Category Archives: Caregiver In Chief

Caregiver in Chief was an unexpected role. Many years ago serious illness hit my husband hard. I was slow to come to the realization I was his caregiver. June 2010 ALS was added to the list of grievances against his body. Caregiver in Chief. It is more of who I am than not these days – it is the nature of the beast of this disease. Sharing in the blog is meant to enlighten, give insight, help others, and brighten the readers day once in a while. Carry on.

Surviving is important, no doubt about it, without it we have no chance of thriving. Recently, my husband, Tom, that guy who has Amyotrophic Lateral Sclerosis, ALS, went through a difficult illness and surgery. ALS alone is challenging enough, add on sepsis and gallbladder surgery within days of each other after an umbilical hernia repair […]

View full post »

  To be a caregiver is sometimes a choice, and sometimes not a choice. Sometimes being a caregiver is a gift, and sometimes being a caregiver is a painful experience. Sometimes the caregiver experience is all of this and more: a choice, not a choice, a gift, painful, joyful, heartwarming, satisfying, frustrating, and limiting. On […]

View full post »

Every now and then a good day, and some luck, comes our way. It wasn’t too hot or too sunny today. Tom ‘husbands’ his strength well. In preparation for painting en plein air this morning he physically did almost nothing the last two days. Though his muscles are now depleted of energy after the effort […]

View full post »

From the day of diagnosis to May 1, 2018, this is how many days Amyotrophic Lateral Sclerosis, ALS, has been in our life. It is a lot of days. It is a long time. It feels like yesterday. It feels like time is on speed. The journey to a definitive diagnosis was a long time […]

View full post »

To some ‘on a whim’ translates to ‘let’s do it’ and it happens in the snap of the finger. To us it means, oh maybe, an hour or more to prepare, get the van loaded with everything. Everything is the painting gear – easel, tubes of paint, rags, tools – Tom and the wheelchair, Maddie […]

View full post »