I have been saying right along that Sid knows who I am, and he does. Although he is now very deep into AD, he still asks the staff when his wife is coming. When I see him, he mostly stares into space and does not respond to me. However, if I ask him if he knows who I am, he always says, "Of course I know who you are. You're my wife." If I tell him that I love him, he tells me how much he loves me. I don't care what anyone says, I feel that our connection is so strong that even Alzheimer's Disease can't break it and that he will remember me to the end.
However, today I found out why he always refers to me as "my wife". He cannot remember my name. I asked him what my name was; he thought about it for a long time, but was unable to come up with it. I said, "My name is Joan". He nodded slightly.
Rather than be devastated as I thought I would be, I was just sad that he had lost more to AD.
I have to be grateful that he knows who I am, even if he doesn't remember my name.
Larry called me "Elvira" for the last four months or so. (He had a sister named Elvira, but I really don't know who he thought I was.) Just one time…and I treasure this memory…amid all the agitation and yelling, poop, difficult transfers, constant toileting,spilled food, sleepless nights, demands to "go home"…he suddenly put his hand on my arm, looked deep into my eyes, and said, "Liz, I love you."
For a few seconds there, it was him and me again, just like always. But never again.
We live in western Canada and my husband's son visited recently from Denmark. He last saw his dad in the fall. My husband had no idea who his son was.
So far, my husband refers to me as, "My wife Katherine." I am glad of that but know it might change. Lately, when I first arrive he looks at me for a few seconds before there is any recognition. It is truly sad all we endure as spouses. It is those precious moments like you mentioned elizabeth that get us through.
What Alzheimer's Disease has done to our spouses and us as Alzheimer Spouses is incomprehensible to anyone who has not been through it. It's incomprehensible to me, and I'm living it.
I think that when he says he loves me, it is coming from his "emotional memory", which I do not believe ever leaves them. It certainly isn't coming from his actual memory, because he does not remember any of our life together. Nor even my name.
When I called this morning, the nurse said that he was more alert than yesterday. I am leaving to go there in a few minutes. I have no idea from day to day how he will be or how he will react to me.
And yes, Liz, it is very rare now, but he has had moments of returning. A couple of weeks ago, he was napping; I was sitting by his bed, tears flowing. He woke up, and with the old concern for me in his voice, he said, "What's wrong? Are you okay? Why are you crying?" I told him that I was just sad that he wasn't well, and in a flash, he was gone again.
If anyone wants to know what it is like in Hell, I can tell them that it is living with Alzheimer's Disease, either as a patient or caregiver.
Sonny never called me by my name. It was always Honey. But now if I don't come for lunch he will ask the aides "where's Mary" It usually takes him a few minutes to process who I am when I get there,but some days he puts his arms out to hug me and gives a broad grin.Yes,Joan, it is like living in hell.Never know what to expect,but thankful for the few good times.I guess they will be coming to an end in the future..
I have written before about being an RN with a full time career spanning over four decades. I have nursed every condition humans are asked to endure. I now fully believe and tell everyone who will listen that dementia/Alzheimers is truly the worst disease that exists, both for the person diagnosed and their spouse.
Most people look at me vaguely with that comment and do not respond. As you said, unless you live it, one has no idea. No idea. I didn't even as a nurse surrounded by this disease all my career. I knew it was big and awful but had no idea of the ever ongoing losses, endless struggles, and heart ache.
I truly would not be making it without this site and all of you here.
Right, Katherine. I saw Alzheimers torture so many families…but the nightmare cases were when it was a couple, and the spouse was the caregiver. Those poor, exhausted, lonely, crazed spouses. I thought over the years (and I've been an RN for 44 years) that there was nothing I could not deal with except being an Alzheimers spouse. It was my one real reservation about marrying someone 25 years older than I…I took a good long look at his health, and knew that with his family history and his own cardiac status, that I had to prepare myself to come home one day and find him dead on the floor from a sudden heart attack…like his son and his brothers. I used to say half-jokingly, because I didn't think it could happen to this mentally sharp, vibrant guy…"Well, as long as he doesn't get Alzheimers. I can handle anything else."
Heh, heh, heh... you all know the rest of the story.
Joan, I totally agree that living with this disease is hell on earth. My husband knew me up until 3 days before he passed. He could not say my name because most of his speech was gone but he knew me. Today I am so grateful that he went quickly. I am also so relieved I can hardly put it into words. Although it has only been 3 weeks, I have not shed too many tears since he passed. I shed most during the last 7 years--especially when I placed him and had to apply for Medicaid. I liken the Alz journey to a war--God willing the caregiver comes out bruised, broken, exhausted but hopefully alive. I have been reading about grief and I have learned that actually some caretakers are so emotionally exhausted by the time the loved one passes, that the grief does not start right away because they have depleted their emotions. Thank you for this website. It has been a life line for me.
This wasn't an Alzheimers case, but one of my previous supervisors had brought her mother up from Florida, found her a place to live in a senior multi-level of care facility, and was the primary caregiver until her mother died…apparently a lengthy and difficult course. She told me that she could not even begin to grieve her mother's death for one solid year…because she was too physically and emotionally exhausted to grieve.
For me, there was no delay. Anticipatory grieving didn't prepare me for the "real" grieving when Larry died. It started the minute after he drew his last breath…although I still have to marvel and be glad and thankful for the look of total peace and relaxation on his face. Wherever he was, it was good for him, I guess. Bad for me, but good for him.
(Sorry, I didn't mean to change the subject of this thread.)
Joan......My name was The Other George .........(I may have posted some of this before, But I can't remember it.)
THE OTHER GEORGE Dec.11,2011
Memories of the really bad times, seem to be so far in the past, and so unreal, it's like a bad dream, that never really happened. I have the crazy notion that my life has been enriched by it all. I have to admit that it's been a learning experience.
I'd like to share a memory from the worst times. She was in the stage of partial incontinence, where I had to dress her, bathe her, ect. She recognized me as two different Georges. Sometimes I was the Real George and sometimes I was the Other George. In the evenings we would sit on the sofa holding hands, watching the TV, and she would ask me things like "What is your name?" and I would tell her "My name is George". Then she would say "You're not George" and I would tell her "I'm the other George" and that would satisfy her. Then sometimes she would ask "Where's George?", and I would say "They called him and he went down to FDS".(FDS was the place he used to work) Sometimes she would ask "Are you married? Do you have a family? Do you have a car? How did you get into this house?" and I would always give her an appropriate answer and she would be content. With me playing the part of the Other George, we could spend a fairly nice evening together.
When we were playing around in bed at night, she would say things like "I'm not supposed to be sleeping with you". and "What if George finds out about us?" And I would tell her "George won't care, he just wants you to be happy" And sometimes she would tell me about fun things she and George did together. Other times, she would tell the other George that George was mean to her.
At times, she would be very hostile and I would have to use force to bathe her, to get her dressed, to get her to sit down and eat, or to get her to sit on the toilet and at those times, I was the Real George. Through it all, if I was trying to get her to do something, I was the real George, the mean George, but if things were going smoothly, I was always the other George.
For her last eight months, I couldn't care for her at home anymore and I had to place her in a nursing home. and though I visited her for three hours every day and would hold her hand and talk to her, I was still the other George. I think she enjoyed my visits but she also enjoyed being close to other men. Either other clients or the staff that worked there.
At the stage she was in, there was not much for her to be happy about, and when as she sat in her wheelchair in the hallway and would reach out to the janitor as he was walking by, and he would stop and talk to her and give her a little hug, I could see happiness in her face and it made me happy also. No matter what the situation, I still loved her and slightest smile on her face meant the world to me.
I.ve learned that for a dementia caregiver and spouse, Happiness is very difficult to find........I wholeheartedly took what I could get.
When my DH was in a care facility, he took up with a woman there and introduced her to everyone as 'my wife, Betty Lee.' He never called me anything else. I took this to mean that he had recreated the life he really wanted, to be married to Betty Lee, and it was fine with me. And I know that he knew it was my feeding him his lunch the day before he died, the connection was there.
The day of his funeral I sobbed alone in private, but at the service, it was like a party. I asked myself, 'where's the grieving widow?' and my answer was that 'she came and went a long time ago.' I have a pretty good life now with a gentleman friend, we do not live together but I am content. It's been a decade since DH left and while I often think of him my life goes on, but sometimes.....
George says that the slightest smile on Helen's face meant the world to him. That included her smile when she was hugged by the janitor in her nursing home. I understand George 100 percent. Like him, my spouse's happiness makes me happy also, and I will take whatever happiness I can get.
I don’t care a whit if my husband knows my name or even if he remembers me. All I care about is that he is happy. Nothing else matters anymore.