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Another important turning I call playing God. Sadly, this afflicts the caregivers who are most devoted – people who are often performing this role in isolation and think it is their responsibility, and theirs alone, to keep the patient safe and alive from day to day. The person you’re taking care of will often reinforce that by saying, “My daughter is the only one I trust.”
That leads to a codependent relationship. Both people need to keep this going because it is the most important thing in life. The problem is, as long as things are going well, and you’re succeeding, your ego is stimulated and you feel like God. And you are probably keeping this person safe and often averting disasters.
When a treatment backfires or the illness comes back, if you’re God, guess who’s fault it is? And then you come down the spiral of guilt and so it’s a no-win situation. Finally, a doctor had to say to me, “You knowwhat, Gail? There is a God, but you ain’t it.” That was one of the best pieces of advice I’ve had.
A seventh turning – and I’m skipping some to be quick – I’d call coming back. I think this is the most important for the caregiver because this is when you reach the center of the labyrinth metaphorically and ask yourself the question, “Is my loved one likely to come back to the independent person he or she once was?” If the answer is, no, probably not, these will continue to escalate. Then, it’s time for you to prepare a different path to come back yourself.
It means you need to reconnect with your old interests, with friends you haven’t seen, that passion that you put on hold, and ask yourself, “Where do you find your transports to joy?” What is it that gave you pleasure and meaning independent of your loved one? What were your lifelines? Was it art? Was it a book you always wanted to write? Was it coaching? Was it a career that you loved? Can you go back in part time and work back to full time?
I had that experience with my husband. At one point the doctor was standing by his bedside and he said, “Gail, I want you to go back to writing. You’re losing yourself. I’m going to ask Clay to give his blessing.”
My husband said, “Yes, of course. Please, go out and cover the 2008 campaign. I’ll be here. Just call me and give me the gossip.” The reason this is classic is that the person who is leaving this world is often as concerned about you, the caregiver, and what will become of you afterwards as anybody else. You’re actually doing them a favor if you begin to cultivate what used to give you joy.
There was another very dramatic turning that I call the long goodbye. That’s the last turning of all. I was introduced to that when my husband’s pulmonologist came to me one day and said, “Your husband has entered the cycle of slow dying.” I said, “What is that? How long does that take?”
He said, “Well, he’s been in the hospital, in and out every couple of weeks for the last few months, and I’ve suctioned out his throat, but then he gets pneumonia again. We shouldn’t continue this.”
I said, “Well, what do we do next?”
He said, “I don’t know. What do you think?”
I said, “Can’t you give us an answer?”
He said, “The next time he gets pneumonia, don’t bring him back to the hospital.”
I said, “Well, where do we go then?”
He said, “I’m sorry. I don’t have a good answer.” Acute care physicians really don’t like to talk about end of life. And if you haven’t had the perspicacity to have a long-term health care insurance plan, as many of us didn’t, since it happened too recently, you really have almost no choice. Either continue to go back around the revolving door to the ER and readmission to hospitals and out and then in less than 30 days back in, which is common.
Or, sign up for hospice. As wonderful as hospice is in the last six months of life, it is limited to people who are only going to live for six months or less, and a doctor has to verify that. Also, all medical treatment has to be suspended.
My husband was in between. We were still going to the theater, we were still going to free concerts at the Philharmonic, he was going out for a walk every day, and seeing friends. In fact, the doctor had said he could live another year and a half or two this way.
Where were we going to go? We were medical refugees. Many more people are entering this phase, which is not provided for by most insurance plans, and certainly not by the government. So, we had to scrounge around and go to the gray market and try to hire people who were mostly immigrant women who might have experience with the particular medical needs a patient had. But that’s extremely costly.
If you go to an agency, the home health aides are not very well trained at all, and if you go to the gray market and get somebody who is from another country and well trained, you’re probably going to pay $20 or $25 an hour. You work up to 24/7 care, it’s $20,000 a month in New York City. Well, nobody can sustain that for any length of time.
So then the alternative is, the working person – in my case, it’s me – would have to leave work and spend all the time caring at home or impoverish ourselves to qualify for Medicaid, and then my husband would probably have had to go to a nursing home. The end of life is really a mysterious and frightening stage of life that we as boomers or older than boomers are going to have to figure out for ourselves before we get there and run into this kind of situation.
There are alternatives. I could have spared my husband and I a lot of problems if I’d known about palliative care, home health teams. There aren’t many but they are beginning to spread around the country. Mount Sinai is a leader in this form of treatment,
Palliative care is for before hospice. Hospice provides for comfort and support for the dying. Palliative care provides comfort and support for living with chronic or serious illness, and that may go on for several years. You don’t have to give up medical treatments, and you don’t have to be confined to a deadline for the end.
The long goodbye, in our case, did last for a year and a half, and we had a wonderful palliative care team with a geriatrician leading it who was on call to me at any time, a visiting nurse who made routine calls two or three times a week to check on a feeding tube and suctioning in the throat, and so on. I was able to manage it with working and some backup support.
Clay was adamantly opposed to signing up for that six-month deadline. I want you to explore that and I hope this conference will give you confidence in providing this role, creating this circle of care when you need it as a caregiver, and freeing yourself from guilt. When the time comes to come back and prepare for your future and for caring for your own health after the demands that have been placed on you by caregiving.
Because this passage may be the most important one in your life – how you usher your mom or dad, your spouse, or a sibling has so much impact on how you think about yourself. Am I a good person? Did I do everything I could? Did I let my sibling take it on by him or herself? Did I hold on too long? Did I let go too soon? Or did I share precious moments of presence with my loved one right up to the end?
I wish you all good luck and a wonderful rest of your conference.
