I'm 54 years old and lost my sweetheart of 40 years to limb onset ALS in March 2001, he was 54 then. Yes, we met when we were 14! Tony was diagnosed in 1997 (after a year of early symptoms), refused all interventions and remained at home, except for two very brief hospitalizations; once for a Pulmonary Embolus and once overnight for a 'chest infection' which was actually carbon dioxide build up. I had a caregiver helping out 10 hours a week, as I worked part time, otherwise I cared for him myself. It was exhausting, and I made lots of mistakes despite being a nurse. I contacted Shirley in case I could help others currently walking my path, in any way. I'm recovering, still grieving, but much stronger now. I was totally depleted for at least 9 months after he died.
Laughter helped us on this journey, as it always has in hard times. To be honest, especially to ourselves, pretending every thing is OK is stressful and takes energy we can't afford to waste. Other people can't always handle raw honesty though, we’re all different. But we did find making fun of silly little things reduces stress. We were able to laugh until about three months before he died, then his care and illness were so energy consuming we lost even that.
Sincerely,
"You have not lived today successfully unless you've done something for someone who can never repay you." John Bunyan
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