My now late-husband, Michael Zink (1957-2018), was with me when we, finally, learned of my diagnosis. So, Mike became my first caregiver. It was easy at first. I was still mobile with my walker and Mike would help me upstairs. He was so good to me. Mike worked from home, which was a huge blessing. Eventually, as my muscles continued to atrophy, I began to need more help than Mike could give.
Enter the nurses and aides. The ALS Association paid for an aide to bathe me, wash my hair and teeth, and do my dishes and laundry. I really appreciated them. It wasn’t until I had a tracheostomy that I needed a nurse.
My now late-father, Thomas Haas (1950-2019), would come to see me every day. He was retired, but he still worked part-time. Every single day, he first stopped by a local Dunkin’ Donuts and bought me a raspberry iced tea. He would always be over at 3pm. So, when he would walk through the door, he’d always say, “Tea at three!” And would walk in with a joyful smile.
Eventually, as my muscles were slowly giving up, Dad found he was helping a lot. So, he asked me and Mike if I wanted to live with him and Mom. I said yes, because I wanted to give Mike a well-deserved break. My dad and my mom then became my primary caregivers. Since Mom was still working, but with retirement on the horizon, she took care of me all night. I couldn’t always sleep through the night, which wasn’t good for Mom. When she did retire, it was a great relief for her. My dad had taken care of me all day long, and we had a lot fun together. That is, until Dad got sick. He died within a month.
Then my mom became my primary caregiver. Through her grief, she never wavered in her care of me. To this day, I’m still in her loving care. I also have a team of nurses and aides: Katrina, Sherry, Stacey, and Amelia. I don’t know what we’d do without them.
No matter what, we are never alone. Our Lord of Heaven and Earth will be with us, as He always has been and always will be.
1 Peter 5:7 -Casting all your care upon Him; for He careth for thee. (KJV)
Things I Want Your Heart To Know 
I know how the care is demanding and yet given in selfless way by family members and others. Your post reminded me the pain and despair feelings I had to undergo. But I am grateful for it, as it reminds me there is still something more I can do regarding the fight against ALS. Thank you.
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I’m sorry that this post triggered bad memories. Thank you for working hard in the battle against ALS.
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I’m so glad you know and feel the presents of Jesus with you always. ❤️ You so right, your never alone!
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It is because of faith and God’s love that I can be happy in this difficult situation. To God be all the glory!
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I’m so sorry for the loss of your husband and father. I have a friend in another state with ALS and I can only imagine how difficult it is to live with. I commented earlier about another heartwarming post you made about how wonderful your mother was and it really touched my heart. I hadn’t yet learned that your dx was ALS and I mistakingly wished you a complete recovery- I apologize for that from the bottom of my heart, Jennifer. I’d found your post in reader and, because my mother and I are very close, wanted to read it. Please know that I wasn’t intentionally being insensitive. May you and your mother be blessed.
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No worries, Cherie. If you have a blog, I’d love to read it!
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I sure do, Jennifer. It’s the Chateau Cherie blog.
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I noticed from your blog that you are on Goodreads. I am, too!
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Awesome! I love goodreads!
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