Many of us have seen the monster in our loved one's eyes. We hate that monster. When I look into my husband's eyes now all I see is nothing. Not even a soul. Is he still in there?
My husband is nowhere near that far along, but I remember seeing my dad with the blank look. My mother was always sure he was there and that he knew her at some level, but I was never sure.
I'm sorry about what you are feeling, bludaze. It must be so incredibly hard when it's your husband at that point. What do you think? Is he in there?
bluedaze, I am not there yet even though I see that blank look in his eyes sometimes. I don't know if the Alz has taken over and he is not here at that time. It is so hard to deal with. I don't have the answer to that question either. Only what I guess is going on at that time.
Many caregivers have reported ADLOs that far along who suddenly have a few minutes, or even a few hours, of lucidity. Yes, he's still in there ... possibly just sleeping when you can't see him.
I do believe they are in there......they just can't communcate the fact. About a year ago, my husband who was in the depths of end stage AD for years, caught my eye one day while I was in his room and he said as plain as day, "This is a hell of a way to live." Well, I almost fell over since he hadn't spoken more than a guttural utterance in years. But, by that time the "light" had gone out again and he was gone to wherever they go. He, on several occasions before that, would beg me to kill him...and he would cry. I hated those times....it was much easier when he was just "away" and I could take care of his physical needs without having to think that he realized how awful his life had become.
bluedaze - Does your husband seem peaceful or distressed? I think we have a dimmer switch that can never be fully turned back on. At this point I estimate my DH's quality of life at 1%! He is so distressed and what we are doing with pharmacuticals isn't a big help. I am just grateful that he sleeps as much as he does.
I, too, experienced moments of normalcy when DH was, otherwise, out of it. At one point my son said to me, 'Mom, he understands what you're saying, don't say those things in front of him.' He was right, of course, and when I realized that, I stopped, but, yes, absolutely I think they are still in there, but maybe not the way we think. DH understood love & affection--if not from me, then from others. If it had happened, I'm sure he would have felt being mistreated or abused. Hearing is the last sense to go, if they are not already deaf, so they do understand, maybe not everything, but certainly some. DH showed happiness and often deep love when I walked into the room--and, yes, he showed it with others as well. So they are in there, but maybe no longer connected to us the way that they were, but still connected to life, to people and feelings, that's for sure.
Betty-I wish I could believe what you said. It would give me such comfort. Bill looks at me the same way he looks at his lunch. I don't think he knows there is a person who cares about him, I have brought old pictures and mementos of our life together with no effect what so ever. When I brought our 15 year old cat to visit Bill looked at the poor boy like he had never seen a furry critter before and made no attempt to touch him.
Yes, Blue, the time came when DH did not respond to our dear doggie, I know what you mean. Photos & mementos did not get a response either. The connections between us, our life together, were gone, but he had basic human reactions to others. But each LO is different, I only know what I observed with my DH. Well, you may be right, DH did light up when he saw me and he'd light up at lunch, so who knows. And I personally knew of others who did not respond to anything for a period of years. That having been said, I wish to God that none of this ever happened to any of us, and you and all the others going thru it now have all my understanding and compassion. I just that one could do more.
It's so hard when one minute we're talking quite normally and then the next minute, the light goes out. We were driving home just now (I was driving, as usual) and he asked me why I didn't come in and visit for awhile. Boy, that threw me for a loop. I said "What?" and he repeated it. Then the light came back on and he realized what he had said. Those moments really scare me.
Oh Bluedaze, I'm so sorry you are going through this and I don't know how I'll handle it emotionally when this happens to us. We had a birthday party today for one of our grandchildren. He enjoyed it but this evening he didn't remember. I had to tell him about it. Like Carolyn said "those moments really scare me." They also scare him.
Bluedaze, is your husband in stage 7? How long has he been in this stage and how long has he had AD? Thoughts, love and prayers go out to you.
Dazed=Bill just had his 73rd birthday. He has FTD. He was fired from his last job due to rages at age 64 but had "personality issues" for a very long time. He is stage 6-7. My girls are very supportive, Son trying to avoid the issue.
Bluedaze, so you've been traveling this awful road for 9 years? How long did you keep him at home? How in the world have you coped? Are you still sane?
I kept Bill at home until he became a danger to himself and others. He took his car and disappeared for over 24 hours. Walked around the neighborhood with a knife. Police were starting to know us. Our bank, insurance company and almost our broker cancelled us because they wouldn't deal with his hours long telephone rages...Took its toll on me bigtime. He escaped from locked facilities and I couldn't find any place that would take him. Didn't care if either of us lived or died. I am having a big problem trying to remember the good times of a 48 year marriage-but not doing too well at it. He is a frail, pathetic little person in a safe facility now.
Makes me ashamed for complaining about DH just forgetting things. Sounds like FTD is so much worse than regular AD. My DH is truly a darling. I just feel so sorry for him and there's nothing I can do to help.
I believe that there is someone in there with them. With my husband in a facility, I do see all of the residents and "talk" to many of them. There are some that are almost comatose most of the time and every now and then I will look in their eyes and yes, there is someone at home.
I always hug my husband and tell him that I love him. If he wants to walk, I will walk round and round with him while he holds my hand. Today towards the end of my visit, it was time for him to go down for a nap. He asked me to stay with him. So I stayed until he fell asleep (all of five minutes).
There are times (coming more frequently now) when noone is at home and he does not see me at all - at that point I am just a body. However, even then, there is often a moment where he will "wake up" and say a one liner that is totally appropraite.
When all else fails to reach him, he usually likes to hold my hand whether we are sitting or walking. So in his case, the touching of another human is important to him.
When he was in the psych ward, they had seriously over medicated him and he was very unresponsive. He went from knowing me, talking to me (mostly nonsense) to not moving and not talking in less than a month. That big a change in such a short time was so difficult to deal with. It was such a blessing when I moved him to the facility that he is now in where they reduced most of the meds and he started talking and walking again. In a way I got a taste of what is to come and a reprieve in how he was. Even when he was at his worst, I always thought that there was still someone in there that just couldn't get out.