Five Wishes

Layout 1CAREGIVING:  On Wednesday afternoon after the palliative care nurses left, I went over some more parts of Five Wishes, an advanced directive plan or living will. I’m sure there are a million living-will forms on-line but this is the one I found years ago. At the time that we started this, Kathy had not been diagnosed with Huntington’s Disease although I suspected she had it due to her angry outbursts. We went to therapy for years and years and years. Whatever disappointments I was triggering in Kathy’s life were being amplified by Huntington’s into spectacular outbursts of anger. But at one point I tried to use a therapy session to convince Kathy to do a will and a living will. We couldn’t get very far at all and other things came up. I don’t think we talked about it again until we had our will done.

By then we knew about the diagnosis of Huntington’s, and Kathy and I were pretty much back to normal. My lawyer and songwriting friend, Fred McCoy, drew up a will, health care proxies and durable power of attorney for each of us. But he stressed that the “Living Will” is really something personal that we have to do. We have to decide and let people know what we want and what we don’t want. So the health care proxies mention that we might create a directive similar to Five Wishes but it didn’t go into any detail. We took our new legal documents and put them in a little fireproof safe we purchased. We felt like adults! Until we couldn’t find the key for a few weeks.

Flash forward to last week when I found Kathy’s copy of Five Wishes had been partly filled out. The instructions are to cross out any phrases or statements you disagree with; and write in any changes or specific wishes.

Layout 1Wish 1: The Person I Want to Make Health Care Decisions for Me When I Can’t Make Them for Myself. This repeats what is already on our health proxy. It says that I am her health care representative in the event that she can not make decisions by herself. Her first alternate is her sister from North Carolina, Becky.  Five Wishes has a line for a third alternate which is a good idea as we all get older.


Wish 2: My Wish for the Kind of Medical Treatment I Want or Don’t Want
This was the part I was figuring was blank but it turned out Kathy had indeed figured out her wishes.  Some of them at least. Remember that we can always change our wishes and do a new plan, so we still needed to confirm it. This first page of Wish 2 had writing or crossed out sections.

Layout 1The first part was What You Should Keep in Mind as My Caregiver.  There are bullet points about not wanting to be in pain, about not having anything done or omitted with the intention of ending life, and about being fed fluids and food by mouth and kept clean and warm. The next part was What “Life Support Treatment” Means to Me. It lists many of the aggressive efforts that can happen: tube feeding; CPR; surgery; dialysis; antibiotics. Nothing was crossed out and the lines available for comments or changes were blank.



Layout 1The next page was filled out, and that had the answers we needed. There were “scenarios”: If I am Close to Death; In a Coma and Not Expected to Wake Up or Recover; Permanent and Severe Brain Damage and Not Expected to Recover. Kathy had selected the third option for all the different scenarios:

I want to have life-support treatment if my doctor thinks it could help. But I want my doctor to stop giving me life-support treatment if it is not helping my health condition or symptoms.

A fourth section was: In Another Condition Under Which I Do Not Wish to be Kept Alive. This last section encourages you to write any specific conditions when you would not want life-support. Kathy wrote in “End stage dementia – no life support”.  She didn’t fill out any of the other parts of the form. I asked and made sure she still felt that way.

Layout 1Wish 3: My Wish for How Comfortable I Want to Be. We are just figuring out some of these last wishes now. There are a number of statements she agreed to and left alone. She doesn’t want to be in pain, even if it makes her sleepy. If she shows signs of depression or nausea she wants us to try to help her. She wants her lips and mouth kept moist and I suggested we use Carmex. She smiled. She wants to  be kept fresh and clean at all times. She mentioned that she would like to listen to classical music. Note she didn’t mention my music but it’s not surprising:-) The only part she wanted crossed out was any type of religious readings or poems read while she is near death.

Wish 4: My Wish for How I Want People to Treat Me. Basically she does want people with her when possible. She wants someone with her when death is at hand. She wants her hand held and talked to even if she doesn’t seem to respond. Again the  only sections she crossed out were the prayer and religion paragraphs. She doesn’t want bedside prayers or anything like that. And after the section that says I want to die in my home, if that can be done, she had written “If possible”.

Wish 5: My Wish for What I Want My Loved Ones to Know. We haven’t finished this part yet. But there are obvious sections that most people would want. She wants her friends and family to know that she loves them. Wants us to forgive her, for the times she may have hurt us. If we have hurt her, she forgives us. There is a sentence: I wish for all of my family members to make peace with each other before my death, if they can. She wants to be remembered the way she was before she got ill. Wants us to respect her wishes even if we disagree with them. She did say she wants to be buried rather than cremated but she didn’t know where she would like to be buried. There are lines about how I wish to be remembered and plans for a memorial service. There is a section for other wishes like donating her body for science. These are all blank for now but at least we have made a start.

The Five Wishes website, if you want to get started is called Aging With Dignity.


I wanted to thank everyone for their kind support on Facebook and repinning my posts on Pinterest. Writing this stuff is a part of how I’m making sense of it. But it isn’t for everyone and I may be depressing the crap out of people. Sorry. Just remember that we have good days and not so good days. They still seem to be alternating. 🙂


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