Posts Tagged ‘family communication’

A Change of Perspective

Saturday, August 27th, 2011

“My mother is thinking of sending me to a private school next year,” said my friend.  She was perfectly serious, but her eyes were smiling.  “Really?  Which one?”  I replied in the same serious tone.  We both broke into a grin, but another friend nearby looked at us like we were crazy.

You see, my friend is a woman in her forties and finished school years ago.  We smiled because the statement was ridiculous, but I smiled even more because I knew how far my friend had come and how much her perspective had changed since I first met her.

About 18 months ago, I received a phone call one cold, rainy Saturday morning from a woman in tears.  She told me her name and that a mutual friend had told her to contact me.  Her mother had Alzheimer’s disease, she told me.  Her mom still lived in her own home, but had sitters who came to the house every day.  The caller was distraught, grieving the ever-changing loss of the mother she loved so well.  We talked for a long time and I suggested several books she might read to help her.

In the time since, my friend’s mother has moved into an assisted living facility.  In her mother’s view of the world, it’s about 1975 and her mother is making the decisions that were important to the family at the time, private vs. public school for her daughter, for example.  That being said, her mother is “happy as a lark.”  Perhaps a bigger surprise is that my friend is happy, too.

My friend has learned the secret of living as a family with Alzheimer’s disease.  When the disease strikes, the first reaction is denial.  The second is an overwhelming need to fight the disease.  The problem with this second reaction is that as I fight the disease, I often end up fighting my loved one who has the disease.  I think if I work hard enough, fight long enough, I can bring back the person I love.  I argue with her bizarre statements, correct her at every turn.  I end up making myself and my loved one miserable.

So what’s the secret?  Stop fighting the person.  Love her as she is in her ever-changing now.  Whatever bizarre statement she makes, follow her line of conversation.  When my friend’s mother said, “I’m thinking of sending you to a private school next year,” my friend’s reaction, quite wisely, was, “What school do you think I should go to?  Do you think I’ll have any friends there?”  She joined her mother in her mother’s world and both were at peace, even in the midst of Alzheimer’s.

Talking to Kids About Alzheimer’s and Dementia

Wednesday, August 3rd, 2011

I have mentioned before that I had a grandfather and grandmother with Alzheimer’s disease on opposite sides of the family. My grandfather got Alzheimer’s disease when I was about 4 years old, but no one knew what to call it at the time. Was it reversible? No one could tell us. When I was in about the 4th grade, my parents and my grandmother finally decided to take him to Atlanta (a 6 hour drive) to a specialist. Diagnosis: Alzheimer’s disease, irreversible, no treatment available. I don’t remember exactly what my parents told me, but they were honest. They involved me in conversations and didn’t try to shield me from what was happening, at least in so much as I could understand at my age.

Our own daughters were 4 and newborn when my father-in-law began showing signs of Alzheimer’s disease, although it was another 2 years or so before we got the diagnosis. When our older daughter was about 6, she began to ask questions about things, which I “tip-toed” around in answering. Finally, she said one night as I was putting her to bed, “What’s the matter with Papa?”

What do you tell a child? Obviously, you have to consider the age of the child, but as much as is age appropriate, be honest. With a 4 year old, you might say, “Papa has trouble remembering things, because he has something wrong with his brain. You can’t catch it like you can a cold, so you don’t need to be scared of him. Just remember that he will always be Papa and that we will always love him.” As children grow older, add detail to that conversation. Children will ask questions, sometimes questions for which we adults don’t have the answers. Whatever you answer, and even if you can’t answer, be honest about what is happening. That will help prepare the children for the future.

Children often have an easier time dealing with people with dementia than adults. Involve your children in the care of your loved one with dementia. Let them do art or music together. We found art and music to be the bond that was never broken, no matter what Alzheimer’s disease did to my father-in-law’s brain, he could still sing the hymns of his childhood. Those times are a treasure to us now. Additionally, our younger daughter knows her grandfather through his art. You don’t have to be an art therapist to do arts and crafts projects with your loved one with dementia.

When our younger daughter was about 3, she spent the night with my in-laws. After I picked her up the next morning, just the two of us were in the car on the way home. She said, “Mama, sometimes I get scared that Papa is old and sick and that he is going to die soon.” As a parent — and one who had two grandparents stolen by Alzheimer’s disease — I was at a loss as to what I should tell her. Then, it came to me, “Papa loves God and God loves Papa, so no matter if Papa lives a long time or if he dies soon, he belongs to God and God will take care of him.” She was completely satisfied. Simple truths are usually best.