do some magic. I am not feeling it this year in regards to shopping...I always loved to shop and wrap and make cookies etc....but this year those on my list are getting scarves I have knitted all year as my stress reliever...I am just learning so mine are not really fancy yet but they are useful, some a little more like an accessory...and that will be about it. Always in the past I have had my cards addressed by Thanksgiving...not this year.. I have all last year's cards out and it is amazing how the numbers have shrunk either because people passed on or the cost is just too much...and of course there are now the internet style cards. So they will go out piece meal this year...and on hubby's gift list will be new pjs...and maybe a book and for me the skincare goodies I need anyway, all tucked up from him... Just not feeling it this year..