Death Rattle

I am sitting here listening to my father’s death rattle. First, there is the puff of the oxygen concentrator machine accompanied by the gurgling of the attached humidifier, then, like an echo, the rattle of his breath.

Things are progressing, or rather degressing, very rapidly. He started having breathing/panic attacks on Thursday, and by Saturday, he was experiencing them every couple of hours. I thought everything was more or less under control, but Saturday evening, he fell. He wasn’t hurt. Just scared. He kept demanding a doctor. I sat with him and tried to soothe him until hospice came. The nurse and I got him on the bed, but he was agitated, sweating, twitching, having pbedroblems breathing, and experiencing what seemed to be hallucinations, so she suggested he take morphine to open the bronchial tubes and haloperidol for the agitation.

Although she wouldn’t say how long he had left, I recognized the “end signs.” I stayed up with him most of the night, and he seemed to be sleeping peacefully, but this morning, he got agitated again. Tried to get out of bed, couldn’t cough up the secretions (as they so delicately call his prodigious amounts of mucus. I’ll spare you the details of my holding him while he drooled those “secretions” all over me). I finally got him partly settled, half on and half off the bed — he’s too heavy for me to lift by myself. Luckily, right about that time, the hospice nurse came to check on him, and she agreed that he is displaying the end signs, especially terminal restlessness.

I won’t bore you with the story of my (his) day, but the upshot is he is now in a hospital bed with rails (so I don’t have to worry about his falling). He’s mostly comatose, and although he doesn’t have mottling of the skin to show that his organs are shutting down, it does seem he has little time left. The nurse says her best guess is 48 hours. He can barely swallow, so I give him his few drugs with an oral syringe. He stopped eating and drinking yesterday. (When Jeff was at this point, he still had five days left, but dad changes by the minute, so I sincerely doubt he will take that long. Since he’s made up his mind to die — in fact, he asked me to help him die, which of course I cannot do — he will proceed posthaste as he always does when his course is set.)

I am with him almost constantly, monitoring his distress, and keeping him as comfortable as possible. I am hoping he doesn’t wake up — the realization that he is in a hospital bed will be too demoralizing for him.

Still, at ninety-seven, he’s led a very long and charmed life, a lot longer, happier, and healthier than most people. And his end won’t be prolonged. Something to be grateful for on this eve of my orphanhood.

***

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.

 

 

Taking Care of an Aged Parent

Taking care of an aged parent is difficult in the best of times — to him (or her) you are the perennial child and they feel it is their privilege to boss you around. They resent your taking charge when necessary. And yet they demand that you baby them, not just physically but emotionally.

My father isn’t much into emotions (unlike me — I deal with a whole spectrum of emotions every day) but lately he is given to panic attacks when things go wrong, such as when the oxygen tank stopped working. (He does fine without oxygen for hours at a time, so his belief that he was going to die was simply the result of his panicking.)

Today, he had a nosebleed, and he demanded that I get a doctor here to cauterize the wound. He was sure the blood was coming from his lungs and he feared he was going to bleed to death. I explained that the continued use of oxygen through a nasal cannula could cause nosebleeds and told him what to do, but of course, I was “just” his daughter who couldn’t possibly understand. Since he wasn’t used to nosebleeds, the continued bleeding scared him. Even after I called hospice and got the same assurance, that such bleeding was normal with constant oxygen use, he continued to believe that the nosebleed was a cause for major alarm. He said he seldom had nosebleeds, and that he had always clotted well. I explained that whatever had been the case in the past was no longer the case, especially since he’s taking baby aspirin to thin his blood.

I kept wanting to say, “What part of ninety-seven don’t you understand?” But I’m kinder than that, and simply did what I could for him until the arrival of the nurse I had requested.

Although I was hesitant about this particular hospice service (I’d had bad experiences with them, and the first month was rocky until people and supplies became part of the routine), they’ve been very understanding, even allow me to vent my frustration without looking askance at me for being a bad daughter.

I wonder sometimes if this would be easier if he weren’t so terrified of death. He believes in God and prays interminably, but I guess even though he fully believes his wife is waiting for him in heaven, it doesn’t mitigate the fear. In fact, he doesn’t seem to believe that he too will die. He hates being on hospice because he says it makes him feel as if we think he is dying, even though dying is a prerequisite of hospice care. He doesn’t seem to understand the palliative nature of hospice, nor does he seem to understand that they don’t provide round the clock nurses. (All this inability to understand makes him sound unsound, but the truth is, he still is sharp.)

He does fine when he can manage every aspect of his life, going about his rigidly controlled routine, letting nothing unpleasant or disruptive into his daily sphere, but when there is an emergency, his fear bursts out of him like some grotesque alien.

I am trying to learn from this. I am trying to let things happen, to let go of my control of things, to be resilient, to acknowledge the emotions that flit through my days. To not be so consumed by fear that I let life pass me by.

Of course, at the end of my life, I could be just like him — fiercely hanging on to every breath I take — so I try to understand. And after all, it is still his life to do with as he can.

***

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.

Held Hostage by Life

My father calls hospice “hostage” and it certainly felt that way to me today. For an organization that purports to be there for the dying and the families of the dying, they are giving me a hard time. Remember, this is the same organization that kicked me out of their grief group for not grieving enough, so for me to expect consideration is a bit foolish. Still, after numerous phone calls to changecoordinate calendars, we had set up a visitation schedule for the nurse’s aid to come bathe and shave my father that will suit all of us (Wednesday and Saturday mornings), and today, just as I was walking out the door to go to my dance class, the woman called and said she was on her way. Huh? The last I looked, Tuesday came after Monday. Wednesday is still scheduled for tomorrow.

I told the woman about the situation here, about all the calls we made to set up a schedule, and that I wanted her to come on Wednesday as planned. She said it was not possible, then added, “You’ll have to wait until someone dies before you can get the schedule you want.” That comment sure took me aback. Aren’t hospice workers supposed to be tactful with the people they deal with? And aren’t they supposed to make an effort to help us in a way we need to be helped? Apparently not. (When I expressed my feeling about her tactless remark, she put the onus on me, saying she understood that caregivers were under stress. I didn’t appreciate her patronizing attitude, either, especially since my only stress came from her tactlessness and her refusal to follow the schedule we’d set up.)

The person who came to sign us up told us that Medicare gives them $5,000 a month to spend on each hospice patient. Even assuming astronomical costs for administration and a fifteen-minute visit from a nurse once a week and a half-hour visit twice a week from an aid, and adding in the cost of my father’s minimal drugs, there is still most of the money available to hire people to come when we need them. But no, they can’t do that. And so I am being held hostage by their inflexibility and tactlessness.

Then there is the matter of my car. Three months ago, I spent a small fortune to get the thing fixed, and apparently I got sandwiched between a crook and an absentee owner — the felonious employee pocketed the money while the owner was off taking care of family business. The crook did minimal work, just enough to get the vehicle moving, so now my car is again out of service, and the owner of the business is scurrying around trying to fix his business and my car at the same time.

Yep, felt like a hostage today, trapped by life in situations I neither created nor abetted.

The best things about today were my dance classes, of course. They are the best thing about every day. It’s possible that I am taking all this hostageness too seriously, so I’m going to forget it now that it’s out of my system. Instead I will bask in the over-heated glow of a body that did what it was supposed to do — stretch and bend and move and dance.

***

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.

Killing My Father

Some days are just more than I can handle. Well, not the whole day. I took dance classes today, and that was as wonderful as always. Everything was even fine when I got back to the house. My father was up, seemed content, so I told him I’d be gone all day next Thursday and Friday, and into the evening on Friday. He was okay with that, but when I asked if he would be okay if I went to the Sierra group walk for a while tonight, he got upset with me for leaving him alone. Then I noticed he was gasping for breath.

I went to check his oxygen concentrator machine, and it didn’t seem to be working — the regulator ball was at zero. My father came and pushed me away from the machine (he still has a lot of strength for a 97-year-old man). He was all in a panic, pushing buttons, turning the machine off and on, twisting the regulator knob, and he refused to go sit down so I could check out the machine. Finally, I steered him away from the machine, told him he was panicking from loss of oxygen, and rather sternly told him to just lie still while I got the problem taken care of.

wind“I don’t want to die,” he kept screaming, and at one point, “you’re killing me.” (Not sure why he said that. Maybe because I wasn’t moving fast enough to suit him. The truth is, he is fine without oxygen for several hours. He simply panicked.)

Meantime, I called hospice, who called the oxygen people. When I told my father the oxygen people were going to call me back, he got mad and said I was supposed to call “hostage.” I explained I did call hospice, and they were the ones who called the oxygen supplier. I finally got him calmed down enough so I could go get the temporary tank from another room and set it up for him. Now we’re waiting for a replacement tank (or maybe just new tubing — I didn’t see any kinks, but that doesn’t mean there aren’t any).

Considering his panic, I asked if he was still willing to be left alone during those two days next week. I said I could ask my sister to come back, and he refused to let me ask her, just said to leave the emergency tank set up. It’s not possible to leave the tank set up — such a tank holds only four hours of oxygen, and if it was set up, it would be out of oxygen by the time he needed it. He said he was still able to remember fundamentals such as how to work a machine once it was explained to him, and I didn’t say anything. Under normal circumstances, it could be true, but when he is panicked, thinking he is going to die from lack of oxygen, I have my doubts.

But it’s still his choice . . . for now.

(An hour later: The machine is fine — it turned out the electric socket is dead. My father is fine too. It turned out I did not kill him.)

***

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.

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.

***

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.

***

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.

***

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.

***

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.

Excerpt From “Grief: The Great Yearning” — Day 3

So many people have told me lately that I should write a book about grief, that I realized somehow I’m not getting the point across — I did write a book about grief, and it is now published.

I never actually set out to write a book, never planned to make any of my writing public (except for the blog posts, of course), but I was so lost, so lonely, so sick with grief and bewildered by all I was experiencing, that the only way I could try to make sense of it all was to put my feelings into words. Whether I was writing letters to my deceased life mate/soul mate or simply pouring out my feelings in a journal, it helped me feel close to him, as if, once again, I was talking things over with him. The only problem was, I only heard my side of the story.  He never told me how he felt about his dying and our separation. Did he feel as broken as I did? Did he feel amputated? Or was he simply glad to be shucked of his body, and perhaps even of me?

People always mention how my pain shines through my words, yet at the beginning, I was in such shock, I didn’t feel much. Two years later, I still miss him, still hate that he’s dead, though I don’t have the physical trauma that I did, and I have regained some of my energy. It truly shocked me how exhausting grief is, but then, most of what I experienced shocked me. I never expected to feel this sort of grief. Never knew it was possible.

Excerpt from Grief: The Great Yearning

Day 3, Grief Journal

This was a hard day, though I don’t suppose any of them will be easy for a while. It’s amazing how little energy I have. I can’t do much at all. Today I rewound some of Jeff’s video tapes, the ones we watched toward the end. Perhaps tomorrow I will find the strength to put them away.

The hospice nurse came and got rid of the drugs. (Dumped them in a plastic bag of kitty litter, which turned them into a solidified mess, and took them with her.) The medical supply people are supposed to come tomorrow to pick up the oxygen tank. It’s like I’m rewinding his life. I wish I could rewind it back to the good times. We did have good times. I know we did. But everything got so muddled at the end. All we were doing was struggling to survive.

I can’t believe there was ever a time I wished the struggle were over so I could start my new life. How could I not have known I’d feel such pain? I heard today that losing a long-time mate was like an amputation, and that’s exactly what this feels like.

Good, bad, indifferent—it was all the same. We were together. We took care of each other. And now he’s been amputated from me and my life.

I got furious on his account today. It’s so unfair that he had such ill health, that his life ended too soon and too terribly. It seems unreal, now, that we took for granted he would die young. Shouldn’t we have railed against it more? But he was so disciplined, focusing his energies on trying to prolong his life and be productive.

I don’t know which is worse, the times I miss him dreadfully or the times I concentrate on doing something and he drifts from my thoughts. It seems such a betrayal. If he only exists in my memory and I don’t think about him, it’s as if he’s dying again. And once was hard enough. It takes my breath away when I realize I will never talk to him again. Well, I will talk to him, and I do, but we will never converse. I will never hear his voice.

I thought I was through telling people our sad little tale, but I’ve remembered a few others I have to notify about his being dead. I hope I don’t start crying when I talk to them. I’m tired of crying, tired of feeling sick to my stomach, tired of the hole in my chest. How do people endure such grief for months on end? I truly hate that he’s gone. Hate it!!

***

Click here to find out more about Grief: The Great Yearning