Last Friday was National Caregiver Day. Being a caregiver is probably one of the hardest jobs. My husband Chris works all day, takes care of the house, grocery shops and takes care of me.
Take inventory of the things you do every day, from the time you get out of bed to the time you lay your head down on your pillow. Now think about being a caregiver. You do all of those things for yourself and take care of all of those things for your partner in addition to working full time. Sounds exhausting, right?
Things that I can do are not much of a help to Chris. I brush my teeth, feed myself, drink fluids, put on makeup, fix my hair (not very well though), and I can write this blog using speech to text. The things that I am not able to do independently are more involved and can be physically and emotionally challenging and draining. Caregivers don't ever get a break.
Here's an example of my bedtime routine. He mixes my Relyvrio and sets out my pills. I have a medicated lotion that he puts on my feet. He empties my catheter and transfers me to bed. I'm not able to roll side to side by myself so he has to position me on my side. Then he helps me with my ventilator mask. He gets my heel protectors on and then covers me with the blanket.
In order for a caregiver to get respite, hiring private caregivers is sometimes necessary. Caregiving is not covered by insurance. The cost is strictly out of pocket, but we have to do it. If my husband doesn't get a break, he eventually won't be able to take care of me. I'm sure there are many days when he wakes up and does not want to be a caregiver.
Please appreciate those who take care of others. For some it's a full-time job. If they seem cranky or absent minded, have compassion knowing that they have a lot on their plate.
Those of us with ALS, and other chronic diseases, appreciate everything you do for us. Thank you for staying by our side.