I think my dh knows that he is very ill, but not real sure he knows what makes him ill or why. He did say after the hospice people kept coming here and the hospital bed and other equipment was delivered .... "guess I am going to die.". I made very light of what he said, and replied "Aren't we all". I told him the bed was because I needed it to help get him in and out of bed. That is the truth, but I also needed it to be prepared for when he gets even worse. I believe he knows more then he lets me know about his condition, but doesn't want to talk about it so he says nothing and I say nothing. He never ask to go out and eat or to go anywhere.
For two days he seemed a little better and now today he is not good at all. Just when we seem to adjust to one type of behavior from them they throw us a curve ball...like saying...."see I fooled you again".
My DH never knew what hit him. it was a blessing for me to know he did not have to dwell on his eventual future and how his condition would affect him and us. if he did i think i would do the same and try to make light of it and change the subject if possible. as it would do no good to bring it to the forefront of how his life would end. divvi
My DH knows and, Oh how I wish he didn't. He talks about it a lot and wants to know if it will get worse! What to tell him??? I usually wing it and try to divert - but that isn't easy sometimes when he gets obsessed with it - or anything. He usually will end up say, " well, this is no way to live". Oh, how true.
Lloyd doesn't seem to realize anymore. When he did know, he would just cry because he was afraid of dying. Then I would tell him that I will be here with him right up to the very end and that I will always love him.
Claude never realized until close to the end that anything was wrong. About a month before he passed on, he would start to cry and ask me what was wrong with him.
My DH NEVER acknowledged that anything was wrong with him, even when everyone else around him knew that something was wrong &even after he was let go from his job because he was having problems doing his job. He would not go to the neurologist even after our PCP suggested it & it took our kids having a mini intervention for him to go. Even after the neurologist DX early dementia he always said that there was nothing wrong with his memory. He still doesn't know that anything is wrong & I believe he never will.
She didn't want to know. I kept up the pretense until November 2010 after which I needed some help because she was well into what some people call stage 6 and could get into trouble 24/7.
I found notes though and still find them. "I have to do better." and other heartbreaking things. She was scared inside and I believe they all are during the earlier stages when much of them is there but pieces keep falling away.
"What's going to happen to me?" she asked one day crying softly. I told her the truth. I always told her the truth. It must be so hard on them.
If they ever say thank you somewhere, I think they mean that. My wife never did; but, I know why. She couldn't find the strength inside to acknowledge it in her mind ever and I don't blame her.
My DH, God Love him...does not understand that he has this disease..he knows his sister has it but of course he forgets it and then when something about her comes up, is feels so sorry for her...When we go to one of his many doctors, he always says " I feel great! I don't hurt anywhere..I am doing pretty well for an old guy...and when all his labs come in, considering the conditions he has he is doing pretty darn good. But his walking is slow and balance is bad, he has a 5 minute loop for recalling what I just told him, he is back in the 1940s now..all that is on TV is WW II all about Hitler unless there is a war movie, or kick boxing etc. He can't recall 30 minutes later that we had something for dinner or lunch and he will often say " If you didn't set up my medicines I know I would forget to do this.." He always demonstrates appreciation for what I do and is always asking " Do you need help?" and of course I need help but what I need help with is now beyond his power to do.
My DH is the one who DX himself.He told the Dr.he had it but the Dr. said it was stress.Two yrs. later we chanded Drs. and the new one confirmed he had AZ.He was less frustrated when the Dr, confirmed it.He does not realize it is terminal. His Dad had it{called someting else back then} but died of heart problems caused by asthma. Physically he is pretty good, can't remember more than a minute,has trouble absorbing what is said to him,which was one of his early problems.Eats too much because he can't remember he just ate and is gaining too much weight.
DH has only acknowledged it once shortly after he was dx'd-and only after I forced him to acknowledge he has dementia. Since then he's never mentioned it and tells me and everyone else that he's fine and is perfectly healthy. Besides the dementia, he is perfectly healthy, no other illnesses.
L knows she has it but she also has a TBI so she probably thinks more of her condition in terms of brain injury than of FTD. But she knows she has it, is aware of her anxiety and accepts that she cannot do certain things. But she has no concept of how her behavior affects the rest of the family (except a few times she realizes that she may be the source of some of our son's problems) and doesn't realize how she appears to others. I think she might be becoming less aware of her dementia. She reads about FTD every once in a while and the only comment she makes is the expected life span (she is scared of dying).
Death and placement are not issues in my house. She crys because . . . . "I dont know!"
She gets upset at the drop of a hat because she doesnt "understand". She knows she should understand, but she doesnt and that scares her and then the crying starts. Her anxiety is off the wall. She keeps thinking she can know but when she tries to understand she just feels stupid. It all confuses me sometimes!
I equatate it to landing in a strange city on a rainy night and trying to find a place in a rural unmarked area you have never been before using a hand written map and poorly worded directions all while driving a rented car you are not familar with and also being worried because you should have been there over an hour ago.
You believe you SHOULD be able to accomplish the task but realistically there is so much going against you that you should expect yourself to fail, but you really dont want to fail, so you keep trying and you keep failing . . . .
If this happened you, you would just pull over and cry. She cant pull over, so she just cries and cries and cries.
My hb does too - when I get frustrated he says 'why don't you just put me away' and go on with your life. He doesn't know how much I really wish I could but I don't say anything back when he says it.
I think dh doesn't know anything is wrong with him. He keeps wanting to do things that I know he cannot do such as mowing the yard. The last time he attempted this he wandered all over the field and I kept going out and telling him where to mow. I'm glad he doesn't realize that he has what his sister had. He saw her in the nursing home just before she died and he said he wished he hadn't even gone. I wouldn't go because I just didn't want to see what had happened to her and of course she didn't know anything or anyone at that time. She died shortly after his visit.
My Dh wont talk about it. When we go to MD he jokes around, says he is fine. He talks about dying a lot anymore, seems pretty anxious to go. I think he knows, but he doesnt want to acknowledge all that si happening. he is very appreciative of me and all I do. He never was the first 41 yrs of our marriage. He was very selfish. I try to not remember those days but it is hard.
I think DH has come to terms with it in some areas. He put up a little argument when I told him he should not renew his driver license ... but then he was OK with it. He doesn't argue with me about bills or the checkbooks anymore. He's become a lot more - what's the word? - resigned?
He still wants to renew his professional licenses each year, so I pay for those -- knowing he will never practice again. :( I guess at some point I should just let them lapse and not say anything to him. He's paying an "inactive" rate, but still ...
3 years ago, prior to expressive aphasia becoming so overwhelming DW was DXed with stage 4 bowel cancer and required chemo. The surgeon, Oncologist and I were in shock when she clearly stated I'd rather die of cancer than of Alzheimer's like my mother. No Chemo! The first six months after being DXed in O7 she talked of nothing but AD, her mother and suicide incessantly and then gradually evolved back to her happy self.
Once in a while my DH would accept a simplified explanation of something about his VaD Dx, which was happening right then. Most generally he considered any talk--BS. Thankfully, he was always excellent about taking his meds. He seemed to get that they helped him alot, to be less anxious and confused.
When the Cardiologist refined his CHFDx, he told DH 3 times, what the problem was and how bad. DH didn't understand, nor retainit. Th NH sytaff,osoice, and I workedto get the information into him in tiny increments. Then a helpful relative told him he was going to die withn the year. THAT HE GOT. Upsethi m big time. NH Staff, Hospice, The Dr. and I all worked to calm him an d help him put it into a perspc ti ve he coul;d handle. During my last visit to him, he brought the issue up . "I only have a few months. The Dr. says they can't fixmy heart." I responded, "No, they can't fix it. But, only God knowswhen you'll die. When He tells you, then you'll know. Until then we aren't going to wory about it. whe the ideas about hat come in yor head, I wan yo to think about seeing your Mom and sister again Meeting my Dad, and don't forget allthepets at the Bridgqwaiting for you--Tesie, Chantey, Nixie, uty, Luna and the est. Your'e going to have a whole army with you when you get to the Gates." He smiled and chuckled just a little bit.
We never know what our LOs will retain or come to understand. I optednot topush knowledge but rather to answer what h'd ask. Used the KISS rule.
My dh was over 75 when he started not being able to express himself. He asked me what was going on. I told him it was an age-related issue and we would have to compensate for it. Memory started disappearing and I know he realized that but he never brought it up. Because he had no real physical problems, he didn't concern himself with memory issues. He will be 86 next month and I am so fortunate I still have him with me. I will not let him undergo any anesthetic unless absolutely necessary. He just sees the pcp who monitors heart meds and light anti depressant. How long this will last no one knows.
My DH and I have never openly discussed his diagnosis. He's always been a rather private person so it doesn't surprise me that he never confided his struggles with me. However, he did admit to our daughter about three years ago that he was having difficulty backtracking while driving. I have often wished he could be more open about it, but I don't think it will ever happen. On one occasion when I gave him his meds, he muttered under his breath, "It doesn't help" so he does know on some level that his memory is poor. I sometimes wonder if it's just male pride and wanting to remain strong and in control. I guess I'll never know.