By: Karen Plate
Photo above: My sister Annie on the left, my Mom and Dad and myself on the right
When my mom first started showing early signs of dementia with macular degeneration, she was finding it difficult to do such things as going to the grocery store or preparing a meal. Life was becoming a constant battle of misplacing or losing things. It was around that time that mom and dad moved out of their home of 30-some years.
As a couple, they made the decision to move into an assisted living facility. My dad was always “one step ahead of the game.” He wanted to be sure he and my mom had the care they needed without being a burden to their family. Moving from their beautiful home was very difficult for my mom. Nowhere else seemed like home to her.
They made the decision to take meals in the dining room, instead of having Mom do any cooking. Daddy loved going to the dining room. It gave him time to have conversations with others. He was the type to meet and greet other residents.
For mom, it was a different story. She was not as social as my dad. Because of her macular degeneration, she could not see very well. All of the people with white hair, “white heads” as she would call them, started to look the same. She would often say to daddy, “How do you remember everyone’s name when they all look the same?”
My mom started to resist going to the dining room, especially breakfast. While in their home her routine had been having her coffee, toast and her quiet time in her robe. Suddenly, having to be dressed by 8 a.m. and out the door for breakfast with all of these “strangers” at the breakfast table was just too much!
My siblings and I did not live in our hometown of Butte, Montana so we were not available to help out in any way of caring for my mom. This changed when she was admitted to the hospital with pneumonia. In order for her to return to her present living situation, she would require 24-hour care. Neither the assisted living facility nor my dad could provide this, so my sister and I set up a schedule of staying with her two weeks at a time. We could not imagine her going to a skilled nursing facility in her state.
My mom’s dementia progressed and it was given the name Alzheimer’s. I saw this horrific disease steal my beautiful mom from me. I wrote these poems to help express my profound sadness during this season of life with my mom.
I love you Mom.
“A bushel and a peck and a hug around the neck.”
The Long Journey
You are on a journey.
One that is taking you,
To where you do not necessarily want to go.
It is agonizing for us, who love you,
To see you leave.
You still have many miles to go.
They may be hard miles to endure.
Storms of confusion, weakness and sadness are near.
I pray the hills will be few.
You are staying the course well.
This is a great challenge.
Why you for this journey?
I don’t know.
I miss you so.
I pray you will reach your destination,
Soon.
Alzheimer’s the Thief
I hate you.
You have robbed me of my mother.
You have robbed a husband of his wife.
No one can stop you.
You never give back.
You have robbed my mother of her whole person.
She doesn’t even know who she is.
What a violation.
I hate you.
It’s a Great Life
“Karen, she didn’t know who she was today.”
“What do you mean, Daddy?”
“When I was in the bathroom she opened the door and said, ‘Who is your wife?’
You are, Kathryn, you are my wife.”
“Did that make you sad Daddy?”
“Sure it did.
It’s a great life, Karen.
It’s just sad that it has to be like this.”
thank you for this poem and your sharing. my 90 year old mother has macular degeneration and now is in the later stages of alzheimer’s. I am also a psychotherapist and one way I am coping with the pain of my frozen grief is to reach out to other women who have walked or are walking a similar path. My hope is to think about and possibly write about the particular facets of grief when your parent no longer knows who you are, when she no longer can be your mother but is still with us.
Thank you Sue for your reply. Frozen grief is such a good description of the grief that comes from watching a loved one change from the effects of Alzheimers. With the poems I wrote I was able to express what I was feeling. I found my grief and sadness was so deep it was almost like I was “frozen”. I am so sorry for the “slow goodby” you are experiencing with your dear mother. Reach out to me anytime.
With care,
Karen
My mom is 104 and is in Assisted Living in Ohio, 2200 miles from me. She also has macular degeneration and early onset Lewy Body Dementia. It is sad to see her where she knows that she forgets things and says “I am loosing my mind”.
Hi Mary Ann, I am so sorry that you are going through the “long goodby” with your Mom. I too lived far from my Mom, so I know the difficulty that distance creates. How very scary for the victim’s of dementia, no matter what form, when they know they are forgetting and have the feeling that your mom has expressed of “loosing her mind”. My Mom suffered from severe anxiety as she never knew where she was or who she was with.
The thought came in early January of 2004 that maybe Mom should be moved to another facility, as it was getting increasingly difficult to care for her. I wrote this poem at that time.
For you to live
In another facility
An Alzheimer unit,
A nursing home,
For someone else
To care for you
Some one who does not love you
Or cry for you.
This is hard for me to fathom.
A suffocating sadness
And anger falls on me.
I feel loneliness for you.
I feel fear and feelings of abandonment.
I would look into your eyes and see more confusion.
I could imagine you thinking
“Why am I here
Do you not love me?”
1/8/04
Reach out any time Mary Ann. You and your Mom are in my thoughts and prayers.
With care,
Karen
Thank you so much for sharing this, Karen. I love that you are expressing yourself through poetry. Thought that you might like to know that we got my mom some kittens during her early days with Alzheimer’s. She forgets their names now, but she had named them ‘Bushel’ and ‘Peck’ after that very song you shared above!
Hi Janet. Thank you so much for your reply. Naming the kittens ‘Bushel’ and ‘Peck’ made me smile. 🙂
With care,
Karen