November is National Family Caregivers Month. Some refer to Caregivers as Care Partners. This is often an unappreciated role, especially for those who care for people with high needs. ALS, Parkinson's, Alzheimer’s and Huntington’s are just a few.
My husband, Chris, is my care partner, but he's so much more than that. He is my husband and my best friend. He's my travel and adventure seeking partner. He was my hiking buddy.
He easily could have left when he heard those 3 letters, ALS. It has happened to others, even those who have been in relationships for many years. After speaking to the neurologist and doing some research on our own, I think Chris had some idea of what our future looked like. I'm not sure if he realized how physically and emotionally exhausting this Role would be, and I am only in the middle stage of my disease. When I reached the point where I couldn't transfer on my own and I couldn't dress myself, that's when the tough stuff began.
Job Title: Caregiver/Care Partner
Hours: 24/7
Salary: $0
Health insurance, Retirement, long term or short-term disability: N/A
Time off: None unless you find your own replacement.
Sick time: You must work despite being sick.
The job description is quite extensive. You will be responsible for dressing, bathing and catheter cares. Skin assessment is vital. You will learn the basics of noninvasive ventilation and respond to the alarms quickly. You will ensure that your loved one is comfortable, sometimes requiring frequent repositioning in bed and in the chair.
You must have a valid driver's license to provide transportation. You may have to feed your loved one and when they're no longer able to eat you will provide nutrition through a feeding tube. They will need medication set up, and sometimes administered through the feeding tube.
Other duties as assigned.
I would like to dedicate this blog post to my husband, Chris.
Thank you for finding me.
You are my husband and my best friend. You've been placed in a situation that most will not understand. You are my emotional support person and I don't always do my best at supporting you. There are so many times that I wish I could give you a hug and say that it's all gonna be OK. Unfortunately, my arms are no longer able to wrap around you and hold you close. Thank you for being my partner in care. I appreciate everything you do for and with me. I know that you are always thinking about me. I love it when you come home and you've got that devilish smile and say, “Look what I found!”. It’s often one of my favorite foods or snacks. You are one of the most thoughtful people I know.
If you know someone who is providing care for someone, think about how you can help them. Think of anything that would make life a little easier for them. Some examples would be:
making meals
Cleaning house
Raking \ shoveling \ yard work
Babysitting
Companionship
Washing windows
There is so much more that can decrease the stress of someone who is the primary the person providing care.
Occasionally check in with care partners. Ask them to have coffee and allow them time to vent.
At this time of Thanksgiving, I am very grateful that God put Chris into my life. He is the most patient person I know when it comes to taking care of me.
Happy Thanksgiving to all. Think of all of the blessings you can be thankful for. Despite having ALS, I still have things that I appreciate. I have a very supportive family. We have a nice place to live. I have wonderful neighbors who are happy to assist. I have great friends and a cuddly cat. I have a church family who has supported us through all of our trials
I can still breathe on my own, and I can still swallow and speak. And best of all I have a loving and supportive husband.
PS I wrote this blog post with the combination of voice to text and eye gaze(typing with my eyes).