My wife, Clare, is dying. Slowly, but surely, Alzheimer's disease is taking Clare from me. Living in a lockdown dementia unit of an assisted living residential facility since September, 2013, Clare is courageously trying to enjoy her remaining years as much as possible. She no longer recognizes our children and grandchildren. Clare still recognizes me, but sometimes forgets that I am her husband. I visit Clare every day, but I know that the time is coming when she will no longer know who I am. I continue to love Clare as she is but, at the same time, I miss Clare as she used to be. And I miss the future we had hoped to have together that now will never be.
Alzheimer's caregivers go through a roller coaster of emotions as we care for our loved ones and grieve for their loss at the same time. Anger, anxiety, depression, frustration, grief, loneliness, regret, sadness... these are just some of the many emotions I may experience on any given day. My emotions are never far from the surface and it takes very little to push me to tears about what has already happened to our marriage, or what lies ahead for Clare and me in the near future. I love Clare so deeply and miss her so much that listening to a song on the radio or watching a TV show can trigger unexpected tears.
Although still married, in a very real sense I am already widowed. I know that I must get on with my new life without Clare. However, I want to maintain our connection as long as possible, even if that means placing my "new life" on hold in some ways. Although we still hug and kiss each other during each daily visit, Clare is now more like a loving child than my wife. She rarely speaks much anymore, preferring to spend her daily time with me cuddled up in my arms, asleep.
Alzheimer's caregivers all deal with somewhat different issues because, as I was told on my first day in my spouse caregiver support group, "If you know one person with Alzheimer's, then you know one person with Alzheimer's." All caregivers deal with loved ones with Alzheimer's, but our loved ones do not all present the same symptoms and our greatest daily stressors are different for each of us. For some it is behavioral issues. For some it is being asked the same question over and over. For some it is the inability of our loved one to carry out the simplest one-step direction. For some it is the complications arising from non-Alzheimer's issues such as heart disease, diabetes or Parkinson's. For some caregivers, the greatest stressor is the financial side of Alzheimer's... worries about how to pay for home health aides, companions, day care programs, assisted living or nursing home placements and wondering how their draining bank account will leave enough money to maintain their current life style after this Alzheimer's journey ends.
Life as an Alzheimer's spouse is a difficult emotional ride.
This is the first in a series of ten postings that will share emotions that I find myself dealing with regularly. It is my hope that these articles will bring some comfort to other Alzheimer's caregivers. In my support group, participants always seemed to find comfort when learning that others were experiencing similar feelings. My next posting will be, "Reflections of an Alzheimer's Spouse ... Acceptance."
Readers of this blog are invited to learn more about my journey with Alzheimer's, and read copies of more than 40 of my articles previously published in medical journals, caregiver magazines, and newspapers, at www.allansvann.blogspot.com. You can also email me directly with comments or questions at firstname.lastname@example.org