Last week I advocated for quality of life versus quantity of years of life, but I never really defined that term – Quality of Life (QoL). And it could mean different things to different people, right?
It is important to note that there is no “correct” definition, which also implies that there is no “incorrect” definition. As we made end-of-life decisions for Carlton at our house, we kept several things in mind, which I have mentioned often. Our goals were to keep him comfortable, clean, and as content and calm as possible. (He would smile at the alliteration!)
But it also meant keeping ME from having to do more work and from having to learn new medical procedures and devices whenever possible. For instance, we decided on a Foley catheter during the final 18 months of his life to keep him from falling as he got up to hurry to the bathroom. That was something new for me to learn how to care for, and at first it was difficult to figure out. (YouTube videos were a big help!) But it kept him from falling so often and perhaps injuring himself.
We decided against a feeding tube for several reasons. He loved to eat food, even pureed food, and our mealtime together and with family was pleasurable for him. And I just hated the thought of having to learn to care for a new medical issue. That was a difficult decision, but I am convinced that we made the correct choice for us. There are those who truly NEED the feeding tube, and they are thankful it is an option.
Perhaps a key to the definition of QoL is also retaining as many of the pleasurable activities of life for as long as possible. These can be as simple as listening to music, watching birds, enjoying a good meal, watching movies, feeling the softness of a favorite blanket or pillow, petting a dog or cat (live or stuffed), and being in the presence of loved ones.
So, as our loved one’s condition deteriorates, let’s do everything in our power to preserve their quality of life by surrounding them with enjoyable experiences. We may find that these things lift our spirits as well.
Care for Parkinson's 
These examples are simple yet so profound. Your book is going to help so many, Cheryl.
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Thank you, my friend.
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Quality over quantity has always been my goal!
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Amen! Good to “see” you!
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Quality of life is something that I too think about often. In my Cheryl’s case this means seeing and being with family as much as possible. Thanks for reminding me to pay attention to how she feels about those pleasurable moments.
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You are so welcome, Paul. Sometimes with declining cognition, we aren’t sure what pleases them most, but when we can sense it, that’s a good thing. I think time with the family goes both ways – good for the family, and good for our loved one with PD. I had to keep telling myself that the effort was going to be worth it in the end. Sometimes it is a boatload of work to manage it all. You and your Cheryl are in my prayers.
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I’ve read and re-read your QoL discussion a few times now. Thinking about how I feel about that specific issue. I have a story – My dad was diagnosed with colon cancer in the summer of 2007. He passed away about four months later. He was uninterested in going through extensive surgery and recovery from that to wait for something else to kill him. We had that conversation before he passed. It was his attitude through life. He took early retirement from his company in the early 80’s as they were offering it to the old guard to keep things afloat then. He is a hero to me for his attitude about life and what it brings and empathy for others…. and the fact that death is apart of life.
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I love the fact that death is a part of life. For us, death was natural, organic even. We talked about death often, especially in the last 18 months. I wanted to know if Carlton wanted all of us present in the room when he passed (not that I could have planned that), if he wanted to die at home or in the hospital, etc. I read somewhere that people die as they have lived. He was a very private person, and he died quietly, in his sleep, with one daughter sleeping in a chair beside him. I would be honored to die that same way.
Thanks for sharing your dad’s story. (My dad also died of colon cancer!)
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Mom and I had lots of death discussions too before the end of her life. Cheryl and I have had several down to earth discussions about services and internment. That is all squared away. — I’m just hoping the big new bed helps.
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Cheryl, thank you for your observations!
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It’s my pleasure. I am praying for you both. Call if you need me.
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