One night last week Abby lit a scented candle in the house – “I wanted it to smell like a nice fall day,” she said. Well that candle burned for 15 hours before I realized we had an open flame in the house all night long. This is the kind of thing that would make Neil’s head explode. It was a habit of his to check all the doors and windows, lights and stoves before bedtime to make sure the house was secure for us. I would make fun of him because, as I’ve said (more…)
Neil wanted you to see this picture, taken just weeks before his death earlier this year. Before the Stephen Hawking movie brought home the horrors of living with ALS and before the remarkable ice bucket challenge, back in 2011 when Neil was diagnosed hardly anyone had heard of ALS let alone known someone with it. It was then that Neil decided to use his journey to show anyone who would look exactly what ALS does to a husband, father, son, brother, neighbor, friend. His plan was (more…)
A friend reached out to me on the six-month anniversary of Neil’s passing. I wasn’t watching the calendar and really every day is a hurdle not made different by anniversaries so I wasn’t especially prepared. But she noticed the date and sent me a note. She said she misses him too. Her gesture reminded me that Neil left a bigger void than just the one in our house. Our community noticed when he was diagnosed, noticed when he (more…)
When the moment comes and the deck is cleared of all kids and other witnesses, occasionally I will indulge in an anger rant. In my head or in my car, in the car wash, into my pillow, in the hottest possible shower. It’s that stage I guess. I read that there is no straight line order to the stages of grief – we go back and forth through them all and hope (more…)
I think the hardest period is Mother’s Day through July 4th. These weeks are peppered with dozens of sweet memories, kid mile-markers, Father’s Day, Neil’s birthday, the “worst day ever” anniversary of the day we received Neil’s ALS diagnosis, and the anniversary of the day he and I met. I know the dates like the back of my hand and I have 26 years of life with Neil that were made more better than worse because (more…)
Someone said to us recently “You can’t control everything.” Well this certainly would have been a newsflash to my beloved Neil. He was what you might call, with love, a “control freak”. He preferred “control enthusiast”. Call it what you like, we actually believed we had this ALS thing under control. We had the tools, technology, space, vision, friends, family and courage… all we needed was time to prove that our journey with this thief ALS would be extraordinary. Even on his last night (more…)
I once heard that living with an ALS diagnosis in the home can best be described as a “hurricane”, and that solace comes from finding a rare and quiet space away from caregiving and managing the illness. I am certain this is normal, and the reason why caregiving for seriously ill family members shortens the life of the caregiver by an average of 7 – 10 years.
That doesn’t describe my experience.
Believe me the winds kicked up regularly and there were hard times, sleeplessness and sore muscles in the 1,365 days (more…)
When someone you love becomes seriously ill, you quickly become expert in the science and technology behind keeping them alive. Or, at least your expanded vocabulary makes you sound a little smarter. For example, I now can properly use the words “inspiration” or “expiration” as it relates to inhaling or exhaling (not just motivating or dying). I know that the nose is the primary humidifier of the body and that humans are born obligate nasal breathers. I know that (more…)
My sister’s beloved husband passed away unexpectedly in December. He was a good man, a loving husband, father, son, brother and uncle to Abby and Patrick. This picture was taken about a year ago, when he challenged me to a hike at Pinnacle Peak in Scottsdale, Arizona. We made a great memory together, which is what Gregg loved to do. He was only 61.
I say that he passed unexpectedly with admiration and a smile. In fact Gregg (more…)
The caregiving journey for progressively degenerative muscle diseases like ALS is filled with lots of lessons learned. We work very hard to 1) maintain Neil’s independence, while 2) protecting Suzanne’s back, and 3) reducing stress for everyone. Along the way we have picked up some (more…)