Today is Sunday, August 21st, but I have posted tomorrow's blog early because I am going to be so busy the next two days with appointments.
I invite you to log onto the home page - www.thealzheimerspouse.com - and read the blog. I would like both new and veteran members to respond to it. From the veteran members, I would like to hear if you have done as I have and if it has destroyed your compassion as I mention in the blog. I would hope the new members read it and learn from it. I would like to hear their responses also.
How fortunate you are that you can supply names and objects' names when your dh starts substituting. Sometimes I can figure out what he is talking about but so many times now I just can't figure it out. Females are "he" which isn't helpful. Long before I figured out dh was suffering so much memory loss, I realized his immediate problem was in communication. No, there wasn't a thing I could do about it either. Just roll with the punches. We just don't want to give up! In the back of my mind I keep thinking "there must be something I can do to help him." In reality, there is nothing but acceptance. Every decline takes something out of us, makes us smaller than ever. Smaller perhaps but stronger.
DH is now substituting words also. He calls his watch a clock; a tree is a big bush. Many times he can't get the right word out and I generally know what he means and will supply it. He also has forgotten names of our friends and relatives. No, there's not a darn thing we can do about it, but roll with the punches, as Shirley said.
You have reminded me of all the things I used to do to try and make Gord remember. I was sure that if I tried hard enough, I would get his memory back. I had flash cards and notes. We would work every morning on trying to make him remember something. When we were going to the neurologist, I would make him spell "world" backwards, draw the stupid clock, tell me what season we were in, what month, what day. I would do this as we sat in the office waiting for our appointment. I don't remember how many years into the disease I gave up and tried acceptance.
jang, I did the same things. It helped me feel in control and that my husband was not progressing in his disease. that's what I wanted to believe. I don;t do it anymore and I feel like I've given up on him, not that I've accepted it.
Joan---I see the acceptance as being more compassionate toward my DH than maintaining the unwinnable battles. Fighting the declines, pushing him to perform what he can no longer do only underlines his deficiencies, indicates new inadequacies---just plain tells him he isn't good enough. Where is there compassion in doing that? From anecdotal reports of the flashes of the person seen even at the end when Alz (or whatever dementia) is finally taking them away, I believe they are hurt, damaged beyonds repair, but still with us, and I am doing my best to see that my DH gets through this with as much dignity and love as I can. Accepting the changes and working with them is not giving in; not quiting on our LOs. It is giving them the respect of standing with them and helping them get through. Sowhaqt does it matter if we supply missing words--the idea was passed. When we respect them enough to help them finish the journey in dignity and love, won't we have proven our compassion?
Dear Sweet Joan, Try and just go with it...it actually makes it all the easiest...and all the worse. Johnny's was for a harmonica...Mouthharp...which is actually correct, but something he had NEVER uttered out of his mouth. I love your blogs/writing. Robyn
As much as I would like to say I handle the declines well...it would be a lie. Some days I do so well but today was an example of my failures. I was so tired when we got home from church and DH didn't seems to want to do anything special so I sat down and told him I wanted to take a little nap. That's when it started. He brought in a handful of papers, pictures and Kleenex. Pulled a chair up next to me and began to ask me to help him "fix it". I sorted through it and then tried to return to my nap. Kept asking me to sort and help him. After the third or fourth time and asked him to put the stuff away and take a little nap since he said his eyes were bothering him. I turned on the TV to the Little League World series so he would get bored and go to sleep. Next thing I know he is telling me that I am lazy and don't do anything and that there were "people" that needed help and pointed at the floor. Kept telling me I was doing nothing to help them and it was all my fault. This went on for about 2 hours. Finally, I had enough and lost my cool. It didn't help either of us and ruined my day. One day I will learn!!!!!
My husband has lost most of his ability to speak except for a few phrases he uses. He still can say my name, but he says no one elses. I can tell by his face whether or not he has recognized someone. He knows his brothers (sister, I'm not sure about since she never attends any family things), our children and my family. The more he likes you the more physical contact he will have with you. Those he likes alot he will kiss them hello or goodbye, rub their backs or pat them. Others he just knows (or doesn't care for too much), he will shake their hand or salute them. It's quite interesting to see how he interacts with family members. He is very friendly with my family and his brothers, but will only hug or kiss one sister-in-law. He loves to lightly stroke the heads of any of the little ones his nieces and nephews have.
He cannot follow any lists, although he can still read. Not sure about comprehension. His executive function ability is completely gone. He cannot be left alone for any period of time because he has NO judgement on what is safe or unsafe. That was the worst for me. Him being so dependent on my keeping him safe all the time.
I handle his declines day by day and try not to dwell on them. I know they are there but if I think too hard on it, I will lose it.
Deb112958-weare pretty much where you all are-dh hardly talks unless ask a direct question several times.He still knows who most people are and usually gets the name ok,but he has no personal everyday skills let.Can not get dressed-can not go to the bathroom alone (if so he will usually pee in the floor and roll all the toilet tissue off the roll and put it in the trash in neatly folded squares)can not be left alone at all because you never know hat he will do next(leave all the water faucets running,constantly flush the toilet -keep the refigator door open---pour himself a glass of pespi and watch it just run over the top and on to the counter and floor---push all the buttons on every remote he can find etc. you get the picture I DO NOT LEAVE HIM ALONE. He is starting to refuse to eat some days,just pushs his food around the plate. And STILL I try to reteach him all these things,knowing in my head that it is useless,but I must be either too dense or stupid to get it through my head that he can n ot and will not get better.Like beating my head against the wall daily and coming back for more the next day!!!
The hardest thing for me was to stop trying to tell him everything he was doing wrong and correcting him. Or I would get angry at him for his repetitive behaviors. He has FTD, that is one of the main symptoms of it. I still had to try and stop him. I have found it sooooo much easier to let a lot of it go. That has lowered my stress level a lot (antidepressants have helped too).
You husband sounds like he is further along than mine in his ADLs. Bruce can still dress himself, bathe, go to the bathroom on his own and make a pbj sandwich. His biggest problem right now is not always comprehending what is said to him and not being able to answer questions or really make it know what he wants. He answers most questions with a "yes", "no", or "I'm sorry". As he will now eat pretty much anything, I just make meals and place them before him. He has a good appetite and eats whatever is given to him.
Joan, I've been reading your blogs since 12/08 and have been waiting for one like your most recent entry. It sounds like you are reaching the acceptance stage, which is good for both you and Sid. It has nothing to do with compassion, but you are learning that you must accept what comes or, to be blunt, it will kill you. Keep up the good work!!!!
Joan, I agree with you about the fight being taken out of you, I gave up seeing this disease as something that I can do anything about a long time ago. My DH doesn't know the names of a lot of things and his sentences are getting shorter and shorter by the week. It is a good thing that I know him pretty well so that I can tell what he wants because he is very very picky and gets frustrated if he doesn't have what he wants even though he can't always tell me what they are. I also agree that if you try to fight the inevitable it can kill you so the best way I can describe it is the way it has already been described just go with the flow.
Very timely blog, Joan....I have been feeling the same way. Sometimes it scares me how calm and accepting I have become with each decline. And I have felt guilty for this and as if I , too, am lacking in compassion! I hope that is not true, and I really don't believe it is for you or I, Joan. I tend to think it is because we are on the road to acceptance, and are realizing we cannot change what is happening, we can't fight it anymore....and because we love our husbands, but we don't love what has happened to them! Carosi, I loved your last sentence: "When we respect them enough to help them finish the journey in dignity and love, won't we have proven our compassion?" Words to manage AD by!
one of my favorite quotes... "Experience: that most brutal of teachers. But you learn, my God do you learn!” ~ C.S. Lewis
You aren't losing your compassion. You are learning better coping skills. The longer you are on this journey, the more heartache you feel, the more losses you witness. It isn't that one ever becomes accustomed to them, it is more one stops rallying against them. Imho this is a great thing. It means I stopped wasting precious time and energy and could divert that extra attention to making Lynn as happy and content as I possibly can.
I think for most, the closer one gets to late stage, the focus isn't about us, but them. Oh it still hurts like hell… but in different ways. They have lost the ability to do the things that use to annoy us. They have lost most; if not all abilities….it is devastating, but also easier to feel compassion for our loved ones.
Joan, if losing your compassion is beginning to feel numb, then I guess I'd have to say that happened to me in the last few months of Eric's life. I think it was nature's way of not letting me react (hurt) anymore except in practical ways. Once he died, then all floodgates opened, and that was a good thing, too.
My husband was "diagnosed" with mixed dementia in January but in hindsight something was going on for months or even years. The personality changes really had me blind-sided. He was so angry, mean, and hateful to me that by the time I realised what was wrong with him I didn't like him very much let alone love him. This site has been a lifesaver. So many wives have reported the exact same things that I have gone through. I am better able to accept that he's doing the best he can with the ravages of the disease. With medications he is much easier to live with and I know that trying to cure him or change him is fruitless and will just wear me down quicker. I'm still very concerned and frightened about the future for us but I am also determined to do whatever it takes not to let this disease kill me too. When I read the comments I don't know how some of you just keep going, but I keep reading and hoping I'll be able to learn from all of you. Thank you Joan for this blog. Your compassion for others got this started and keeps it going. Sometimes just going through the actions of doing the right thing is the best we can do.
As always, Joan, you write about what goes on in my mind and, I suspect, in the minds of most of your site's followers. The reason why your site is so admired and respected is because you have that uncanny knack for writing about what so many of us are also thinking, feeling and experiencing. Just by reading your blogs and nodding our heads silently in recognition, we often feel better. Your blogs get us to think, to accept, to apppreciate, to get through this a little more easier than we otherwise would ... and you help us all to move on. Trust me, Joan, and I know I'm speaking for many others when I say this ... you are definitely NOT losing your compassion! Continue to get fully well, please!!
I think it becomes a blurry line making a distinction between losing compassion or losing/running out of strategies, coping mechanisms, responsive arrows in our quiver of "tricks". .What worked for "us" in the past is not working now. .As symptoms increase and manifest themselves, our bag of responding in kind needs to adjust as well. That is where most of my frustration sets in. .Relative newcomer to this site, but long time (9-10 yrs) living with EOAD. Currently, DW has lost ability to read or write. . .needs assistance dressing, undressing, eating. no computer skills, no TV remote skills, . can eat without too much trouble, but needs help with preparing food, etc .Can still grab a water or Diet Coke out of fridg. . Loves to sit and talk with "friends". Does some word substutution. other times can speak quite well and even displays organized thought. .mostly on how miserable her life is. .Has little problem expressing that at times.Other times can be very fluent and "with it" when talking to some friends on phone. .Had our 3 month neuro eval today. Vision continues to deteriorate, some cognitive decline as well. .I have companion care come into the house when I leave for work. I am continuing to work on my dual life. .I have to, in order to maintain a sanity. I do run out of strategies. . I have started the process of looking at care facilities. .Seems to be working all right with care companions coming in for now. I realize from reading posts that we, as caregivers, are just as unique and all have a story to tell as well as those we care for. We are all in a seemingly different place along the acceptance continuum.. Some are at the end of the rope, others are hanging by a thread, others have emotionally let go already. .In truth, I am at different places on different days. . There are some things that I have had to let go of. .. the list is different for many of us of the things we have let go of. . .