Maria and I both went to the hospital today to visit our friend, who was rushed there in an ambulance Sunday.
I am not a grief thief; this isn’t my drama; I am not the one who is sick and in the hospital.
It was an arduous and exhausting visit. It was draining; I collapsed when I got home and slept for four hours.
Sometimes it’s hard to watch a life come apart. And harder to try to take responsibility for any part of someone else’s life.
I went to the hospital today to get some business done, to tend to the details of a brutally interrupted life.
I sparred with a hospital case manager about hospice. I talked about mail, heat, insurance, door locks, cleaning, neighbors, a neglected dog, hospice care, and the options available to a critically ill person.
There are significant issues to worry about when someone is critically ill, and there are small ones. Who will feed and groom the dog? Who will make sure the pipes don’t freeze, and the sidewalk gets shoveled.
It’s always essential to remember that people who are very ill need to be free to make their own decisions, whether we like them or not.
My friend seemed confused. She kept saying her family was coming, but they are not coming. No one is coming. We realized she is not clear in her mind.
I’m a big boy and have seen a lot in my life, but the image of my friend alone and helpless for days on end was piercing.
So she is very alone, and we must help her insofar as we can.
It is a complicated thing for Maria and me, in that our friendship with our friend was problematic, and we had to take a break from it.
But it is also simple. We need to help.
Our goal is to help our friend get organized for this challenging and complex chapter in her life. And to think of things that she can’t do or won’t do that need to be done.
Her closest friend came up to see her today and to meet with the case manager and us. She wants to be involved, and she has had experience working with hospitals and nursing homes, as have I.
This was good news. We make a good team, and I was happy to meet with her. I suggested contacting hospice. I got nowhere.
Hospice does not kill people or support their dying; it makes people comfortable in the environment they choose to be. Hospice is not about dying, it’s about living comfortably and if necessary, dying well and with as little pain as possible.
Patients don’t always understand the track they are on when they enter the American health care system.
The system is built on medicine, tests, surgeries, and procedures. It doesn’t know when to stop; in most cases, decisions are shaped by the threat of lawsuits. Hospitals that don’t do everything are often sued.
I don’t know the details of my friend’s illness; I have no idea if she is dying or not. I do know she is seriously ill, and this is the time to consider decisions.
In America, it takes an average of six years for sick people to die (Atul Gawande, Being Mortal And What Matters In The End) in our expensive and corporatized health care system.
Most people incur staggering costs, which their beleaguered families have to struggle to pay. Our country is not humane when it comes to sickness and death.
So that’s that for now. I did my job. It is her life, her illness. I respect that.
On the blog, I quoted a hospice nurse who wrote to me a few days ago challenging my decision to get my friend to the hospital on Sunday. I don’t need to re-argue that, but she had one very valid point.
Once you sign up for continued treatment, you lose the right to get sick and die in your own home. Hospice suspends treatment and works to make people comfortable. It’s a difficult choice.
Most insurance covers hospice; few will pay for all of the costs of the medications she will be receiving and the tests and procedures she will undergo.
The hospital case manager didn’t really even want to talk about it.
Too soon, she said, lots of tests to consider. Never too soon, I thought, but I shut up. I have authority issues as it is, and I often have to check myself.
The friend who came up to help is a person of great character and loyalty. I felt comfortable talking to her, and so relieved she is involved.
I agreed to be a proxy for our friend, as she did, so we will be able to talk to the doctors and staff and support and back each other up. We might have some hard decisions to make.
I realize now that I was frightened on Sunday. I was scared. I was learning what it is like to hold someone else’s life in my hands. It felt like I was playing God, and I can’t think of anything scarier than that.
Tomorrow, I’ll see that the house is secure and cleaned, and the heat set correctly (it’s still wintering up here), and the mail stopped. The dog leaves on Friday. I will return to my life. That’s my plan, and we all know the joke about God and plans.
That’s all I can do. That’s all I should do.
I have some urgent needs to tend to at the Mansion, and Bishop Maginn High School, which needs just about everything.
I am not looking to be Mother Teresa; I love the work I am doing and will not put myself in a position to burn out. I am no hero.
I follow my creed in all good works: I do the best I can for as long as I can, and then I move on.
(Photo above, Maria in her studio.)
When it was my mother I felt the same. Terrified, confused, what is enough, what is too much, who decides. Did I make the right choices.
Thank you for all the times you mention hospice and provide accurate information about it on your blog. Hospice is still misunderstood and underutilized in this country.
Jon, no-one has the right to criticise you for your choices and actions. I realize that this is one of the things that keeps your interactive blog vibrant, is the differing of opinions to you expressing your thoughts and actions and I think you do a great job handling all that you do. But in this case, criticism isn’t helpful. You are trying to take care of the practical aspect of your friend’s life. She was in an emergency situation. You handled it. She needed to be in hospital. There is her dog to deal with, you are handling that end of things. Her home needs to be secured against the winter weather which I experience as well, here in Southern Ontario, similar to yours. There are practical things that need attending to and you are doing this. Growing old is a very sobering experience. I volunteer with an organization which supports seniors living alone, being a caregiver for another. For the past fifteen years the reality of how we grow old is placed before me every Monday morning at my volunteer job. First of all, it takes money to grow old and afford ourselves a life somewhat in keeping with what we’ve been used to experiencing in our home life. It won’t be the same but growing old is costly if this is what you hope to see happen. Otherwise, we’re at the mercy of our government facilities. I know controversy is good for your blog and it’s good to hear others opinions but again, no-one has a right to criticize you in what you are doing for your friend, albeit one you’ve had to take a break from for awhile. You and Maria have stepped up to the plate now and you are both dealing with a reality most of us hope not to face yet if we live long enough, we will. I’d say your friend is very fortunate to have two or three such caring people in her life right now.
Sandy Small Proudfoot, Ontario, Canada
Here in Virginia we have a form called Five Wishes that we can fill out while still in our rational mind.
On the form we can indicate what we wish to have done and/or not done when we are no longer able to make good decisions for ourselves. The form has to have the signatures and addresses of 2 witnesses to your signature. It does not have to be notarized to be legal. I have done this hoping when that time arrives, it will save my children from having to make any life supporting or ending decisions. The form was provided to us by an RN representing the Hospice in this area..