I was annoyed with my daughter for not visiting hubby very often. But then I learned another tough lesson this disease does to the family.
We were visiting myself, daughter and granddaughter and he call our granddaughter by our daughters name. I said to him if you think that our granddaughter is our daughter then pointing to our daughter I said "Who is she?" and he said "I have no idea".
Well the hurt in her face would just make your heart break and as a mom we never want to see our child hurt like this. She kept it together until she left the facility and then she just broke down. And this is why she doesn't visit very often. I can't blame her.
Amber, I am sorry that you had to absorb the grief of your daughter, as well as your own grief.
I’m also sorry that your daughter does not visit her father because he no longer recognizes her. It is not just the spouses of our demented family members who must come to grips with the effects of their illness – it is their adult children, too.
I speak from experience. Like your daughter, when my sisters and I were in our twenties and thirties, our father had Alzheimer’s. It was devastating for us to see how the disease destroyed his relationships with us. But if we had allowed our grief to dictate our participation in our father’s life, he would have had only one visitor – our mother.
On a new thread (“It goes both ways”) abby*6/12 wrote something that also speaks to Amber’s point about what this disease does to a family.
abby said that other people who must deal with this disease are the parents of the demented person and the parents of that person’s spouse. This is the case in my family. Although my husband’s parents are long gone, my mother is still with us at age 97. I know it is painful for her to watch what I am going through, since she went through it with my father. It must also be hard for her to see my husband’s decline, for like the rest of my family, she is very fond of him.
Amber,please do not be too upset. I think it is very common for AZ patients to mix up their children and grand children. It happens all the time with my DH.We have 4 granddaughters and it gets very confusing for him. I hope your daughter can look past this and show her love to her Dad. It was very hard for our DD but she continues to visit him even though she said he has never says a word to her any longer.
OK I've had some time to go and thing about your responses and I have to say in the most respectful manner....Why! Why should she have to be witness to his decline and why should she have to mustard up the wall to not be hurt when she does go and see him?
He doesn't want us to remember him as a drooling nothing!
Mrytle you wrote - "Like your daughter, when my sisters and I were in our twenties and thirties, our father had Alzheimer’s. It was devastating for us to see how the disease destroyed his relationships with us. But if we had allowed our grief to dictate our participation in our father’s life, he would have had only one visitor – our mother."
But if he doesn't know you are there then why not look after yourself and not have some of your memories of your father "devastating". If he doesn't know any more and it is really harmful to the person seeing them become this way then why must they do it. If you were going to support your mom then that's a different story.
I think we have to look at where our line in the sand is...for each person it is different. I don't want my daughter to be upset, hurt and sad as her last memories of her father so for me it is OK for her not to visit if it is causing her this much pain.
Amber, you and your daughter need to do what's right for each of you. I know how devastated I was the first time my husband didn't know I was his wife (you're my friend) and didn't know my name, so I do understand how your daughter might have felt when visiting her dad. But once I came to terms with the initial shock and hurt, I chose to be in his life because I love who he/we were, the love we shared.
Don't be mad, but I have to ask why is your daughter visiting her father? You state in your post that "you were annoyed that she doesn't visit her father very often." So it sounds like she went to please and support you and since she doesn't visit often probably did not know his current state. I ask because motivation can make a difference in how we perceive and internalize events. I have no doubt the visit was devastating to her and I believe she was not prepared for the possibilities and emotions the visit could bring.
So it sounds like you initiated the reason for the visit which didn't go well. If you are okay with her not visiting her father anymore then fine. But very few of us after a family member or close friend dies doesn't wish we had spent more time with them, no matter how difficult. She's an adult, it's her decision and she will live with whatever she decides.
I have often admonished myself not to post when I am emotionally affected but I don't always listen to myself either.
Amber, your post put into words something I have been unable to do.
"He doesn't want us to remember him as... (and I filled in my own blanks).
This! My husband did not "go gentle into that good night". He was too debilitated to "rage against the dying of the light"; at least outwardly. But, he was angry. He had a lot to be angry about. It has taken me a long time to emotionally sift his anger toward me from that. Cognitively I knew but my emotional wounds were too fresh.
So, there were complaints from family members that I was too protective of him. Did I shield him? Yes. I know how he wanted to be remembered and how he would have hated to be remembered.
Even years before the dementia showed itself, to say nothing of years before dx my husband executed an advance directives document that was a "fill in the blank". So, there in his own handwriting was what he wanted- from illness and incapacitation to death to disposal of his body.
That I agreed with his wishes and decisions was just a bonus in the context of things. Yes, his wishes were honored. He deserved that dignity at least.
LFL - no I'm never angry when there is a good discussion going on....which I think this is. Always good to get others thought on a topic.
My daughter works 5 days a week with 2 young kids and house and lives far away so only a few visits a year. I didn't think how seeing him would affect her because she is a pretty strong person....my bad. But from now on when/if she goes again I'll make sure I've given her a heads up what to expect.
abby - Yes I agree with shielding him....some of my neighbours said we are going into town and will pick him up and take him out for coffee or lunch....I know that they have no experience being with someone with dementia and wouldn't understand why he does what he does so I said instead of taking him out they have a lovely area to sit in the home to have coffee. Then I went to the nurse and said that I didn't want just anybody taking him out, only if I have given prior approval. Also I don't want this kids to show up and visit him....they haven't bother to keep in touch and its been decades so bugger off. He wouldn't remember who they are either.
Good question – if my father didn’t know we were there then why not look after ourselves and not be left with devastating memories of him? Maybe it’s because that was in the 1980s and there was not as much understanding of Alzheimer’s or help for the families. My sisters and I did not made a conscious decision to get so involved. Since my father was at home until a few months before he died, we were always over there checking in. But two of us lived close by and we did not have our own families then.
If we had lived far away and had been busy with our own children, as your daughter is, we would not have seen our father as much and would probably have been caught off-guard by his not recognizing us.
You’re right. Your daughter should do what is comfortable for her, especially if her father does not know she is there.
I did think one thing was kind of touching, though – that your husband called your granddaughter by your daughter’s name. It shows he has not forgotten your daughter yet. He just remembers her as child.
I would go see my grandmother long after she didn't know who I was. Why - because I knew I went. I loved her dearly because she was the only grandparent I ever had. She was not what you would call an active part of my live - we would drive to her place once a month for a few hours. I would get her talking about her garden, quilting, and later she talked in the past. I like to say she had senile dementia because she never got like AD people. She died at 94.
My mom had dementia and medical problems all brought on I believe by depression and malnutrition. We never had a good relationship. I lived an 7+ hour drive from her. Every 3 months we would load up the kids and drive there for the weekend. Why - because even if it didn't mean much to her I knew I did it. It was a way to honor her. When she was in the nursing home, not knowing who I was, couldn't talk, confined to wheelchair, later could not feed herself - I would visit. As with my grandmother she did not know who I was but I visited because it was the right thing to do for me. I knew I did. One of my brothers - her favorite that she would do anything for - would visit her once a year. He called it his 'yearly duty'.
There is a story out about a man who visited his wife who had Alzheimer's and didn't know who he was every day. Someone asked him why he would visit when she didn't know he was there. His answer was something like 'because I knew I was there'.
Charlotte, that's the notebook (tear jerker) and the nurse asks the husband "Why do you visit everyday when she doesn't remember you?" His response "Because I sill remember her." Which pretty much sums up why we continue to visit loved ones.
Myrtle, you're right...he just remembers her as a child. To me that is a lovely thought.
Last week one of our granddaughters came home after a 2 year stint in the Peace Corps.Day after she got hime we went to NH to see Pappy. I was worried how she would react to the very drastic change in him. She handled it beautifully.Sat and talked to him about her time in Africa and grueling trip home. I had told him before hand that she was home,I don't know if he really knew which GD it was but he never took his eyes off her and would grin and point his finger at her and give the biggest smile.She felt it was worth every minute of the visit.Maybe he thought it was oour daughter ,he never reacts when she visits,just sits and stares at her.I know it hurts her but she won't give up visiting. But as others said,everyone has to do what they think is best for them.
On the subject of young children . . . When I went see my husband on Sunday, the place was crowded with Father's Day visitors. (He is in a LTC medical facility for veterans, so most of the residents are men.) When we passed through the lobby on the way out, there was a young family with a very young baby in a carriage. The older man who they were visiting was sitting next to the carriage and could not take his eyes off the child. Of course, we stopped for a moment and admired the child, too. When we returned about an hour later, the family was still there and the baby was in the mothers arms, with the older man sitting next to them, smiling.
I think young children captivate and inspire many of us.