In the Presence of Death…

When one is dealing with the dying or the very old, one ends up having some strange discussions. The most bizarre conversation came about on Tuesday afternoon. The hospice social worker was here to discuss various matters and to bring us current on the procedures hospice has already taken care of and to let us know what they will doing in the future.

To me, one of the greatest benefits of hospice is that no matter what happens or what you need, there is but a single phone call to make — to hospice. Hospice does the rest. The social worker reminded me of this and said to notify them when my father was gone, and they will call the designated mortuary and arrange for the body to be picked up.

RIPI knew hospice performed that service, of course, but this is where things got weird. “Since this is a private home and not an institution,” the social worker said, “according to the law, the mortuary has up to a week to collect the body.”

“A week?” I all but shrieked. It seemed impossible that a body could be allowed to remain in a private residence for so long. At the very least, it has to be insanitary. “But what do we do about . . . ?” Since my father was sitting right there, I didn’t want to put my concerns into words, but the woman understood I was referring to smells and decomposition.

“There shouldn’t be a problem for a week,” she said. “Just close his door. If you’re worried, you can always pack ice around the limbs. That will help.”

My first thought was relief that we have so many gel-packs stored away. My second thought was a bit of macabre humor: so my father is lying there, ice packs around his slowly decomposing body. And what would I do? Go to dance class, of course.

I truly doubt I’ll have to deal with a body in the house for a week. When my mother died, this same mortuary arrived within three hours, even though they are 121 miles away. But yes, if my father lay here dead for a week, I would continue with my dance classes.

It makes sense, of course. My presence would have no effect on him, he would have no need of my help, and there wouldn’t be much for me to do since another sister is in charge of funeral arrangements. But still, the thought of dancing with a dead body in the house does seem a bit coldhearted, and I’m sure people would be appalled.

And yet . . . when else should one dance? If dancing is life, and life is dancing, then it is in the presence of death that we need dance the most.

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Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, andDaughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+. Like Pat on Facebook.

What Hospice is and What Hospice is Not

With as prevalent as hospice has become, many people still don’t know what it is. It is not a place; it is not round-the-clock nursing services; and especially it is not a way of hastening the end for people with incurable diseases.

In my experience, hospice is a type of expanded nursing service, providing support — medical, emotional, and practical — for patients and their families admitted to the service. (This may or may not be the mission of hospice — it is merely my impression and how I have used the services offered.) Although a large percentage of people on hospice are cancer patients who have less than six months to live, many people are on the service for several years — since hospice is about palliative care rather than curative treatment, many people suffering from incurable diseases are admitted to the service.

Hospice does not provide drugs intended to cure, but they provide medications to help make people comfortable, such as breathing treatments, diuretics, morphine for pain and breathing difficulties. (This drug service pleases me — it saves me the aggravation of having to deal with my father’s drug provider, especially when it comes to the breathing treatment. It’s expensive and they won’t pay for it, so they have to go through Medicare, which takes months. With hospice, I’ll get it within a week.)

cleanHospice is especially good for those who want to die at home, who have no ability or energy to visit their doctors at their offices, or who don’t want to have to deal with hospitals any more. (Often the “curative” care given in a hospital is taxing to a person on the edge of life, particularly when the doctors are trying to treat an untreatable disease, and in many cases, the patients are worse off when they leave than when they entered.) With hospice, patients still are technically under the auspices of a doctor, though most visits are from nurses and health aids. Other services are available with hospice, such as social worker and chaplain, in case either the patient or the family needs to talk. And there is respite care, generally a five-day stay in a hospice care center for the patient, to give the family member who is a caregiver a respite. (Jeff, my life mate/soul mate was admitted to a hospice care center for five days to give me a chance to catch up on my sleep. I didn’t sleep much at all while he was there, so it was a bit of a waste. Even worse, he never came home. He died on the fifth day.)

I am now going through my third experience with hospice, this time with my father. (My mother was first, Jeff second.) Oddly, I am in the strange position of having to reel in the juggernaut of hospice. They are geared up for the end, calling in a priest for an emergency visitation for my father, setting up all sorts of unnecessary services such as multiple visits from nurses (though there is nothing for them to do), offering me counseling services, sending cases of Ensure he will not drink. (Actually, he will drink it, but I won’t let him. He drinks the Ensure Plus, which offers more calories than the regular, and since Ensure is about his only source of nutrition and calories, and since he doesn’t want to drink six regular Ensure a day instead of the four Ensure Plus, I’m still buying the Plus to make sure he doesn’t starve.)

The reason we’re getting too many services too soon might be in the paperwork — in the submission papers, my father’s doctor said he had prostate cancer and had six months to live. Apparently his congestive heart failure and chronic obstructive pulmonary disease aren’t killing my father, but the truth is, neither is his prostate cancer. He’s had it for many years, and the urologist laughed it off, saying to come back when my father’s PSA readings are in the thousands instead of in the teens.

Still, my father has lost a lot of weight (that dang hospital stay!), so he’s a good candidate for hospice. It’s a comfort knowing that hospice is there if I need them. It gives me someone to call in an emergency. Gives my father the sense that someone in authority (rather than just me) is trying to get him to keep up his breathing treatments and to eat a bit. Gives him an alternative to going to the hospital.

25% percent of people admitted to hospice care die within the first four days for the simple reason that doctors themselves aren’t familiar enough with hospice to understand the service and so wait until the patients are too debilitated from “treatment” to benefit from hospice. On the other hand, more than a third of people admitted to hospice live long beyond the date of their expected demise because palliative care emphasizes the quality of whatever life is left.

Quality of life is always a worthwhile goal, even when — especially when — a person is at the end of their time.

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Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, and Daughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+. Like Pat on Facebook.

After This Death, There Will Be No Other

A friend and I talked last night about the themes of our lives, and he mentioned that a theme of my life seems to be taking care of the dying. First there was my mother (though I was not her principle caregiver, I did help when I could). Then there was my life mate/soul mate. And now there is my father. It seems as if I’ve been fighting with death for more years than I care to remember, but this final fight will be ending sometime in the not too distant future. And after his death, there will be no other — no other that I am responsible for, that is, except my own.

heavenMy father signed up for hospice yesterday. (He is strong enough and mentally alert enough that he was able to sign all the papers himself.) It seems like a big step, but the truth is he is no better or worse than he was the day before. Actually, that’s not true — he says he is doing worse, but to my eyes, he is doing better, thriving on the attention of nurses and home health care workers. I haven’t seen him so charming or jocular in years.

Hospice is not just for the actively dying, but also for those who will never get better, so just because he is now on hospice, it doesn’t necessarily mean he is close to death. I’ve talked to people whose parents were on hospice for five and even ten years. Although there is no way of knowing how long a person has, I don’t think my father is in any danger of dying soon. Getting older and tireder, yes. Dying? Not so much. He just doesn’t seem that much worse off than he was six months ago. He eats less than he did, but he drinks more Ensure. (I think he’s the one person in the world who actually likes the stuff.) So the calories add up to about the same.

This latest step is, strangely, more of an adjustment for me than it is for him. Even with my dysfunctional brother gone, we’ll never go back to the quiet days when I first got here to help him. There will be people coming and going, deliveries of drugs and other paraphernalia, reassessments and new schedules. And, of course, there will be visits from siblings who are suddenly frantic at what they think is the imminent death of our father.

I’ve gone through this so many times before, where I thought he was dying, and he proved me wrong, that I’ve learned not to make plans for when he’s gone. So, whatever the rest of the family thinks signing up for hospice means, I’m just taking things as they come.

Still, he is ninety-seven. One day his life will be finished, and so will this particular theme of mine. And then? I’ll just have to wait to find out what my next theme will be.

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Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, and Daughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+. Like Pat on Facebook.

The Next Step — Hospice

My father’s nurse came and discharged him from the nursing service today. It’s not so much that he’s doing well but that they can’t do more for him — they are a temporary service to help recently hospitalized people learn to deal with their infirmities and the various aids necessary to keep them going. My father really doesn’t have any such aids except oxygen, which he’s been using for several years, and a pacemaker he’s had for six years. He wasn’t interested in physical therapy or any other services they offered except the nurse’s assistant who cleaned and groomed him. He is capable of doing it himself, he just doesn’t want to because it tires him. (When he forgets that he’s old and tired, he romps around without his walker or oxygen, sometimes for more than an hour at a time. )

So the next step is hospice. I didn’t know anyone could apply to hospice — I always thought the patient’s doctor had to prescribe it. My father’s doctor has been uncooperative, insisting that my father isn’t dying. Perhaps he isn’t dying, but he’s losing weight, nursedoesn’t want to eat, doesn’t want to do much of anything except sleep and pray. (Personally, I think he’s bored, but it’s almost impossible to get someone interested in doing anything unless they want to.)

My sister went to talk to hospice today, and when she explained the situation, they said our father was a perfect candidate for hospice. Apparently there are other ways of getting on hospice than having your personal physician prescribe the service. The people at hospice said that if his doctor didn’t release him, they would send a doctor to examine him and sign the prescription. Like with everything medical these days, it’s a matter of hurry up and wait, but still, we’ve got the ball rolling. (Do you think I should have added another cliché, or is that enough to get my point across?)

I’m not sure how I feel about this. I want hospice here, of course. I can’t do everything my father needs (I simply do not want to bathe him, though many daughters do that service for their aged paternal parent). Besides, my father cannot continue going to his doctor — the guy makes his patients wait for several hours, and that is too taxing for an old man. My problem is that although this hospice is the one we had for my mother and so my father wants them, I was unimpressed (they and my father kept my mother hopped up and delusional on vicodan even though she had no pain, and they were rather surly when I insisted — rightly — that she be taken off the drug). And these are the same people who kicked me out of their grief support group and threatened to call the police if I returned. I do not have good feelings about them at all.

I’m hoping to talk my sister into staying so she can deal with the hospice people, but if not, well, I’ll worry about that when the time comes.

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Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, and Daughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+. Like Pat on Facebook.