By Barbara Trainin Blank
My mother passed away more than two years ago, but I still think of her every day and often miss her intensely. There are times, though less frequent than previously, when I pick up the phone to call her as I did every Friday when she was well and twice a day when she was not.
The passage of time has given me the distance to think about what I might have done differently to make my Mom's final days more fulfilling for her and easier for me. The actions and attitudes I didn’t have the presence of mind nor time to consider while care-giving.
Hindsight is 20-20, as they say, but if I had to do it all over again, I would have given my brother specific tasks so he would have become (one can only hope) more involved in our mother's care. I would have tried to be more understanding of the aides, particularly the one I didn't like. They did come from a different cultural background than myself. Losing my temper wasn’t constructive.
At the same time, I would have tried, whether through charm or toughness or both, to get the caregivers to do what I wanted and what my mother needed. They were not neglectful. But at times they watched over her passively, not allowing her to come to harm but little more.
I would have encouraged my mother to participate in social and other programs outside the house. Though between the withdrawal and depression, which often accompany patients with dementia, that would have been hard to do. I would have tried to persuade her to take art therapy, using the talents she had but had given up.
I would have asked for help from friends and family members when I couldn’t go to New York. My kids lived with my mother at one point or another during her illness, but were unable to oversee her care in the way that was needed. They were too young.
Above all, having learned since then about innovative and accepting ways of working with dementia patients, I would have been more patient with my mother, accepting her where she was, e.g., watching silly TV programs, rather than where I wanted her to be. I would have argued less with her irrational statements and taken things as they came.
For all that late-found awareness, I know that no one in my situation could emerge unscathed without feelings of guilt, sadness, and inadequacy. Dementia justifiably frightens people more than cancer. Ultimately, though, one has to forgive oneself. We all do the best we can, without the advantage of hindsight but with a lot of love and good intentions.