We have now met the whole hospice team assigned to us. They are awesome. Every single one. God has gifted some amazing individuals with talents that far exceed their job titles. Working with terminally ill patients and their families might sound like a depressing occupation but everyone is upbeat, thoughtful, sensitive, never in a hurry, and so respectful. I feel like royalty!
It’s been a busy week, with everyone making their initial visits. Wednesday, we met my doctor. A doctor who makes house calls. How cool is that?! Dr. B is wonderful. She asked such insightful questions, making sure she understood what my wishes, hopes, and expectations are concerning my death. (Which ain’t likely to happen this month, folks!)
With all this attention, everyone fussing over me, I almost feel like saying, “Hey! I feel fine! Go take care of someone who’s sicker!”
Yes. I do know my reality here. My ALS progression has never hit a plateau. Slow and steady. No reason to expect anything different at this stage. So, we continue to take this one day at a time.
We have a home health aide who will be coming twice a week to bathe me. One day will be a “bed bath” and the second, a shower, with Alan’s help. This will be such a big help to us! He has been doing this alone and it’s hard work. After my bath, I get some “spa” treatment: lotion & massage! So relaxing!
Since I am now cared for by hospice, we might not go see my “old” doctors anymore. Any visits must be pre-authorized by hospice. On the one hand, this is a relief as it’s getting more difficult to get me there. But on the other hand, I feel I have formed a bond with these folks, especially Dr. H at Scripps Clinic and the whole team at UCSD’s ALS Clinic. Yes, I guess I don’t really need them. But they feel like part of my support system. Plus, I love them! It’s sad to think I may never see them again!
We will be discussing this with our hospice team. What a blessing they are. I am so grateful to God for His abundant provision.
This blog was posted originally on Feb. 13, 2015.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.