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12/13/2013

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Erika N

This is a really nice post on end of life care. I am glad you wrote it- and a very brave topic to blog. We had these family discussion with my dad 8 years ago when he was entering that end of his life phase. We haven't yet gotten there with my mom, but at 84 I am sure it will be coming. Thanks for reminding me of all that needs to be thought of, kind of pushed that out of my head since Dad passed. And you Mosses seem to be a great family, your mother (and all of you children) are very very lucky.

Sue

Carol, thank you so much for this very informative post. You have shown us the love and care you have not only for your mother and family...it shows for all of humanity. You all are so fortunate to have each other. My best wishes to you and your family in this journey.
P.S. Your blog, as well as MAM's, are so welcoming to me each morning. Thank you for sharing with us!

Vicki in Michigan

My parents have had this talk with me and my sibs. They have same intentions as Angie. (As do I, for myself! I wonder, now, how often anyone actually wants extreme care for themselves..........)

I have not yet experienced this sort of journey with a parent, but I've had several dogs reach the ends of their lives. As someone above said, it's different every time. And it's always hard.

The switch from doing everything you can to keep them going, to preparing for death, is a very hard one to make. A complete rearrangement of goal and intent......

One of the life lessons I am working on learning is -- "when is it about me, and when is it NOT about me?" In many situations, I think it's really useful to stop and ask myself "Is this about me?" A thoughtful and honest answer to that question can help me see what I ought to do.......

Thank you, Carol, for sharing your knowledge and expertise with us. While our parents' paths won't be just the same as Angie's, the destination is the same. Your voice from ahead is compassionate and informative. Thank you.

Vicki in Michigan

I just realized I have a question.

One of the things I wonder about is -- what to do when they don't want to eat. I entirely believe, with you, that eating less is one way of beginning to shut down. My mother has said "If I don't want to eat, leave me alone!" I agree with her, 100%, but I think the tendency to urge people to eat is very strong, and would be hard to decline. I see this as a potential issue with care givers.

It's a gray area -- it seems to me that offering is fine, but urging ... not so much -- and I wonder how hard it is to get on the same page with care givers. I wonder to what extent they expect that people near the end of life will be far less inclined to eat.

Maureen

Carol, I'm a reader of MA's blog and finally decided to add some more blogs to my reading list, yours included. I am 69 myself and neither my dh nor I have living parents so when this topic comes up it's each other that we consider. One of my dearest friends is a Patient Advocate and has made me aware of so many end of life issues to consider. She also has encouraged me to become a Hospice Doula.

Because of this, I have just started as a hospice volunteer and coincidentally (god does have a sense of humor) read this book. Jane Gross's A Bittersweet Season: Caring for Our Aging Parents--and Ourselves. While it has a tremendous amount of good information, it is randomly thrown out in the book, a book which flips back and forth between the raw emotion and the practical advice. Should you know of a clearer one, I'd appreciate hearing about it.

The one thing I found 'to do' in 2014 is find all the paperwork necessary for the Medicaid application on the presumption that we may very well need one in the years ahead.

Lots of love the the Moss clan as you move forward together.

Susie LaFond

Love that you shared this Carol as difficult at this part of 'living' can be. Your tender insights are so vital and important. I've already been down this path but my spouse and I already know what we want and don't want should the issue arise, our DD's are both young adults now so the time will come very soon when we need to take the steps to get it all in writing, so now I'm on the side of things were we are the ones who have to start thinking about 'just in case something happens' the unexpected the life changing issues and at my 54 years, finding that part hard as we are still young punks but the adult in me knows we've got to get it on paper and all 'legal' for our sake as well as for our daughters. Angie is in good hands and the Moss kids our at the helm. You are all so lucky to have each other!

Angela

Carol,

You have captured the essence of this issue so eloquently. My thoughts and prayers are with Angie and all of you who love her so deeply.

You are a gift to the world.
Blessings, Angela

Chelsy

So beautiful. I knew you were a nurse, but I didn't know you were a palliative nurse! Palliative is a word I learned just this year, through another blog. I'm having trouble finding words, because everything I'm writing I'm deleting because it sounds too cheesy. But I'm in awe of you, all who work in palliative care and hospice. Braving what others shy away from, guiding those who walk toward the great unknown, it's a beautiful thing. Thank you for sharing this, it's definitely something I need to think about. A part of me says it's not necessary yet, there's plenty of time. But who really knows. Thank you! Here's the blog I learned about palliative, in case you're interested: avianareese.com

Carol

Vicki, in response to your question about urging people to eat... When people don't want to eat I believe the loving thing is to respect their preferences. So much of our culture revolves around food and it is hard not to want them to eat. For the person who is dying eating can become a burden and it can cause discomfort. I try and encourage families to let their loved ones eat what they want, when they want it, and only in the quantity they want. This is the approach I am taking with Angie as well. Carol

Carol

Maureen: in regards to a good book about end of life care, there are many and it depends on what you are looking for. The book that I have given to others and recommended the most is "Handbook for Mortals" by Joanne Lynn.

barbara

I knew you were in the medical field, but did not know it was in palliative care. I have so enjoyed getting to know you through Mary Ann, and also sweet Angie, Dottie as well, the entire Moss family. Your post is so very informative, and timely for me. My family is dealing with much the same issues right now, and in the beginning stages of the experience with Hospice care. My sister is the one who lives locally where my parents are and I am the one who travels to be there as often as possible. I am leaving on Tuesday and will stay for 3 weeks this trip. We have a meeting set up next week with the hospice care people and the director of the assisted living facility. My sister has passed on to me the details as far as what she has learned. I had thought hospice was for only at the very end, and am learning they have many different roles and levels. I am now learning more just from reading your post as well as all the comments from people who have gone through this. Thank you so much for opening up this discussion.

Liv

Thank you Carol for sharing wise thoughts. I whish I could have the same conversation with my parents, they are in their 80s, and time draws closer. Hugs

Moonie

This is a great post. My mother died unexpectedly but my father was in care for 6 1/2 years before he finally succumbed to his illness. Lucky for me, I'm an only child without any of the difficulties many friends of mine have had with siblings about everything from DNRs to funeral plans. My parents both pre-planned their funerals and pre-paid for them in the funeral trust which holds the money in trust until the death. That was very helpful to me. That way their wishes were all documented and didn't have to be remembered in a time of grief by the person feeling the grief.
My inlaws haven't done any of this yet and I keep urging my husband to have the conversation but maybe instead I will talk to his sister who is a doctor- a palliative oncologist. I followed MA's link to your blog and maybe that was for a reason. Thanks Carol!

Decorina

Wow. Just beautiful. I found this through your sister's blog, which I've been reading for years.

jeanette, mistress of longears

You have such wisdom in facing tough issues. I long ago created a living will and durable power of attorney and have told my son exactly what I wish for when I can no longer communicate my desires. This is not only very important to me, but it is also the best gift I can give my son, relieving him of any doubts or misgivings.
It's good to know that you are part of a very supportive family. Sharing your journey is helpful to all of us.

Chris Oliveira

Hi Carol, I have come to love Angie through your blog, and I wish her peace and the comfort she hopes for. I wish the same for you and your siblings. This is so hard, I do know...yesterday was the 13 th anniversary of my mother's passing. She had some hard things to endure at the end of her life with Progressive Supranuclear Palsy. She had always been very clear about her wishes too, including no tubes, but at the end I still struggled with watching her suffer through every meal. She couldn't tell me at that point if she would change her mind now, but I stayed with her original wishes. I am not sorry for that. Whatever happens, and whatever you and your siblings do, there is no question that you will do all of it with great love for your precious mother. With that as your guide, you can't go wrong. Christmas Blessings to Angie and the Moss family.

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