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    • #20262

      Talking about end of life topics such as medical care, hospice, wills etc. are all tough to discuss, but much needed for everyone. People with and without ALS need to be prepared for the end of life. We need give considerations to wills, who will make medical decisions on our behalf and how and where we choose to live our final days.

      What have you done to prepare? What do you think needs to be included.

      Do you struggle to talk about difficult topics?

      Do you have organizations or websites you could suggest to others to help?


    • #20266
      Jim Knepp

      I was an elder lawyer for 37 years before ALS forced me to retire 2 years earlier than I planned, so I had a lot of experience talking to people about end of life decisions – and I have followed my own advice. Please remember that I am no longer a lawyer, having voluntarily surrendered my license in 2016. My first piece of advice – as a layman – would be to talk to an elder lawyer. Don’t go on-line and be your own lawyer and don’t pick an elder lawyer blindly from the telephone book or tv ads. Talk to your family, friends, or someone from your ALS Association to get a recommendation.

      Each situation is unique – one size does not fit all.

      My Wife and I have a Will, Trust, Appointment of Health Care Representative, a Living Will, and Funeral Directives. I also have a ALS Respiratory Information for EMT’s, a Health Care Directive for an Individual with ALS (including a VSED provision [voluntary stop eating and drinking provision]), and a DNR.

      I want to emphasize again – I am no longer a lawyer so I am not saying that you should have these documents. I am simply saying that my Wife and I have these documents because they are what we believe to be appropriate for us.

      My Wife is my designated Health Care Representative. I have 2 adult Daughters, but I have designated (1st) a friend of almost 20 years and (2nd) another friend of almost 30 years as successors to my Wife. I have written a letter – in non-legal and non-medical terms – giving guidance to my Wife and her successors of what I would like them to do if I cannot make medical decisions for myself. I had a mentor when I was a young lawyer: my mentor was a very good lawyer and a better person than most. He told me that the toughest decision that an individual may have to make is an end-of-life decision for another person. I have included in my “instruction letter” to my Wife and her successors a clear statement that they are not making an end-of-life decision for me, but simply expressing my end-of-life decision should I be unable to speak for myself.

    • #20267
      Mark S

      Jim gave an excellent professional legal view.

      When I have helped the dying, I asked questions and listened.  What do you think it will be like? What is your view of afterlife? What do you need? Who do you need to be with? Any people you need to reconnect or reconcile with? What can we do for you so you are supported?

      I know what I would think I want, but that could change in a second.

      In having these discussions with many patients, families and professionals, I absolutely could have never predicted the endless range of needs and beliefs.

      The commonality is no one wants to die in a hospital. Yet, 60% do and another 20% in LTC facilities.

      I know the focus is on medical breakthroughs, but the absolute most important moments in my life were with the dying. Some in months leading up to and some where I held their hand at the last moments. We need to be so much better in this regard.




    • #20271
      John Wagner

      Hi, folks!  I so appreciate the previous responses.  My approach to this matter is likely somewhat different than the approaches of many.

      I am a Priest in the Episcopal Church and ensured at each and every parish I served to do evening sessions on end-of-life planning every three years or so.  My preferred materials come from  Their materials work for folks of nearly any (or no) religious background.  I have had Five Wishes materials reviewed by local legal counsel who assured me that the materials met the requirements of the Commonwealth in which we live.

      While, in the beginning, these sessions were not easy the comfort they brought folks in the midst of losing loved ones were true blessings.  I have had, over the years, many sons and daughters of the deceased come and thank me for ministering to their parents in this manner.

      Having attended the deaths of many people, I do want to stress that the perfect person to select as a healthcare proxy is often a trusted friend rather than a spouse or family member.  I find that those on the brink of becoming widows or widowers are truly thankful that a golf partner can make the choices necessary as that time approaches.

      While there are many settings in which these evening presentations could be made, it does seem to me that those of us in the “eternity” business should be well-equipped to do those presentations (with help, of course, by other professionals such as attorneys).

      As I have ALS, I already have my Five Wishes forms completed with two fellow priests designated as my healthcare proxies.  I named two just to ensure one would be available when the time arises.


    • #20278
      Rhonda Hill

      ( my first time to chime in on any subject ) Hello. I am my X husband’s care giver. He has been diagnosed with ALS for just over a year now. Any time I bring up a living will or healthcare …any end of life subject , he tells me , now is not a good time. Maybe as John mentioned, getting a none family member to talk him through this would be better. Am I expecting too much out of him ? Is it too soon ? He had a cold this last week and scared me to death. I just knew this was the end for him ! But he is getting better. This made me more worried about his end of life plans not being taken care of.
      It’s not death that scares him , I think he thinks we ( me and the kids ) can take care of these things as they come up ?

    • #20289

      I helped 3 parents (F, M, MIL) leave this world and I wish I could have just been a daughter. Now I have ALS. So…my end-of-life agent is a woman who has been my husband’s and my good friend for decades. She will do the heavy lifting, freeing my husband, son’s, siblings, and other friends to just be my loved ones.

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