December 31st, 2010 at 3:11 am
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A Personal Reflection: When a Loved One has Dementia

by Kathryn Kilpatrick, M.A. CCC/SLP

Sometimes, when I reflect back on the years when my mom’s hearing and then memory was failing, I still wonder what I might have done differently. We had a long distance relationship but even before any of these concerns were apparent, we had a special connection.

Often it was a challenge, because of the miles between us, to provide the day-to-day support. She was not into technology so we were relying primarily on phone conversations which was not easy with her hearing loss. With the short term memory problems, even the long letters I would send did not fit the situation very well.

For a while she had a fax machine in her apartment so I could send her notes that were more up-to-date. Later she was able to receive them at her assisted living but eventually I needed to make them less detailed. Eventually the messages on her answering machine were harder for her to hear and understand. So I tried other ways including sending frequent postcards with fewer updates so she had something to refer to when I called her. It helped her to keep the conversation going.

She tolerated and sometimes appreciated my attempts to assist her during my visits. I tried to revise daily tasks so they were more at her current level of functioning along with new strategies to assist with recall. Once it was a list of things she might need at the store that she could refer to. Another instance was when her address book was falling apart and I saw so many names crossed out. I offered to recopy it to help her and I was surprised how it took me for a walk down memory lane. When I was visiting months later I noticed she still was using her old one. She preferred it to the newly re-organized version, probably for the same reason. I wonder what memories went through her mind as she reflected back on the people she knew throught the decades of her life.

In the last year of her life after a fall, a broken hip then a drug overdose, the changes were more obvious. The light seemed to go out of her will to do this anymore. She never wanted to go into a nursing home and even made frequent references to the residents in the memory care unit. She really did not want to have to move to another level of care. These became emotionally intense times, particularly not living close to her.

My brother’s wife was the one I talked to the most, especially during these times. When her mother was diagnosed with Alzheimer’s disease, we had hours of conversation sharing feelings along with information that would be helpful to both of us. I hope you find someone with whom you can share your innermost feelings when you walk the journey with your loved one.

Very recently my sister-in-law’s mother passed away and I remember the times the two of us shared with our mothers such as playing a game of Scrabble when both of them were struggling to spell or keep score. It did not matter. I smile whenever I have these flashbacks because I was there and I needed that for my mom but just as much for myself.

My advice to those walking this journey of personal growth with a loved one is to focus on your relationship with that person. Let others have the relationship they chose to have. When you reflect back on those times, it will be the memories you had that will be the bigger part of what you remember. It was not an easy journey, but it was life changing in ways I never expected and I am grateful. I want to share the words to a song I heard a few weeks after my mom’s death. To this day it is one that resonates with me on so many levels.

How could anyone ever tell you
You were anything less than beautiful
How could anyone ever tell you
You were less than whole
How could anyone fail to notice
That your loving is a miracle
How deeply you’re connected to my Soul…

From “How Could Anyone” Music & Lyrics: Libby Roderick

Posted in Alzheimer’s, Death, Dementia, Support | No Comments »

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