Alzheimer's and dementia. Frightening terms. Unknown territory. A place we do not want to travel. But as with so many journeys we take in life, Alzheimer's and dementia often arrive without fanfare; insidiously progressing until they are finally named and we realize our lives are on a new course for which we have not packed nor collected road maps.
This particular journey began five years ago one bright and sunny afternoon as Lilian, a warm and gentle wife and mother of grown children, went for a walk in her neighbourhood, as she often did. On this day however, life for Lilian and her family started down an unfamiliar road. Lilian wasn't able to find her way home. The first of many transitions were underway.
Eric became his wife's primary caregiver and found that there was much to learn and many difficult changes to come. What is immediately apparent on meeting Eric is that he continues to share a very deep and abiding love with Lilian. His care and affection are clearly evident. I was curious to know how he had navigated the physical and emotional challenges of caring for his wife at home, making the decisions necessary to move her to a nursing home and managing the myriad of changes in his own day-to-day life. We recently met for coffee and he shared some personal insights and practical strategies.
Process is the word that permeated our time together; the dementia process, the process of lifestyle changes, the process of moving, the process of finding support services, the process of healthcare routines, the process of establishing a healthy balance, the process of processing the processes. Each process has been a journey of learning - of trial and error. With no pretence of having all the answers, Eric described an early turning point at which he came to view and live out his new life with Lilian as just that, a new beginning. He takes every opportunity to learn as much as he can and to contribute in every way possible to providing meaningful care for Lilian.
Each day at mid morning he heads to the nursing home, a short distance away. He stays to help her with her lunch and heads home in the afternoon after he has settled her in with Room 217 CDs playing and she has drifted off for a nap. Lilian has always been musical and music continues to be a very special point of connection with family. She responds to songs. She remembers the words to many and sings along by mouthing the words, albeit inaudibly. Although she no longer walks unaided, her feet also dance delicately to the tunes. Visiting school choirs and bands and traveling musical troops are activities that continue to bring Lilian pleasure and that her family can share with her. It has taken time for Eric to find this balance and he has come to appreciate his part in the process - allowing the nursing home staff and the doctors to bare the weight of Lilian's physical and medical needs while he and the family focus on providing the necessary emotional and social connection, as only they can. Although he is not certain of how many memories remain, Lilian always lights up when family arrives. There is a bond and a familiarity that endures.
When I ask Eric how he would advise those beginning the journey of caregiving, he offers several thoughts.
- Get connected is the first. Don't wait. Ask for information on services to help you with practical daily needs. Connect with your local Alzheimer's society and support groups. Eric attends a monthly Alzheimer's Caregivers Group for men in a neighbouring town, as well as, a Family Council provided at the nursing home. Both groups bring in informative speakers and help to keep him connected to what is available and happening in the community.
- Eric also recommends ensuring you take some respite time; although, he admits to having to have his arm twisted a few times to take a needed break. He enjoys brief getaways to the cottage of old friends and time with family.
- He recognizes his own physical limitations and has established a routine for his visits to the nursing home that works well for both he and Lilian. It is necessary to set healthy boundaries and to share the load.
- Remember your own needs for companionship. Eric finds support with family and friends. He also enjoys Chelsey, the small dog he has adopted from the humane society.
- Stay involved, is his final recommendation. Eric is active in his church, attends men's conferences when he is able and assists the local legion with November poppy sales.
As Eric and Lilian celebrate their 62nd anniversary, it is evident that there is neither a formula nor a secret to how he has chosen to live his life as a caregiver. There is no mantra that attempts to shape his attitude. His life as caregiver is what it is and who he is. He chose love, devotion and companionship 62 years ago and continues to actively pursue them , even in the unfamiliar, unmapped and unwelcome territory of Alzheimer's and dementia.