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 More like a child 
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Post More like a child
Last night I was playing a video game with my twelve-year-old son Chris. Halfway through, he turned to me and said, “Dad, are you, like, becoming a kid again?” I thought he was talking about my amazing skill at Xbox baseball. I said, “It feels like it, buddy. Who knew I was this good?”

“That’s not what I mean,” he said.

I paused the game and looked at him. “What do you mean?”

He looked down at his feet. “Well, how come you always have to ask Mom’s permission to do things? We used to be able to go to the park to play basketball whenever you wanted. Now you have to ask her. How come?”

I hadn’t realized how things must seem to him. I also hadn’t realized how subtly things have changed since my diagnosis of early onset dementia. Used to be, I’d grab up my keys and say to my wife, “Honey, Chris and I are going to go shoot some hoops.” Now I usually say, “Honey, do you mind if I drive to the park?” I do that because Tamara is usually much more aware of my condition than I am. She knows if I am confused, or if I am going to become confused. She knows that, though I may feel perfectly fine right now, if I exert myself too much, I might fall down or worse. She knows that my mental function can change fairly quickly. She’s afraid for me to be out without her, yet she doesn’t always want to go where I do. We used to argue about it. But I’ve quit arguing. I just accept her judgment because I do realize that my own judgment might be impaired.

In my son’s eyes, that makes me like a kid. But it turns out, that was only part of what he was thinking. Not only does my condition make me more like a kid, it makes me less of a man, to him. I’m less sure of myself. I’m less decisive. When the clerk at McDonald’s asks me if I want fries with that, I look at my wife. When a waitress asks me what kind of salad dressing I want, I sometimes get confused and start stammering until my wife says, “He’ll have ranch.” Don’t ask me what kind of oil my car uses.

My son has personally seen me stare down a board of directors and say, “No, that’s not the way we’re going to go. We’re going to do it this way.” Now I can’t choose between chocolate or vanilla. I shrug. I don’t know. I don’t care. I just want ice cream. That’s not like me.

This disease is dis-empowering, for women as well as for men. But in my son’s eyes, it is emasculating. He’s always looked up to me as the MAN. Daddy is solid. Daddy is strong. Daddy makes me feel safe.

My children are being robbed of their father. That’s why I so desperately want to hang on. I don’t want my son to pity me. I want him to look up to me and to know that I am and always will be his Daddy.

Randy Graves

Thu Mar 22, 2007 10:59 pm
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Post Re: More like a child

My children are being robbed of their father. That’s why I so desperately want to hang on. I don’t want my son to pity me. I want him to look up to me and to know that I am and always will be his Daddy.

Randy Graves[/quote]

Hi Randy,
What comes to mind here, when my Husband was declining and the children were asking questions my daughter purchased a book online I can't say for sure what the name was but I will ask her but I know it helped the children understand what was happening to the man that loved so dearly, if interested I will ask her for you, I don't think your son will pity you at all.
I have a 15 yr old son( He was 13 at the time) that lived in the home most of his life with a Dad that had LBD and I can honestly say that I don't think he ever pitied his Dad and after his Dad passed I was of course worried about this young boy losing his Dad at such an important time in his life and the Hospice SW told me the very best thing I did for my Son was include in the happenings with his Dad's illness most parents think they are protecting the children by not telling all, I didn't do that at all...........

Fri Mar 23, 2007 8:59 am

Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
Hi Randy:
Your post has given me food for thought. Even though we are now in the 21st century, there is still a pervading idea in our Society that by definition men are supposed to be "strong", "decisive" "independent" and a host of other adjectives. Anything less is considered "less of a man". In my opinion this whole idea is hogwash and will continue to be perpetuated unless we all begin to think differently. Here is an amazing opportunity for you and your wife to teach your son that men and women are equal in all things, and that marriage is a 50-50 partnership. He can learn that his mother is a strong, capable, compassionate being who when called upon can shoulder the load. He can learn that you are at times vulnerable and frightened and that is perfectly okay for a man to feel that way. He can learn compassion and acceptance and the ability to express his thoughts and feelings without being "less of a man". In fact he will be MORE.
My husband was a tough, hard-drinking, hard-assed factory worker. He never met an argument he couldn't participate in and he never met a child or a pet that he didn't instantly want to love and nurture. He protected me and the kids and provided us with everything we needed. Then 3 years ago he developed a bone marrow failure disease. We almost lost him then, but he has struggled to stay alive since. My tough, well-muscled warrior is now weak and walks with a cane. But you know what? He is "more of a man" than he ever was. His courage and strength of will demonstrates how tough he really is. His acceptance with grace of the terrible fate that has befallen him shows a strength of character he didn't know he possessed. It's been my privilege in the last three years to shoulder a lot of the load he formerly carried and I wouldn't have it any other way.
My point is, every challenge we face in life is an opportunity to learn and perhaps to teach. I hope you and your son can embrace this idea and in doing so forge an even stronger bond than you already have.
God Bless

"Im pedalling as fast as I can!"

Fri Mar 23, 2007 9:47 am

Joined: Mon Jun 05, 2006 3:29 pm
Posts: 93
Location: State College, PA

You have an opportunity to teach your son that there are many ways to measure a man. Some measure by money. Others by power. Some by status. Those yardsticks leave even 'successful' men unsatisfied and seeking more. To me, the measure of a man is not WHAT he can do. It is how much he can love.

I stress to my daughters that no matter what their grandfather can or cannot do, he will always love them and know they are someone very special to him. And THAT is what matters most.

We don't care if he can program the VCR or even if he can butter his own toast. He's their papa and that's enough.

In hope,

Fri Mar 23, 2007 10:57 am

Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Thank you all for helping. Actually, I did have a conversation about what makes a man with my son. I've had that conversation several times with him since we adopted him and his three sisters three years ago. His previous role models were abusers and drug addicts who had been in and out of prison. I am teaching my son that the measure of a man or a woman is his or her capacity to be nurturing, compassionate and courageous enough to stand by principles. I don't buy in to gender roles and I don't teach them to my children.

For me, and really for my son Chris, the issue is the loss of power and independence. For Chris, it is the loss of having a Daddy that can help him to feel secure. He had found in me a sort of castle. I was solid. I was dependable. I was safe. I still want to be that castle for him, but sometimes it feels like the walls are starting to crumble.


Fri Mar 23, 2007 12:53 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Randy --
Again, I have to thank you for sharing the story of your journey. I have started reading your posts to my husband Jerome and he is both amazed and grateful to know someone else is experiencing the episodes and feelings that he himself has. For example, your sharing about your relationship with your son, feeling "emasculated," learning to trust my judgment more than his own in some matters, feeling muddled one day and clear the next, right down to the salad dressing ... your experiences are helping Jerome feel "normal" (at least normally demented!) and relieved. He is even thinking about starting to participate on the forum himself. I know you've mentioned that you've been involved in pastoral care. Guess what ... you still ARE ... in a way I'm sure you never imagined. Thank you.

BTW -- saw this news item today. Not sure what magazine it is referring to. Maybe someone else knows ...

"Living With Alzheimer's Before a Window Closes: Mary Blake Carver gazes from the cover of a neurology magazine this month, under the headline "I'm Still Here!" She often feels like shouting the message to her friends, her children, her husband. Ms. Carver, 55, is among the growing ranks of people in the early stages of Alzheimer's disease, when short-term memory is patchy, organizational skills fail, attention wanders and initiative comes and goes. But there is still a eindow of opportunity -- maybe one year, maybe five -- to reason, communicate and go about her life with a bit of help from those around her. Yet Ms. Carver is often lonely and bored. Her husband leaves her out of many dinner table conversations, both say, because she cannot keep up with the normal patter. He insists on buttoning her coat when she fumbles at the task. She
was fired as a massage therapist because she lost track of time. So Ms. Carver fills her days by walking her neighborhood on the Upper West Side of Manhattan, always with her dog, so she looks like "an ordinary person," she said, not someone with "nothing better to do." Five million people in the United States have Alzheimer's disease, according to a study last week by the Alzheimer's Association. About half, 2.5 million, are at the early stages of the disease, other studies have found, struggling to pass for normal.They are impaired but not helpless or demented, and now a growing number are speaking out about how it
feels to be them: Silenced prematurely or excluded from decision making. Bristling at well-meaning loved ones who boss them around. Seeking meaningful activities to fill their days. Out of their individual frustrations, these patients are creating a grass-roots movement to improve services and change public perceptions. And they are making a mark."

Renata (and Jerome-in-Heaven)

Thu Mar 29, 2007 3:08 pm
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