I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. There are always emotional surprises with this disease, and the blog relates one of them. Please tell us if you have any experiences similar to mine.
i''ve had several of those moments over the years. the first time you feel the 'special loss' is overwhelming and floods you with emotions like you are stating joan. uncontrollable sadness of loss and despair. i used to feel very sad and depressed over the sandals commercials that showed happy middle aged couples on the beach holding hands in romantic sunset enjoying those second honeymoons we promised each other. never to happen again. my stomach would literally knot when those commercials came on tv.
recently now that DH is late stage 7 I had even a worse one. i dont think my dear husband will ever leave his house again. we've gone from travel, cruising and being together nonstop for 20yrs to him being a recluse in his home and probably wont ever get to leave the house at this point due to loss of mobility. for me its as bad as the first loss== of us as a couple now to the loss of him as an individual. and the very essence of the person he was. the pain never ends with this disease only seems to escalate over the years. litle did we know when we say a mans home is his castle it can also become his prison if AD enters the picture. divvi
oh yes,my wife an I would fish when ever we had a few free hours,since this @#$%^& disease took over I quit an havn't fished in about four years, an now that she's in assisted living I have no desire to fish again,it was something We did together,an this from someone thats fished for fifty plus years
This is all so very true. We've played golf together for 37 years - all over the country at some of the best golf courses. Even after DX we played for another 2 years - only closer to home. But for the past 5 yrs. - no golf. He can't do it. Broke my heart - and his too. And...he lost all his golfing buddies. Wonder where they went???? Oh, the pain...
my thing is we would go to this secluded beach and yes( make love) our alone time away from 5 kids, i never want to go back to that beach again, the sadness is so overwelming, i want to remember it but don`t want to see it, 40 yrs of going there
He always wanted to return to Norway and sail through the big fjords. Now I'm sitting here looking at the webcam of the ship we were supposed to be on, but had to cancel the trip due to his downhill slide.
Playing word games like boggle and perquackey, doing crossword puzzles together ... gone. Card games with our friends, even with our grandkids ... gone. So MANY 'little things' that we all know are the real things that matter in our lives are now gone. As with virtually ALL your blog messages, Joan, this one hits home.
It has always been the smaller things that hit me harder. I still often do a "wee, wee, wee, all the way home" crying after visiting him. I miss playing golf with him, watching movies, playing cribbage and just doing things together. I still can't eat corn on the cob. It was something we always enjoyed eating together.
Divvi, I agree about the Sandals, and other resort, commercials. Every time I see one it hurts because we did so much travelling together - managed to get to all 7 continents.
Another thing we did a lot of together was sailing. 2 years ago she was not able to go with me on the boat, so I gave it away - a sail boat we had had for 40 years. Since then my daughter has asked me to go in her sail boat, but I really have no interest. This was something my wife and I did together.
My husband rode a Harley for years and I on the back. We would go for weekend trips and ride all day. Sometimes in the evening after dinner go for a ride just to enjoy each other and the feeling of being "free" with the wind blowing and the sunset so beautiful.
Everytime I hear a motorcycle -- especially a Harley -- go by, it just brings back so many memories. Dave was diagnosed last year and still says "I'm getting another motorcycle". It just breaks my heart when reality sinks in for him and then he gets really depressed.
I'm having a hard time right now because I turn 45 on the 14th. The husbands of friends my age are throwing parties for them, taking them on trips, etc. I guess I am lucky, my husband DID say "isn't your birthday soon?" this morning. I said yes, it is on the 14th. He said "We'll have to go out to dinner!" Well, I'll have to drive, help him decide what he wants, order it for him, help him eat it and then sit in silence because we don't have anything to say to each other. I'd love to down about 2 bottles of wine at this point, but then there's the "I have to drive because he can't" issue. :(
Oh Shannon, You are so young & my heart goes out to you. My birthday is this month too, (I'll be 61) but my DH doesn't know & unless my daughters do something for me I probably won't even have cake & ice cream (a family tradition with us!) We are going to Ruby Tuesday for lunch cuz I have a coupon for a free hamburger on my birthday....of course I'll have to help him order & I also will have to drive. His birthday was last month & he didn't even remember that.
Shannon, the sitting in silence is the saddest thing of all! We recently drove 75 minutes to see a play. After my first 2 attempts at conversation were met with barely a head nod, I gave up. We drove the entire way without a word. My DH - my best friend, soul mate, advisor, etc. used to discuss family, religion, politics, culture, the world! The vibrant conversation has been replaced with that far away stare....
I hope you manage to have some fun on your birthday - can you find some friends, neighbors, or family to go along ? That could provide conversation and a designated driver!
I'm another August birthday...G said the other day that he wanted to give me $$$ for my present (he never gave me BD presents in the past). I thanked him, but told him we no longer have disposable income....he promptly forgot about it, and went back to telling me he doesn't like me now. Bloody disease!
There's a local tourist place/activity that DH and I go to about twice a year. Entertainment and other things to do . . . something we have done for years and always has been very enjoyable. A couple of years ago I noticed that the experience of going to this place was chnging. Hard to define but hubby was repeating the same descriptive phrases over and over again. Would move past some things quite quickly and then stop for ages at something else. Appeared to be processing everything differently. Last year, while at this place, we ran into some friends that we hadn't seen for ages. I was taken surprised at my hubby's lack of enthusiasm at meeting them. He had no interest in talking with the husband to the point (at least to me) of rudeness. This was someone that he enjoyed conversing with in the past. Didn't want me to chat with the wife either. The whole thing put him out of sorts. This summer we were at the same place and saw another couple we knew. They decided to walk with us for a bit to chat and visit. Well-----my hubby was very displeased. Set off ahead of them (and me) and basically was behaving like a young child who is tired and definitely out of sorts. It was very awkward as hubby was totally unaware of how socially inappropriate he was being. I realized later that in his mind he was thinking this was our evening out and he is not prepared to share me with anyone. So in the future I will keep that in mind should we run into people we know (which usually happens there). It was never a problem in the past to hubby who would gladly visit with whoever we met and then we'd move on together and continue enjoying the evening.
For me realizing what was happening was like a kick in the stomach. We were at a favourite place, doing something we've liked doing and enjoying ourselves when there's this unavoidable reminder that all is not as it was. We no longer socialize as much as we used to with friends and hubby often declines attendance at social events. Going out together for lunch or dinner is way less frequent and when we do, I have to initiate and carry the conversation. Small losses in the big scheme of life (especially when compared to some stresses people go through) but still losses.
Funny but my Dh never remembers anyone else's birthday.When his birthday rolls around he Never forgets,it's like he's a little kid again.He tells everyone even people we don't know.
We were to take a trip to Italy in 2006..planned it for Oct. But then in Sept he had to have a femoral bypass of his leg..recovery was about 2 months..but then in 2007 he had a TIA and that ruled out any trip that year..in 2008 we went on a family trip with the kids to Iceland..it was wonderful. But DH does not remember anything about that trip nor our 25th anniversary trip to England and Scotland..So those Sandals ads get to me as well since they are now out of the question. Conversation? not meaningful. He forgot our anniversary this year even though several times during the day our middle girl who was visiting was reminding him to go out to dinner to celebrate. I find myself wondering already what to do about Christmas this year. I suppose I'll put up the tree since I know he will love it the pretty lights...what to get him for under the tree? He has not used anything I gave him last year...maybe just some sugar free Sees Candies...Last year I put things I was out of ( read skin cream) under the tree for me so he would not be embarassed. Christmas card...maybe I'll start the salutation out " Greetings from Alzheimer's Hell". " Things here in Dementiaville are going along as predicted..lots of doctor's appointment, new meds here and there..no trips to fun places, less conversation, forgotten birthdays and anniversaries and fewer friends to stop by. Hows by you?" or maybe I'll skip it altogether. WE don't do anything meaningful anymore either.
PrisR----the socially inappropriate behavior crops up fairly regularly. Find it hard to explain to others as there's no definite diagnosis yet. Can't exactly tell family or friends that my hubby likely has start of some kind of dementia. Awkward. Family members are telling me it's "his personality" that is getting "more rigid" or "set in his ways" or "stubborn" or he's "rather nutty". So they are noticing differences but either not wanting to face possibility of the changes being caused by early dementia or not yet seeing connection between his behaviors and cognitive challenges?? I guess too as spouses we see the differences more vividly (even though things creep up on us) because we can recall quite well how things were before.
I guess I am very lucky. Most everyone we know has been told about DH's AD & they accept his behavior as part of his disease. We were just at my family reunion & all my relatives knew & were very kind to him. I actually was able to visit with my relatives while he went around visiting on his own. I must admit though that I am beginning to hate taking him with me when I run errands because he thinks he knows people when he really doesn't & then when he talks to them he starts telling them about when he was in the Navy (40 years ago) & of course he has to ask me the details at which time I just want to hid in the next aisle. It's not like you can just tell stangers that he has dementia (although you want to to explain their behavior.
Another August birthday here, will be 62 on the 24th. I think everyone here knows that I miss conversation the most. We used to sit on the porch every evening in the summer, sometimes until the wee hours talking about everything and nothing. We were never at a loss for words. The other evening we sat in the gazebo at his facility and after I had told him everything that I could think of to tell him, I laid my head in his lap and sobbed, just knowing that we would never share a conversation again hurt more than I could stand.
ElaineH, you could try flashing one of those "My husband has Alzheimer" cards. I haven't used them often, but a couple of times they were very useful and the response was always good.
My husband is in the nursing home, so I'm sleeping alone for the first time in nearly 50 years. I tend to stick my leg out of the blankets. Even 6 months ago he would gently cover my leg with the blanket. Drove me nuts because I didn't want it covered. This morning I covered it myself, and had a very sad moment.
This one is a bigger thing. He was diagnosed 5 1/2 years ago and I placed him just over 3 years ago. I had never lived alone before then. I may be used to living alone now but I still don't like it. Of course I am not sure I can really say alone with 2 dogs and 6 cats.
He used to be my ears at home - he heard the phone ring in the middle of the night, he heard the alarm clock go off, he heard my beeper go off when I was oncall. I miss the comments he would make when I couldn't hear the phone ring, the alarm clock or the beeper.
Jeannette, Thanks for the suggestion. I just might have to print some up on my computer. I would be better than trying to pry him away in the middle of a conversation without any explanation. Thanks for the help!
I have to admit, if he starts chatting with people like in the RV parks I walk away with an excuse I have something to go do. That way I don't have to deal with his repeating. I know - chicken!
We celebrated our 60th anniversary by taking our family on an Alakan cruise. The kids kept saying "Happy Anniversary, Dad!" He'd turn to me every time and ask me what they were talking about. I finally just told him I didn't know because I got tired of repeating myself. Guess I'm a chicken, too.
We used to walk on the beach holding hands. Now we walk holding hands because his balance is so bad.
There's no conversation any more. I timed it the other day--from 3:30 in the afternoon until suppertime he didn't saly anything. I told him dinner was ready. He came to the table and ate. He said it was good. Got up and never said another word until after 11 o'clock when he had to go to bed.
I find I do a lot of chattering to anyone who will listen. I try not to do that ecause I don't want to bore anyone, but the boredom is really stifling.
My DH chats it up with anyone he comes in contacts with. Like Charlotte, I walk away because I don't want to be engaged with everyone I meet. I'm not a talker and he talks non stop. Will I miss this some day? Looking at from this side I think I'll enjoy the quiet.
Divvi and Marsh....agree Sandals' commercial will put me over the edge. Thank goodness we did get to travel a bit before this disease claimed him. But must admit Sandals has been overshadowed by his not remembering my name and who I am....
We went out to dinner for my DIL's birthday recently. Her Dad and sister joined us. The restaurant was very noisy, so DH couldn't keep up with any of the conversation. He's a tall man (6"3") and I looked over at him and he seemed so small and frail and confused. I had to excuse myself and go into the bathroom and cry. When we got in the car to go home he declared "let's not do that again"! The sad times are many these days. Sometimes I don't think I'm going to make it through this (as ol don so wisely put it) @#$%^& disease!
for a lot of years, I haven't signed up to go to company picnics and parties. Early on when his personality was starting to change and when I didn't know what was going on, he would either fight just before the party and make it a challange to attend or not go at all. It always took the fun out of whatever we were planning to do. I got in the habit of not telling him about the get togethers and just not go. If he happens to find out after the fact, he always acts so sorry that we missed it and tells me that we should go the next time.
this still happens with drives and camping trips. I have to really want to go to make the plans and make it happen.