The Agony of Isolation and Family Caregiving:
An Alzheimer’s tragedy
The pain of isolation for the family caregiver increases exponentially as Alzheimer’s advances. On a scale of one to ten, ten being the highest, isolation must be at the top of the list. As a woman once wrote and providing care for her aging father, “With Easter tomorrow I’m feeling forgotten by people around me and it’s making me feel blue”. It is estimated that millions of baby boomers with be diagnosed with Alzheimer’s within the next decade. For every one diagnosed with Alzheimer’s, a primary family caregiver is becoming responsible for an average of four to six years, and perhaps as long as 20 years, after the diagnosis of Alzheimer’s according to the Alzheimer’s Association (http://www.alz.org/news_and_events_generation_alz.asp).
When I became a family caregiver for my husband 10 years ago, I was focusing on creating systems to provide the best care possible, safety was top of my to-do list and living two lives at once (taking care of all his needs, thoughts and feelings along with mine) required a shift in perspective. By the time I felt established as a family caregiver, I noticed everyone around me had disappeared, my social activities were non-existent because there was no time after devoting 24/7 to my husband, and I was feeling extremely isolated in this world ~ not even able to share thoughts and feelings with my husband for fear of confusing him even more.
Words that come to mind when pondering on this feeling of isolation are: sadness, mourning, loss, fear, and despair. Although I have a background as a mental health counselor and know the importance of combatting isolation, it became obvious to me that devoting 24/7 on family caregiving duties and responsibilities became overwhelming for me. Such a schedule did not leave any room for reaching out and getting in touch with others. There was no energy or desire for engaging in activities outside my home. I was simply physically and emotionally exhausted, and the expression “can’t see the forest for the trees” seems fitting.
What I found most helpful was an occasional visit from my sister and her husband who were able to see physical and emotional changes in me because they know me well. My sister did not hesitate to “drag” me to a restaurant when I was having a professional caregiver for a few hours for respite. She also did not hesitate to let me know when it was time to place my husband in long-term care because he no longer was able to walk unassisted and all the lifting on him meant my own body was starting to fail me. Did you know there is research showing that an individual living at home does not live any longer than living in long-term care?
It has been almost two years since my husband moved into long-term care but I am still recovering from being a family caregiver. I must have slept at least four months sleeping in bed or a recliner (any time of day or night) after he left home. Now that I have more time and can get out and socialize, I have trouble finding avenues where I might make new friends. Creating an exercise program that benefits me has not been as easy as I thought, but I’m getting there. Results of this isolation includes, but is not limited to, premature aging, depression, exhaustion, high blood pressure and even despair in many family caregivers. They often feel they have been abandoned by family, friends and even their close neighbors. In reality it is often the profound emotional and physical changes in them that create such feelings.
Treat caregiving as though you were a profession and take regular breaks. Keeping a 24/7 schedule is a recipe for disaster. My advice is to find in-home help or support early after becoming a family caregiver. Start from the first day to look for that professional help and get out of the house while that individual is there with your loved one. Let family members know that you need them in your life now more than ever and visit with them more often. In order to visit relatives avail yourself of respite care in long-term care where you know there is a team of professional caregivers to cover your time away from home. Take time to pause in order to be able to ask for what you want from others.
Know the four stages a family caregiver will experience (http://www.practicalcaregiverguides.com/four-stages-of-caregiving) and actively take steps to manage each stage better:
- Early Stage: Basic care
- Middle Stage: Intermediate care
- Late Stage: Advanced care
- Bereavement Stage: End-of-life care
If you care for a parent or relative outside your home, consider moving them into your home to minimize travel time on your part. Get financial advice early in order to make proper budgetary adjustments so the financial stress is reduced and it is possible to make ends meet. On holidays and special occasions treat yourself so that you feel special. Finally, you may want to consider the services of a professional Alzheimer’s coach to provide guidance and support through this challenging period in your life.
About the author:
Ethelle G. Lord has her Doctorate of Management in Organizational Leadership from the University of Phoenix (2010). Dr. Lord is an adjunct Professor of Business, author and professional Alzheimer’s coach. She has her own coaching business at Remembering for You (dot) Com and Teamwork Coaching (dot) Com. From 1992-1996 she had a private practice in mental health counseling; in the late 80s she was a paralegal for Legal Services for the Elderly and from 1992-1996 she was a two-term President of the Maine Gerontological Society of Maine. Ethelle is married to Maj. Larry S. Potter, USAF Retired and lives in Maine. Visit us today at http://remembering4you.com and contact the author at Info@remembering4you.com.