Monday, June 22, 2009

A Deenie update and a note on health care proxy

It has been nearly four years since I moved to North Carolina and I have yet to get a new health care proxy. Don't do what I have done. Take care of this now. Even if you are not old, you may find yourself incapacitated and need someone trustworthy to make health care decisions for you. Many of you have probably been through health care proxy / living will / durable power of attorney (note: these three are not the same thing - consult your state law) conversations with aging parents or ill loved ones. I know our family has had these conversations. But have you dealt with this for yourselves? I have been remiss in taking care of this.

Laws vary state by state. Consult the law for your own state. Those of us who are single and with no adult children need to pay special attention to this. Who is the best person for a health care proxy? Is it a relative or is it a friend? Pay attention to the relationship's long-term dynamics as well as to the person's values. You may also write very specific directives. Not all medical situations are the same. Again, check your state laws on this, talk to a medical professional, to your lawyer, or your clergymember or counselor if you feel more comfortable starting there. This post does not constitute either medical or legal advice. (It does constitute Auntie Jane's advice based on life experience and thirty-five years in ministry and other professional work. The link above will give you a basic definition of a health care proxy and health directives.)

All this to preface the news that Deenie's situation is not good at all.

Thanks, by the way, to Helen --in the comments to the previous update --for all the information. Helen, I can't really give all the details of the primary caregiver and family situation. Suffice it to say that it's not as functional as you would want it to be, so your suggestions, while very good, do not exactly apply. And now the situation is about to change drastically.

Against all advice from the hospice and all pleading from Deenie's friends, the family member who has health care proxy for her has decided to move Deenie from her home (where she has a paid caregiver plus friends who visit all the time plus a good neighbor who is a friend and pops in regularly) to a nursing home on the other side of the city.

(Note to Helen: Deenie is no longer capable of making decisions for herself; she is too weak to oppose other people's decisions.)

This family member was not the original person who had the health care proxy. The original person found him/herself too far away geographically, so Deenie changed the health care proxy, picking this particular family member, we are not sure why; perhaps she hesitated to burden a friend, even though her friends are in many ways her family.

The nursing home in question is not a hospice. It is not set up to help people die comfortably and peacefully and in a loving and serene setting. Our friends have done some research about it and it is not an adequate facility. Deenie has always said --as she did when I visited her and she was still compos mentis-- that she wanted to die at home, not in an institution.

Our mutual friend is trying to see what she can do before tomorrow and has gotten in touch with a family member who is truly devoted to Deenie and is also trying to reach Deenie's lawyer of many years (who is terrific) in hopes that one or both may be able to intervene somehow.

The situation is messy and cruel. Our friend writes that she prays Deenie will die before this move can take place against her wishes.

Deenie's 70th birthday is next Monday.

Kyrie Eleison. Christe Eleison. Kyrie Eleison.

Lord, you now have set your servant free
to go in peace as you have promised;
For these eyes of mine have seen the Savior,

whom you have prepared for all the world to see:
A Light to enlighten the nations,

and the glory of your people Israel.

My soul gives glory to my God.
My heart pours out its praise.
God lifted up my lowliness
in many marvelous ways.

My God has done great things for me:
yes, holy is this name.
All people will declare me blessed,
and blessings they shall claim.

From age to age, to all who fear,
such mercy love imparts,
dispensing justice far and near,
dismissing selfish hearts.

Love casts the mighty from their thrones,
promotes the insecure,
leaves hungry spirits satisfied,
the rich seem suddenly poor.

Praise God, who loving covenant
supports those in distress,
remembering past promises
with present faithfulness.

God of all consolation,
grant to those who sorrow
the spirit of faith and courage,
that they may have the strength to meet the days to come
with steadfastness and patience;
not sorrowing without hope,
but trusting in your goodness;
through him who is the resurrection and the life,
Jesus Christ our Saviour.

(That last one is from the New Zealand Prayer Book.)


Caminante said...

I cry for Deenie, I cry for her friends, I cry for you.

Lord, let your servant go in peace according to your word.....

Kirkepiscatoid said...

I obviously do not know the whole story. But at least the way you are describing it, it sounds like one of those "Your dying at home is making ME uncomfortable" situations, or a "I can't take off much more work to spend time with you the way I need to" situations, or some combination of the two. But this is wild speculation on my part.

I'm praying.

Kirkepiscatoid said...

P.S. PLEASE get a proxy! (Not that I think you'll need it for the next 40 years). get a young one.

I am adding you to my list of people that I would glare over the top of my glasses about not having a proxy. The "Ex-junior high teacher" glare.

Believe me, it is not perfect. Your story above being a case in point. But it's still better than letting people who really don't know you call the shots.

Kirstin said...


Jane R said...

Absolutely! That's why I was saying this - for me too.

Dan J-S said...

It was a blessing that my mother was able to die at home in 2001. I am praying for Deenie and for grace and wisdom for all in this hour.

Joan Lucia-Treese said...

Praying for Deenie to be able to die at home.

In addition to medical proxy, PLEASE consider organ/tissue donations. As a hospital chaplain, I am required by law to ask all family members if they know their loved ones wishes or if they would authorize donation. This is a conversation that NEEDS to take place before death. Folks can register with their state dept. of motor vehicles or their state's organ/tissue center.

johnieb said...

Oh, dear: how terrible; please, Godde, for Deenie and all who love her.

Bill Carroll said...

Prayers continue for Deenie and all who love her.

janinsanfran said...

Definitely praying ...

Paul said...

Lord, have mercy! Prayers for all.

David@Montreal said...

Prayers, tears, insense offered here too.


Ken said...

The final obscenity is not Death. It is People Who Know Better. Which is precisely why a proxy is so critical.

Several things contributed to my doing one. First, the memory of my mother--unsurpassed in her selfishness and denial--refusing to protect her financial assets to tell me or anyone else how to guide her through her "endgame." So, as the only child, I got stuck having to make decisions no human being should have to make, decisions that tormented me for eight years after.

Second, Pope John Paul II and his prolonged death. He was a model of how to face death but the sight of him deteriorating was hard to watch.

Third, Terri Schiavo. The indecency of the battle over her end: I guess that says it all.

Fourth, my brother-in-law, who in March 2005 took his own life but fucked that up like he did everything else, and did not died until Memorial Day 2005.

So I did a proxy. I appointed my sons, gave specific instructions (e.g., no nursing homes, EVER), and we had a three-way call to discuss it. It was as weird a call as I've ever had, but it had to be done and so it was.

Do the proxy unless you want something like that disgusting scene in Zorba the Greek where everyone tears the dead woman's house apart.

As for Deenie...God, if you're not the ineffectual wuss that many of us secretly fear you are, please, send your angels to Deenie to remove her from this nest of well-meaning jackals. Let her die in your love. Do something right for once.

pj said...


Edelle Rose said...

I do not even know Deenie or you. But I am moved by her situation of course. Having a proxy is a good idea and one I have been procrastinating about as well as a will. This is a good reminder to get that done. Thank you! You never know where you blessings will land once you put them out there.

But the real lesson here seems to be again that we are not nor will we ever be in control. We can plan and prepare as much as possible but life may have other plans. Do you suppose there is at least one more person whom Deenie is meant to touch or one more "dying to self" she is meant to do before her death? Just a thought. Prayers for Deenie and all who love her and for all of us who will soon follow her over the edge.
Grateful for your beautiful blog with all its rich resources,
Edelle Rose

Catherine said...

The abuse of power is what sickens me. If someone says they want to die at home, then it is the responsibility of the designee to follow the wishes of the person they are assisting, not to do what is convenient for the designee, and against the wishes of the dying. This is a clear violation of the proxy or health care directive. Legal action can be taken by concerned family members and/or friends. As an Episcopal Chaplain, it is/was part of my duty to make sure people understood what the directive was and how it worked and that they have one.

Prayers are with you Jane. This is hard to bear witness to, I know.

June Butler said...

What a terrible mess of a situation. My prayers are for Deenie to be comfortable and free from pain and to have her wish to die at home respected by her proxy.

Kirkepiscatoid said...

Wow, Ken...are we related? Much of this I could just do one word substitutions.

Peace and blessings to you, too, my sibling in Christ...

susankay said...

And another deep problem is our unwillingness to just plain talk about death. Thanks be to God (or Godde or Goddess) that my parents were not afraid of death and talking about it. They and my sister and I literally talked it to death. So it lost any scary power. And then when they were about the business of dying, we were really clear about what should be happening -- for THEM not us.

I think that we need to take far more seriously "mystics" who talk about "dying that we may live" in terms of not just spiffy theological correctness but also in terms of dealing with LIVING in a more appropriate way -- which should include dying in an appropriate way.