A few weeks ago I attended a community talk by Jean Jordan, Ph.D, sponsored by our local Alzheimer's Association chapter. Jean is director of Senior Connections, a group that I've spoken to in the past about ethical wills and personal legacy letters. She is a wise woman who I appreciate and respect -- so when Jean speaks, I listen!
In her talk entitled "When Love is Not Enough", Jean spoke about her own experience with her mother's Alzheimer's disease. Her mother had the disease for the last 19 years of her life -- an impossibly long time for a disease which can progress slowly or very quickly. It is a dynamic disease that challenges most all aspects of a person's life and their family system, especially the primary caregiver, according to Jean.
Today, even though most people I know seldom consider the prospect of getting the disease, Alzheimer's is a growing problem the longer people live. In Oregon today, over 80,000 people are affected by the disease and experts expect that number to grow to over 154,000 in the next 20 years. Nationwide, one quarter of people over seventy-five will be stricken and the number rises to over 50% of people over eighty-five years of age.
Jean reminded us that "all planning is fiction", especially with a disease that can change from day-to-day. Many people make the promise to their parents or spouses to "never, never put you in a nursing home". But none of us can say "I made a promise that included Alzheimer's" and all of the enormous challenges of caring for someone with the disease.
Over 75% of Alzheimer's care takes place in the home today, done by family caregivers with support of professional caregivers (if the family can afford it!). And, most unfortunate for everyone involved, Medicare does not finance long-term care in the home where constant care and vigilance with an Alzheimer's patient can last for years.
Sometimes "love can get us in trouble" according to Jean, especially when we wait too long and the person we love becomes unsafe living at home alone, unsafe when driving, or abusive to their spouses and others. She noted that "taking abuse is never, ever an act of love." Often, "tough love" is the best approach -- one in which you "love the person so much that you'll make the hard decisions" they cannot rationally make for themselves anymore.
Primary caregivers and other family members need to adapt to the changing person with Alzheimer's. Jean noted that "correcting" a person with the disease is not a loving response, nor is neglecting one's own self care. She says "self-care can be the most loving thing you can do for the person you care for". Too often (over 60% of the time when a caregiver has her or his own health issues), the caregiver dies before their loved one with the disease!
In her book "Learning to Speak Alzheimer's", Joanne Koenig Coste outlines five tenets for any person caring for a person with Alzheimer's and other dementia's at home:
"1. Make the Physical Environment Work. Simplify the environment. Accommodate perceptual loss by eliminating distractions.
2. Know That Communication Remains Possible. Remember that the emotion behind failing words is far more important than the words themselves and needs to be validated. Although many losses occur with this disease, assume that the patient can still register feelings that matter.
3. Focus Only on Remaining Skills. Value what abilities remain. Help the patient compensate for any lost abilities without bringing them to his or her attention.
4. Live in the Patient's World. Never question, chastise, or try to reason with the patient. Join her in her current "place" or time, wherever that may be, and find joy with her there.
5. Enrich the Patient's Life. Create moments for success; eliminate possible moments of failure, and praise frequently and with sincerity. Attempt to find humor wherever possible.
These tenets require continuous examination of how the patient thinks, feels, communicates, compensates, and responds to change, emotion, and love."
My own father suffered from dementia and had to live in a care home the last years of his life. Living long-distance from him kept me from having to deal with the issues of his daily care. Thankfully, my brothers and dad's longtime companion who lived closer were there for him.
Dad was a man I had difficulty loving for most of my life after all of the abuse and emotional distance during my childhood with him. Fortunately, I had done my own emotional healing "work" to be able to forgive and love him long before his death.
As I recall my last visit with my dad, he showed no sign of knowing who I was and everything he said was incoherent. I responded to him in the "place and time" where he was as best I could. And I just held him close and repeatedly said, "I love you, Dad". Never before in our lives together had I felt closer to him. Somehow, I experienced joy in our connection that day -- a joy that brings tears to my eyes as I write these words ten years after my father's death.
Thank you, Jean Jordan, for sharing your personal experience of "when love is not enough".
NOTE: On Saturday, June 2, the Alzheimer's Association is holding an all-day conference called "A Meeting of the Minds: The Puzzle - Thinking, Feeling, and Understanding Alzheimer's". Held at the Willamalane Adult Activity Center in Springfield, the conference is open to anyone who wants to learn more about Alzheimer's. Call 345-8392 for more details and to register.