I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I think many of you will relate, and I would like to hear your comments. Have you experienced the same "different kind of love" as I have? How do you feel about it? How do you handle it?
It sucks! They are totally dependant on you, in my case DW knows this and appreciates all that I do for her. She at time can be difficult, wanting what she wants, when she wants it. I usuallt take the path of least resistance. You come to the understand that the love has morphed to what it is, Parent Child and now you need to care for your child that was once your lover. It sucks!
My DH has been acting like this for about 4 years before the dx. It was one of the most difficult things to come to terms with. Once the dx then I understood what was going on. I had the child/husband long before the dx here. It has been a long road......without the love of a husband. And still more road to travel. moorsb, you are right....it sucks!
Joan, you described my life to a T. As an example, two evenings ago he called my daughter, who wasn't available at the time. She later called and I answered the phone. I talked to her a bit and called my husband and told him she was on the phone. He was lying in bed, watching TV. I was in the family room two levels down. He asked me to bring the phone to him! And, got angry when I asked him if he was unable to walk. After he got the phone, he literally slammed the door to his room to let me know how angry he was that I wouldn't bring the phone to him. If I told him the next day what he did, he'd say he'd never do something like that.
Joan, I am not glad that this is happening to you but I am glad that you feel this way because this is the same way I feel about my DH not loving me anymore as a wife but loves me for what I can do and do do for him. It lets me know that it is alright for me to feel this way too because you have been going through this disease a lot longer than I have. My DH told me that he feels different towards me so yeah! I know exactly how you feel! I have a child, parent relationship too.
This is an idea that needs to be thought out whether it might be helpful or not.
Most of the compact digital cameras have a movie feature. I have a cheaper Kodak from 5 years ago and with the memory chip it can do about a 2 minute movie with good sound.
The thing is it doesn't have to be obtrusive or subversive. It can be held with one hand and slipped into the sweater pocket running and still capture all the sound. The movies can be downloaded to the PC or kept on the memory chip and almost all TV's now have a front plug in where it's dead simple to show the pictures or the movie on your TV.
This may or may not be helpful in situations where sundowning or in some cases sceaming or bullying because of the disease may be involved. It needs to be thought through if there are cases where it would be helpful to either have a record or show the truth. We have to think out the reaction that is likely and whether seeing their own behavior would be helpful, hurtful, or destructive.
It is a technology most people already own though many don't use.
This can also be used to create memories of what we still have. I have a few minutes of my wife having a pretty good time last year and laughing. I've stored it on my PC and I may want to look at it later or not.
Joan, I know exactly how you felt when you asked your DH to put his own stims on his knees. I would just have parked my butt in the chair after getting dinner, cleaning up, and picking up everything that has been left around when I hear "I'm hungry. WHen are we going to eat?" If I don't get up right away he is rummaging through everything and making a mess. I am dealing with a bad back and it doesn't make any difference to him as long as his needs are met. His love for me is tied up in his needs....just like a child. But even a child can be reasoned with. I love my DH but it is more like the love of a caregiver for her charge.
Wolf--your idea of recording problem behaviors and then showing it to the LO is an imaginative one. However, I think the flaw is that it would require the ability to reason on the part of the pwd for it to be effective. When shown the recording, I think most dementia patients would deny that it was them; or say that the recording is a fake, etc. Don't forget, they usually have no memory of the behaviors after they happen. I do, however, think there would be times when it would be helpful to have the proof to show to adult children that are in denial about the situation, to doctors, etc.
Yes, we are now in a parent/child relationship. The big difference is that you know a child will begin to accept responsibility & start to do things for themselves because they want to be independent. Our LO’s will only digress & become more dependent.
If I recorded my DH and later showed him the way he was behaving, he would be extremely hurt and angry at the same time. I think (although I don't think he would admit to it) he's finally beginning to realize what is happening to him. He is in denial and I'm not so sure that isn't okay. It keeps him going if he can believe things are fine. To show him what is happening to him, even though, deep down, he knows, I believe would be cruel.
I know I complained above about him wanting me to do something for him he could very easily do for himself, but I wouldn't intentionally hurt him. I do agree with marilyn above that it might be a good learning tool for relatives who are in denial, because, as we know, dementia patients can look fine to someone who doesn't deal with them on a daily basis.
I miss the man he was, and it is very lonely without him.
Wolf, Some time ago I got a small video camera to do just this. I have since, due to a camera failure and no back up, got a nice Nikon that has a video feature to it which is so easy to use ( Nikon D5000. It was a stroke of very good luck as my other cameras are professional level and for quick grab and snap for just those situations where sometimes a snap is good and other times a video is needed this is easier than having a camera for stills and one for video at hand..there are other cameras that can do this too...it is just what I use as I have all kinds of lenses for zoom, wide angle etc... I got this for reasons of showing not only the doctors but family who don't get it as well. So far I have not had to use it for those purposes but I am at the ready. I would not bother showing it to my DH since he would not believe he did this besides I would not want to hurt his feelings about something he wouldn't remember anyway.
The first year after the non-dx was living hell for me. I got blamed for everything at every time. If the toilet paper was put on backwards I was doing it to prove my point that there was something wrong with him....etc. It was truly HELL for both of us. He denied anything was wrong, I was punishing him for whatever, he yelled, I cried, he cried, I yelled. After this first year he finally talked to our doctor and the doc explained in simple terms what was going on. Since then life has been more quiet for us. DH can't manage his own meds anymore, has more memory problems but KNOWS he has these problems. He also has Parkinson's which certainly doesn't help the dementia. DH is a very mild mannered (formerly very intelligent) man. He apologizes for everything and thanks me for anything. We had dinner with friends tonight and I had a chance to have a private chat with our male friend. He and DH had been out for a beer the night before and talked at length about DH's illnesses. Our friend (mike) told me that he has really noticed how quickly Tom has digressed. He is great about taking Tom places so I can have an hour or two to myself.
We bought a camper today. Used to camp on a regular basis but gave it up when it entailed ME doing all the work. I was tired of it and couldn't relax when we went out for just a weekend. After much thought I decided it was time to buy a camper I can drive and set up. Since I am now retired we can for for more than just a weekend and hopefully enjoy the great outdoors together while we have the chance. Our friend agreed that this was a great idea as he doesn't see us enjoying this together for more that 2 summers (the way Tom is going downhill). And if I can't get it parked just right we have friends who will drive out and help us. It makes me incredibly sad but also happy that at least THIS summer we can have some time to make memories for ME! Tom asked me last night to start writing down important dates like his Navy years, our anniversary and birthdays so he can have something to refer to when he forgets these over and over. We also talked about in-home respite so i can get out and feel okay about leaving. Tomorrow I have to keep the grandkids in a town an hour away and he is concerned about what to do. Luckily our 18 year old granddaughter lives with us and she knows the routine.
I am so scared when I think about what the future brings for us. Right now everyone says they can't believe how I do it but I don't see it as THAT bad yet. What follows is the scary part. Tom is 60 and I am 59. He has dealt with dementia and parkinson's for 4 years already and is going downhill quicker than I would have thought....even with the meds..
And as far as a different kind of love....I love Tom unconditionally except for the romantic "in love" part. That changed when the disease changed him. He will always be my best friend but not my confident anymore cause he doesn't remember what I confided. I now love my best friend. Nothing romantic or sexual anymore do I feel.
And that.............the disease changing the "in love romantic part" is what is breaking my heart. I miss it terribly. I miss him terribly. Sid was around 60 when the subtlest of changes started. I was 54. He is now 68 and I am 62. As 'ol don' says - it sucks.
The disease didn't break the romantic part of our lives...diabetes did..and the now famous ED. So that has been gone for years. But DH is the same in that respect now as he was then..always generous with hugs and kisses.And as others have said, he always thanks me for everything I do, is always so glad it is me and has always said " If you plan to run away from home, let me know so I can go with you!" He would say that when he was well...He would be my pick all over again even if I could see this coming. However if I had seen it coming some things would have been done differently..like all our vacations would not have been to go see the kids or the folks. That was his idea and until our 25th anniversary we really had not taken any kind of an adventure trip..that time we went to England, Scotland, France and Belgium. I would have raised more of a fuss about that part of our travel lives.
Now I find myself fighting being annoyed at the kids who would rather go to a song writers fest than come see their dad for his birthday. He may not have a birthday next year. I told them what he wanted for his birthday, that all of them come here..he would even help with airfare..One might make it..I am not holding my breath.
I remember saying sometime ago that i rationalized the caregiving stages somewhat comparing to a lioness caring for cubs. when they are first born she takes them away from other family members so she can dedicate her whole to them to keep them safe, fed, thriving. then once they stabilize she takes them very cautiously back into the pride to let them become part of the group. some dont make it some do. she defends them and her death IS an option at this point. if they are threatened she would kill even a close famiy member. once they become annoying toddlers and more able- she turns a blind eye and begins to wean herself now from them. then basically she knows their survival isnt based on her care anymore and moves on with her own life knowing at this point, death is an option for them. i see alot of correlation in our caregiving as well with AD.- protectors, survival, self sacrifice, then finality knowing we have no control over life/death. i think the love that stems for our spouse does change as the others say, from, desire, respect, learning from our spouses, sharing, etc to one of caregiving as we do for our children. the detached type that we know one day we have to turn them loose but love them unconditionally for what is/was. divvi
Before DH was diagnosed, I thought about divorce. His behavior was so strange and I didn't understand. Sometimes I wish I would have gone through with it. But, I'm doing what a good wife would do, take care of him till the end. I would hope that is what he would do for me if the tables were turned. There isn't any love anymore. Not the kind I knew. The disease has taken him away from me and given me a child in an old man's body. A body I don't even recognize. I have no romantic feelings for him. We were out one evening and I looked around at all the couples laughing and talking and enjoying themselves. I looked over at DH who was staring into space. I felt like crying. I carry around a shield of armor. Sometimes it gets really heavy and i put it down for a rest. Then sure enough I'll get hit with something and it hurts. Funny thing about this disease of his, It has made me talk to myself. I tell myself that I am only human. I am not super woman like I think I am sometimes. I am human and I will get hurt. I grab that armor and start over again.
Wolf, just read your post. I understand your frustrations...everyone's frustrations.. with the outbursts and cruel words. Of course, they don't remember them the next day.. My question is "Why is it so important to PROVE to the demented partner that they were mean and cruel. Do you think they will remember that the next time they are frustrated and it will stop this behavior. Of course not. It's sudden, unreasoning and uncontrollable. If they could reason, they wouldn't do this.
I don't understand anyone wanting to PROVE to their partner what a lousy person they were yesterday since they cannot remember. Why make the pain and suffering worse by proving you are RIGHT and they are WRONG. This doesn't minimize the pain you felt when he was screaming, I understand. Been there, done that!!! I just don't get the "PROVING IT TO THEM" motive. Nancy B*
Please check out this blog from 2 years ago about early undetected Alzheimer's Disease being the cause of divorce - http://www.thealzheimerspouse.com/ADdivorce.htm
Mag, you really hit a nerve when you mentioned looking around at all the other couples who are laughing and talking and having a good time, while your DH is just sitting there staring into space. This happened to me every day before he was placed four months ago. Living in a retirement complex, we'd go to the dining room for dinner and always sit alone, since he no longer socialized with anyone, and, as we sat there in silence, I'd look around at all the people who were acting like normal people do and it just made me so sad I could hardly make it through the meal without crying. Now that he's living at the ALF of course I'm terribly lonely, but probably not any more lonely than I was when he was here, but not really here. This disease makes me very sad and also angry that this wonderful guy has been snatched away from our golden years together. I just turned 80 and I guess the loneliness will never go away.
Sheila, we also bought a small camper last year (an r-pod), but we didn’t really get to use it. I’m hoping that we get to use it this spring & summer. I too will have to do all the work myself because DH can’t follow directions at all. I won’t mind doing the work as long as we enjoy ourselves. We live an hour from Washington DC & I’m hoping to go to some campgrounds close to historical sites like Gettysburg, or Williamsburg. My DH is still very social, but I have the little business cards that say he has AZ in case he gets carried away while talking to people he doesn’t know. My DH is also Tom & I still love him, but like you said, it is a different kind of love. I also feel so sad when I see other couples laughing & enjoying themselves. It just reminds me of what I am missing & will miss in the future.
I recall feeling so sad in the Grocery stores.... watching other couples shopping together... and wondering "why isn't that us?". Before he got sick, I doubt I ever noticed couples shopping together. We took so much for granted, didn't we?
Joan and others are fortunate cause you have memories of them saying sweet things, even now saying 'I love you' even though it is a different kind of love. I can't remember the last time my hb said ' I love you'. They were words we didn't say often, but they were said, especially in the earlier years. About 15 years ago is when he started having ED. I got him to go to the doctor once who prescribed viagra which didn't work. I tried and tried to get him to pursue the issue but he didn't. He choose instead to let my take the blame cause I had put on some weight (not near as much as now), so was undesirable. I use to get occasional 'thank you's' but again, I can't remember when the last time he said it. When many of you write how your spouse will tell you they love you or all the thank you's I cry inside. I would love to feel he at least appreciated what I do. Last night when we were driving back from Yuma I was talking about the decisions I have to make concerning our future; how I feel he won't be driving much longer, probably a year just depending on how fast he declines, etc.. His only comments were 'I hope I don't go fast' and 'I know it isn't easy on you'.
I know he wants to stay where the sun shines most of the time but I also have to consider the long term picture. All I ever get is an occasional 'I know it isn't easy' - never 'I love you' or 'thank you'.