My mother has Parkinson’s and her husband is presently going through treatment for prostate cancer. They are both 83. My mother has had surgery for DBS where a probe has been implanted in her brain which has greatly improved the quality of her life and practically erased her dyskinesia. However, she is still weak and feeble. She uses a walker and a wheelchair and needs her husband’s help to get out of bed, get dressed, bathe, and use the bathroom. Her balance is compromised and occasionally she “freezes” in the midst of an action and needs some physical pushing to get moving again.
My sister, brother, and I all live out of town and are trying to negotiate help with a variety of agencies. There are many groups that supply support for elders, some with a cost connected, some available at no cost if one qualifies for Medicaid. Services range from light housekeeping to help in getting someone dressed, from meals to transportation to and from doctor’s appointments. It is definitely difficult to negotiate this from a distance. But the largest challenge of all has not been the phone calls to the agencies (lots of messages and waiting for calls to be returned), but rather negotiating with my mother and her husband about their need for support.
How does one negotiate dignity? My mother is very proud. As she loses control of her body, how does she maintain her own sense of self-esteem? As a person who has always given and managed and dominated, she finds herself in a very different place, a place requiring the support of others around her. Her husband has been providing that help but now they need a larger circle of support. And my mother is reluctant and scared to reach out.
Her fears concern strangers in her house and the possibility that they will steal from her. Her fears are about the loss of dignity in making public her personal intimacies (like going to the bathroom, getting dressed). Her fears abound around the larger community knowing the extent of her disabilities. (My mother has always been a bit fragile around notions of community, has never fully embraced it beyond the edges of her own family.) She has dealt with her issues of self-respect and self-esteem when it is simply her husband managing much of her physical life. (He is also an awesome morale booster.) But as these needs surface into the public realm, her ability to emotionally accept the help she needs is a challenge for her.
My siblings and I have had innumerable conversations with her. Her husband actually has always been quite open to support from the outside community. It is my mother who is the most reticent. Over this last Thanksgiving holiday, when we were all together, we were finally able to push her into at least exploring possibilities. We arranged for a meeting with an elder agency which took place this last Wednesday. It has been clear to all of us all along that she and her husband need to be in control of all decisions to be made.
It turns out that the social worker who showed up at their house was the daughter of someone my mother had gone to school with. In fact, my mother thinks she may have dated her brother. This put them immediately at ease. The social worker spent over two hours with them, some of the time looking at photos and listening to stories of our family. (My mother and her husband are actually quite charming.) Somehow her fear of people in the larger community knowing of her status was put to rest by someone in the larger community knowing of her status. This irony was not lost on her or us.
My mother and her husband have decided to start with someone coming to their house four hours a week for light housekeeping. This is the first step toward opening up for even more support. We are committed to having them stay as independent as they can for as long as they can. Only by accepting help will they be able to do this. Only by all of us allowing them to make these decisions for themselves (with lots of our urging) for as long as possible will this work.
And, of course, this experience has begun to impact my own personal view down the road. It won’t be easy for myself either to negotiate my own dignity and open myself to the help of others when I need it. This is a poignant journey.