Editor’s note: The Learning to Live column is written monthly by a community member involved in the collaborative partnership formed to encourage meaningful conversations about loss, grief, growth and transformation.
What is loss? Loss is many things to many people. By definition, it is the fact or process of losing something or someone. There are many types of loss. The loss I am learning to live with is the slow process of losing a loved one to Alzheimer’s disease.
I have been a social worker for 30 years and have seen, felt and experienced much loss. My 11 years with hospice showed me a lot about loss, death and dying, as well as learning to live life without a loved one. My mental health days taught me how mental illness can be a debilitating loss. Working in a nursing home, I dealt with relentless illness and death. I have had personal experiences with death and other types of losses. But none of that has prepared me for what I am living with as I watch my mother suffer from Alzheimer’s.
While we knew she was getting more forgetful over the years since her husband died in 2010, we could laugh about it as well as get annoyed with it. With her, Alzheimer’s initially manifested as depression, which was treated with a hospital stay and medication. With that came the loss of her driver’s license and the diagnosis.
A few months later, she had a “psychotic episode” that resulted in another hospital stay and a change in medication and the loss of her independence. She now needed to have caregivers approximately 18 hours a day or more. The latest loss came in November. She was quickly running out of money with the cost of private caregivers yet still needed care. The solution for her was to enter an assisted living facility and leave the home she loved.
Alzheimer’s has created so many losses for her in such a short period of time. I hope she doesn’t remember the hurt, the pain, the losses.
I am fortunate that she knows me, her grandchildren and others close to her. Yet, I have lost the mother I knew. I sit across from her and I think, “Who is this woman? I don’t know her.” I am now the “mother” and am no longer a daughter. I am a financial planner, a caregiver of sorts, a bill payer, an only child trying to keep it together. I hurt. I am sad. I am scared. Watching this process is heart wrenching. I feel guilty because I don’t want to live it, I don’t want to watch it. I don’t want to visit — not because I don’t want to see her — I don’t want to see what this disease continues to do to her.
It is so different dealing with this sort of loss professionally as opposed to personally. I am not patient at times. How can I be patient with the people I work with professionally who have this disease but not my own mother?
This experience has given me the insight that loss and deprivation come in many forms and I don’t want to diminish how others feel, what they are living and going through. We are all in this together.
Loss? It is a process of emotional upheaval, good and bad days, laughter and tears, pain and suffering, with the end result hopefully being to find your way out of the darkness to the light at the other end. Loving comes with the risk of losing something — and hopefully it will have been worth the risk.
Kimberly McGinnis is the director of resident services at The Village at Penn State and a member of Learning to Live: What’s Your Story?