Mourning the person who is here, but no longer the same

Having worked in the long-term care arena since 2007, I have had the opportunity to interact with many elders and their family members. I’ve had a front-row seat to see what the aging journey looks like for those who live in our assisted living or long-term care settings. Quality of life has always been my priority and I’ve worked hard to ensure that we bring the best of education to our teams to create both the right environment and the right approach to care.

Dementia all too often goes hand in hand with aging. Certainly, not everyone experiences this and the degrees of cognitive impairment are as unique as each individual, sometimes shifting within the course of a day or days. It is, I think, as challenging — or more challenging — for families than it is for the elders themselves. So often a family member will say “I wish you could see her the way she was 10 years ago,” really mourning the person who is still there but no longer the same, the person they have known and loved.

True to my education, I have said a lot of things like “We have to meet people where they are” as well as “They are doing the best they can.” When someone tells me that their parent or grandparent no longer seems to know them I have said, so very many times, that they may not remember your name but they still know you, they still know you are someone they love.

While I have always sympathized with this sense of loss of connection, I did not fully understand it until now. My parents died when my brother and I were young and neither of them had lived long enough to decline in this way. Family members who lived to an older age, even with some cognitive impairment, still never seemed to lose that knowledge of connection.

Yet now I face that feeling head-on and I understand, at a deep gut level, just what the feeling is, how having someone you love not remember you shakes you to your core, making you feel not just forgotten but with such a sense of profound loss.

My mother-in-law, who is approaching 99, has always prided herself on maintaining her mind and her memory. When we’d take her in the car she would try and memorize license plate numbers just to keep her brain engaged. Once, not that many years ago, I had to help her with a credit card payment over the phone. When the representative asked her to confirm the last four digits of her checking account she rattled off the routing number of the bank and the full account number, completely from memory.

But time, amplified by the isolation that the pandemic has wrought, has changed things for her. A woman who spent 20+ years telling everyone that I was “the daughter she never had” now looks at me without recognition. Even when I tell her my name, while she is lovely and polite, I can see that the recognition is just not there. Her vision has, for the most part, been stolen by glaucoma but she has prided herself on knowing voices. She knows the people around her in assisted living, she knows my husband when she hears his voice but, somehow, I have slipped from that memory.

On an intellectual level, of course, I understand it. I understand that this is not something she can help and not something deliberate. I know, as my dearest friend would say, that if she knew it, she would be mortified. But emotionally it has jarred me. Having been without parents for far too long, she was the person who played that role for me. She did it with love and grace and acceptance and made me truly feel like her daughter almost from the first day we met. I know that I am, and will, grieve that loss. And I know I do, and will, understand far more fully the pain that families feel as they experience these heartbreaking changes.

Carol Silver Elliott is President and CEO of The Jewish Home Family, which runs NJ’s Jewish Home at Rockleigh, Jewish Home Assisted Living, Jewish Home Foundation and Jewish Home at Home. She joined The Jewish Home Family in 2014. Previously, she served as President and CEO of Cedar Village Retirement Community in Cincinnati, Ohio. She is chair-elect of LeadingAge and past chair of the Association of Jewish Aging Services.

Source Link: https://blogs.timesofisrael.com/my-own-lesson/

Recommended For You