By Terri Corcoran

"David died!" Virginia exclaimed to me over the phone.  Shortly before that on an icy evening in February 2007, Virginia had called frantically to ask me to pray for her son, David, who had collapsed at work and was taken to the hospital.  

At 52 years of age, David had for several years been lovingly caring for his wife, Lisa, who was severely disabled from multiple sclerosis.  I met his mother at a prayer meeting in 2004 - I joined the prayer group with my husband who was becoming progressively disabled from Fragile X-associated tremor/ataxia syndrome (FXTAS), a genetic neurodegenerative illness.  Virginia, a lively, lovely eightysomething lady, took me under her wing. We developed a close friendship, and I "adopted" her as a spiritual mother.  I would call her when I was at the end of my caregiving rope, and she would pray with me through the crisis until I felt better.  

Virginia would often tell me about David, and how she worried about him.  He worked the night shift at a printing company, got home around midnight, grabbed a few hours of sleep, then rose early to care for Lisa.  And oh how he cared for her!  He did everything for her - dressing her, feeding her, moving her arms and legs for exercise since she could not do it herself.  He hired an aide to stay with Lisa while he was at work, but the rest of the day he did it all himself.  Virginia was always worried that David was not sleeping or eating enough and that he was getting really thin.

Although Lisa was totally wheelchair-bound, David took her on car trips - most recently to a family reunion in New England and to another family event in Florida, where he even managed to get Lisa onto the beach.  Lisa loved David so much and was totally dependent on him.

Virginia introduced David and me to each other through an exchange of e-mail addresses.  We would occasionally send each other a note of caregiver encouragement or share some information we had found.  David was the person who told me about the Well Spouse Association - he had read about it somewhere, but never had the time to become a member or go to meetings himself.  I was thrilled to find out about WSA and immediately joined my local support group.  It has been a true lifesaver for me.

I only spoke to David once on the phone.  On a day when I was totally discouraged and despondent about my husband's failing mind and lack of ability to communicate with me or to do anything for himself, I called David at work and asked him, "How do you do it?  How do you have a marriage when your partner can't do anything?"  He just told me, "We both take happy pills (antidepressants) and we laugh a lot!"  I knew from his mom that David had a great sense of humor, along with his seemingly boundless energy and determination to do everything in his power for Lisa.

I often wished that I could be as "good" as David.  I was really struggling physically and mentally with caring for my husband.  I was burning out badly in 2005, at which point I hired everyday aides to help.  But I have been very lucky, because for the time being, at least, I can afford the help without having to work.  David was not so lucky, and that is where our healthcare system failed miserably.  He had to work to pay not only for life's necessities, but also for the barrage of Lisa's medical expenses and home health aides -- the immense costs of catastrophic illness for which there is no insurance or help from Medicare.  David had heart disease which he was unaware of because he didn't have the time to care for himself.

I never met David in person; I only saw him for the first (and last) time lying in his coffin at the funeral home.  He didn't look sick - he looked so strong, lean and healthy...but David had died.

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There are many, many "Davids" who are literally working themselves to death to care for loved ones because our healthcare system offers very little help in these situations of catastrophic illness.  So much money is wasted on the bureaucratic administration of our ridiculous healthcare system (think of the huge volume of Medicare info we get every year - can anyone really read or understand it? - and the over sixty Medicare drug plans with their huge volumes of rules that are impossible to sort out); surely this money could find a way to go directly to family caregivers instead!  My hope is that David's life and death will inspire some positive change for the chronically ill  and their devoted caregivers.

PLEASE DON'T LET THIS HAPPEN TO YOU.

• As caregivers, we must first care for ourselves, lest we no longer be there for our ill spouse who needs us.
• Take care of your health!  Have check-ups, try to eat healthy, exercise and sleep.
• Know that you can't do everything by yourself, and seek help from family, friends, support groups, local agencies, and counseling.
• Make time for yourself - for relaxation and for enjoying the activities that energize your spirit.
• Prioritize - just do what is most important first every day and if you can't do the rest, don't worry about it.  As they say, "don't sweat the small stuff."
• Learn to say NO (without feeling guilty) to things you cannot do - no one should expect you to do what you feel is impossible.
• When you feel over-stressed, stop what you are doing as soon as you can and try to regain your equilibrium in whatever way works for you (prayer, meditation, a snack, even a good cry!).
• Love yourself!  What you are doing as a caregiver is beautiful, loving, and very special.