Sometimes we have experiences that throw a bucket of cold water on us and wake us up to the reality of what it must be like to live in our spouses' brains. I had one this week. I invite you to log onto the home page -www.thealzheimerspouse.com - and read today's blog. Have you ever tried to look at the world through their brain as I did? Gives you a whole new perspective.
Yes, it is so sad. They really are just capable of staring at this point. Not thinking. My husband towards the end was only watching animal planet and the childrens shows like Blues Cube and Sponge Bob. He would call me in to watch with him, which I did, usually crying as I watched.
As sad as it is, I think it is a giant step that you were able to look at the world through Sid's mind..... it is hard to do! But I think it is wonderful that you tried. I had several of these epiphanies; each helped me become a better, kinder caregiver.
Lynn is in late stage, it is all about making him happy and comfortable now. I am able to give him 100% of the best of me because I am not consumed in the 24/7 care now. Placing him was the hardest thing I have ever done, but it was also the kindest thing I could have done for him. And for us it was a blessing because it gave us back our love. I wasn't his nagging nurse anymore (whom he hated!), I was his wife again. He completely changed once placed, so loving and kind again... "My Lynn" ♥
Lynn also mainly watches cartoons now. The classics though, like Tom and Jerry and Looney Tunes, but unlike ((Joyce)), it isn't heartbreaking to me. He laughs right out loud, he points at the screen to share something with me, my heart soars watching him enjoying himself. It is sad that he is "reduced" to this.... but I guess I am just so grateful he still does find joy and laughter.........
My dh is very functional but the memory is bad along with reading and tv comprehension practically non-existent. A letter that has a phone number in the body is just a bill to him. Like you with Sid I have to be very selective when I choose a movie or program to watch. No flashbacks here either. His mind is like a sieve. Not long ago we saw a movie that said "6 months earlier" and I knew he would be lost.
My dh has said he is losing his mind. I try to encourage him and say it is probably the time of day, that he is tired, might be a change in air pressure. I have come up with all sorts of reasons.
It is sad, pathetic and so unfair. Always a good moral person. Why? I keep thinking I didn't appreciate him enough when he was whole. I always loved him but maybe that wasn't enough. If I had known this was going to happen to him, is there anything differently I would have done? Maybe.
Yeah, Jeff doesn't follow plots or threads of shows or movies at all. He enjoys watching Jon Stewart or Colbert with me, because he catches a few jokes, but there's no theme you need to hang onto. The last movie he said "that was good" about was Toy Story 3, I think just because it was cute and had catchy music.
My husband also said that he was losing his mind. The reply that I made that seemed to comfort him most was, "Well, I'll be here to make up for it - I'll use mind to help yours. Between the two of us, we'll manage."
its how the disease progresses. they just cant follow simple themes or stories at the movies or tv. and it can happen quite early not late stage. i agree with nikki that it gives me joy to see DH smile and laugh at cartoons a small child enjoys but in the scheme of things its JOY at a different level and thats all that counts when they get to this point. cartoons are produced for kids in development for eye movement -colors-and easy content. its where they return eventually. at first its sad to realize their brain has reduced to this cognitive abilities but like everything AD you have to adjust with them. divvi
We were watching a movie on a DVD that other day and I did something new; I would wait for a scene to get over and I would pause and explain the reliavence of that scene to the rest of the movie. I at first thought that this would really "set off" DH and make him angry but it didn't. he thanked me more than once for taking the time to explain it to him. I found that by doing this that DH would sit and watch the movie and not interrupt it so much. If we could just pause the television. thanks for this discussion, Joan.
This is a strange one along the same line regarding not understanding movies, programs, etc. I came in from outside the other day and my dh was watching some program in some foreign language. I didn't say anything and just let him watch it.
One thing that has jumped out at me recently. My Dad has macular degeneration and has extremely poor vision (he's 97). Watching my husband attempt to find his food, the toilet, his way around the house, etc., is reminding me more and more of my Dad--practically like a blind person. This has really increased recently and it's almost shocking for me to process. But in some ways, I think it is easier for me to relate to this than the cognitive deficits because it is literally happening right in front of me. I can't see what is happening inside his brain, but I sure can see it when he tries to sit on the edge of the bathtub instead of the toilet or the arm of a chair instead of the seat. No wonder he doesn't always recognize me!
My hb does not remember what just happened either. I think that is why he likes to watch sports, game shows, and oldies. Even though he does not remember what just happened in the game (hockey, baseball, football) he does it enjoy it at the moment. He likes to watch the old westerns too probably because he can remember them more. He will watch the same NCIS, Criminal Minds, Monk, CSI but does not like the new ones. I guess the reruns he may remember some. When the short term memory is shot - they can't follow or remember what is going on. It is very sad.
Our favorite shows are Criminal Minds, all of the CSI's, and NCIS Los Angeles. We have watched most of these shows all season, and he will watch the reruns all summer. I think the odd channels that buy the old shows only buy a certain amount and show them over and over again. Sid has watched some of the old episodes of these shows FOUR times, and remembers nothing from any of the previous times he has watched. At least it keeps him entertained, and he doesn't get bored. But to have no memory of any of it............so sad.
Charlotte, Joang Our exact similar experience these last 6 months, including watching programs in Spanish. Neither of us speak a word of a 2nd language. Just hate when he watchs 4 sessions of House in a row. That one is not my favorite. Just concerned that so many of these favorites appear to be on the hit list for next year. Hope the odd channels continue to help us out.
I understand what you are saying. My Dh watches television and seems to enjoy it and finds all sorts of interesting things to watch..far more than before.Thank heavens for all these cable stations! I do notice that if I ask what happened during a scene when I was out of the room he can't tell me. And if it is the AMC station where often they run the same show right after it ends he watches it all again as if it is the first time. WE don't talk about the plots at all..he just will ignore me if I ask any questions about it. I can see on his face too, when he is working hard to take in new information.
Reading your blog Marilynin MD, sounds just like my HD. I have just had to place him and partly because he is blind with macular degeneration and visional agnosia, and he couldn't find his way around the house. His memory is practically non existent, but I think he is better off in the NH where there are people around and things happening, than sitting at home with just me. He can't see the TV and anyhow it seems to bounce off him and he doesn't understand it or is not interested. It is very hard getting used to being on my own, and I have to try and make another life, not easy.
Oh Joan this is oh so familiar! Dh has been in this stage for several years. Have been trying to imagine what goes on his brain for so many years now. Just living moment to moment. A couple of months ago, I was at my wits end, working full time losing my home, bankruptcy, Bob and "Al's" never ending physical injuries, I was clearly having a melt down. When I asked DH's doctor how did I know when it was time to have him in a Adult Day Care, I was so grateful for his response. His doctor said "Sheri you want to know how you know when? The reality is this, The question is not how far along he is in this horrible disease, if you were not in the picture where would he be? The time is "now" when you feel you can no longer handle the care giving, and you are putting your own health at risk not what stage "he" is in. That was so freeing for me. But having him in ADC has helped me be more tolerant of all the explanations and repeat questions every day.
Thanks, Joan, for the reminder. It's so easy for me to get so caught up in what I am missing out on and how his disease is effecting MY life. I am clueless as to how it is effecting him. I am humbled and sad.
Mothert, that is the same affect it had on me when I experienced it ....... after that I tried to always "put myself in his shoes". Even trying, I just can't imagine! It certainly helped with my tolerance levels though *sigh
One of the saddest things for me to see is when my DH is trying so hard to remember something, or explain something to me, and he is really struggling to find the right word...he has this look on his face that just breaks my heart...I think this is when it hits me...how awful it would be to have such limitations. He was always so articulate, and vibrant.
The hospice nurse added a new med to G's regime and it just destroyed him. He falls constantly anyway, and this (ativan) made him unable to even get up with assistance. He fell twice as we were getting his haircut. When he was home safely in his chair, he looked at me, said this is getting worse, and it is just the shits! This is the first time he has really commented on his illness. I hurt so for him. I did get a weekend hospice nurse over and changed the med situation.
I had the same experience with DH and Ativan when he was at home. This medication was good for his mood swings but spaced him right out and made him unsteady on his feet, he was better off without it, and went onto Seroquel with good effect.
Let me try to put a positive spin to that feeling of sadness. Earlier this past week, I felt a 'sense of calmness' come over me. My wife and I were watching TV ... as we do every afternoon/evening for many hours, holding hands and/or cuddled together ... and at a certain point my wife said to me, "I just love holding hands with you while watching TV." That was no major revelation ... we've been saying things like that to each other for nearly 45 years. But for some unexplained reason, THIS time my mind flashed back to when I was sitting on that same couch 5 years ago, holding hands not with my wife but with with my mom. My mother was under hospice care in our home, dying of leukemia. I felt a sense of providing a feeling of security to my mom ... that although we both knew what the future held, somehow we were at peace with that. And this past week, I had that same feeling. My wife and I both know what the future holds ... and somehow, possibly really for the first time, I now feel at peace with that. Maybe it was that I have finally come to experience that line in the Serenity Prayer ... to accept the things I cannot change. All I know is that despite the re-runs of NCIS, Law and Order, Bones, etc. that I have seen way too many times to ever want to watch again ... but I do watch them over and over again with Clare because they are always 'new' to her ... I have become more aware of the 'security blanket' feeling that I now provide to my wife each day. And somehow that awareness has made me accept more calmly what is happening to her ... to me ... to us. Despite dealing with her AD for several years, I guess I just wasn't ready to fully accept that reality until now. I was saying the words, "It is what it is," but only this past week did those words REALLY hit home. And Joan ... we, too, watch the Mentalist! And Clare had also forgotten about the locket!
What a loving tribute you have written while at the same time realizing exactly what your life means to you. You are right ....it isn't only "it is what it is". It is a definite eye-opener into some one else's mind. We thought we knew our spouses as well as we knew ourselves but every day my dh is teaching me how to be more patient, responsive and yes, even more loving. There are no more reservations or conditions. My thoughts are about him and how I can make life easier for him. He spent years providing for me. Now it is my turn and I do it gladly.