Dementia: A Social Death Sentence

wavebreakmedia/Shutterstock

COMMENTARY

On my most recent flight home (I know, I usually end up writing a new article every time I fly), I sat next to a middle-aged woman and her father who seems to be struggling with some kind of cognitive impairment, possibly dementia. I was very impressed with how, throughout our 2.5-hour long flight, that she was quite attentive to his every need and kept him both engaged and entertained. She did that through asking questions and sharing pictures saved on her phone that seemed to fill his soul with joy.

Very few of us pay attention to our parents when they grow older, especially those with dementia. We seem to either take them for granted or get easily frustrated with them. Some of us even abandon them and then we wish for a different outcome when they are no longer with us.

I lost my mom in 2016. She was diagnosed with dementia during the ugly civil war in my home country, Libya. I do strongly believe that her memory quickly deteriorated because of the many times her heart broke losing loved ones to that nonsense. I was lucky to spend the last week of her life with her; I was holding her hand when she passed. She might have not remembered who I was, but I know deep in my heart that she felt I was there. I would have never had it any other way.

My grandfather developed severe dementia before his death too. I remember him passing by my grandma’s room who died before him and him asking, “Where is the lady who used to be here?”

Maybe I am projecting my own fears about this ugly disease given that both my mom and her dad died of dementia-related complications. There is nothing I can do right now to change my genes or reduce my risk, but here are a few things I will do and encourage you to reflect on if one or both of your parent(s) is/are still alive:

1. Enjoy the current moment. Even if they do not have factual memories, create emotional memories for and with them, through moments of bonding, care, and tenderness.

2. Repair any damage in the relationship. Heal old wounds if there is room for healing. Forgive old ruptures if you can.

3. Focus on your spouse and children. Be emotionally available for them, so together you create long-lasting memories that they can cherish when they miss you.

4. Refuse the dysfunctional status quo. There is nothing normal about family breakdown.

5. Show respect, love, and compassion to the old people in your life and those around you. Not only your parents, but also your grandparents, uncles, aunts, older siblings and relatives, neighbors, and all seniors in your community. The global pandemic showed us how painful isolation is. The best cure for loneliness is to build bridges and be a source of safety and solace for others.

6. And finally, do not forget to take care of yourself. Caregiving can bring joy, but can also lead to burnout if your neglect your own needs and boundaries.

Dementia is a mental health condition that can make or break families. Remember that behind the difficult behavior is your loved one—a human who deserves to be found, held, comforted, and tended to with the utmost love and compassion.

Dr Reda is a practicing psychiatrist with Providence Healthcare System in Portland, Oregon. He is the author of The Wounded Healer: The Pain and Joy of Caregiving.