By Debbie Schlossberg, LMSW
Saw a CALS (Caregiver of a person with ALS) at the Walk today. We hadn’t seen each other in a while and it was great to catch up. One of the reasons I love working at the Walks is the opportunity to connect and reconnect with folks from the ALS community.
At one point our conversation turned to the topic of Living Wills and she reminded me of a discussion I had with her and her husband two years ago when I was introducing the concept of Advanced Directives (same as Living Wills) to them. She remembered me remarking that even though in most ALS cases the document per se would not be consulted at a critical moment because the expectation in most cases is that the PALS him/herself would retain decision-making capability throughout the illness, the act of completing the document is a critical step in DECISION-MAKING and communication with loved ones.
She wanted to tell me how true this was for their family-that although very reticent to even look at the papers at first, she felt that for them it was the tool which enabled her husband to start sorting out his feelings about control over his medical decisions and for them to have valuable conversations, not only about ‘procedures”, but about the arguably bigger questions: about life goals and quality of life.
It’s true that I often frame a dialogue about Advanced Directives in these terms-that it is a conversation starter and framework for thinking about what is truly important. For this family, it seems to have done just that.
Saw a CALS (Caregiver of a person with ALS) at the Walk today. We hadn’t seen each other in a while and it was great to catch up. One of the reasons I love working at the Walks is the opportunity to connect and reconnect with folks from the ALS community.At one point our conversation turned to the topic of Living Wills and she reminded me of a discussion I had with her and her husband two years ago when I was introducing the concept of Advanced Directives (same as Living Wills) to them. She remembered me remarking that even though in most ALS cases the document per se would not be consulted at a critical moment because the expectation in most cases is that the PALS him/herself would retain decision-making capability throughout the illness, the act of completing the document is a critical step in DECISION-MAKING and communication with loved ones.
She wanted to tell me how true this was for their family-that although very reticent to even look at the papers at first, she felt that for them it was the tool which enabled her husband to start sorting out his feelings about control over his medical decisions and for them to have valuable conversations, not only about ‘procedures”, but about the arguably bigger questions: about life goals and quality of life.
It’s true that I often frame a dialogue about Advanced Directives in these terms-that it is a conversation starter and framework for thinking about what is truly important. For this family, it seems to have done just that.
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