As my mother’s condition with Alzheimer’s became more certain and symptoms more distinct, we siblings became increasingly concerned for both her and our father.  They were fiercely independent.  Dad resisted every suggestion we made for procuring serious help.  Although he already had health issues, I believe the burden of caregiving and his grief for mother’s declining health contributed greatly to his unexpected death.  We had anticipated mother would precede him in death; she actually survived him by a decade.

Stories like ours are legion.  In a newsletter from the Alzheimer’s Association tribute is paid to a dear man who was the primary caregiver for his wife for twelve years.  The account of Robert’s life indicates he had always been service oriented.  Although his care for his wife was loving and generous, the extended duration of the demands of caregiving impacted Robert’s unexpected death.  He died as he was preparing to help his wife (of 64 years) into bed.  When they were found, sadly, she was discovered still waiting in the living room for Robert’s loyal and loving care.  

The stories of our dad’s and Robert’s unseemly deaths raise questions about the avenues of support and help possible to protect the caregiver from burnout and even premature death.  Paid assistance is an obvious option.  But I want to focus on the possibilities in “loosely” organized volunteer churh and community groups.  Call it organized compassion, or life-saving networking.  People have their own lives and responsibilities, but compassionate people, when brought together and their skills welded, can help with the arduous tasks of caring for a chronically ill loved one. Go to “Lotsa Helping Hands” at www.alz.org for suggestions/group calendar to help keep track of people offering to help. 

In the November-December 2007 AARP magazine Sheree Crute cited a website dealing with how to set up and maintain a more sophisticated networking group.  The site is www.sharethecare.org.  It provides information about how to purchase and use a practical handbook, Share The Care, in working with a networking group.  Crute cited such a group in Honolulu who offered their time and skills to help an elderly man take care of his wife Peg who has ALS.  Cleverly, they called themselves “Peg’s Leg’s.”  Payment is required for some of the information on the website.

If an “all out” networking project does not seem feasible, consider some downsized ideas for ministering to caregivers as individuals or as a group.  If a group approach is used, a simple chart could be developed with needs and time matched to volunteers, their availability, and their skills.  Though it sounds simple, the maintenance of group care assistance requires dedication and persistence. 

If you want to help the caregiver, consider these ideas:

·         Learn about Alzheimer’s disease, signs of caregiver stress, and local resources to enhance your confidence and authenticity as a helper.

·         Ask the caregiver to share her story – repeatedly as time passes – and to help you understand how you can help.  Explain specifically what you are prepared to do.

·         Communicate understanding and acceptance if you sense anger and guilt – a result of unrelenting stress.

·         Form a shared care network of two, three, or dozens of people who will commit to helping the caregiver long term such as grocery shopping, bringing in meals, mowing the lawn, handling paper work, etc. (Keep these activities flexible so they do not become an added stressor.)

·         Start a church or community support group for caregivers of chronically ill loved ones; the focus would be sharing feelings and ideas.

·         Provide regular respite opportunities for the caregiver to experience time-out: a nap, movie, art show, trip to the mall, church, etc.

·         Sit with the patient or take him/her to a community activity to give the caregiver discretionary time.

·         Encourage the caregiver to talk about her faith: be assuring of her worth and God’s love.

·         Give my book, Please Take Me Home Before Dark, as a source of emotional connection, information, practical help, and hope.  (Click on the picture of this book in the introduction to the blog to order it.)