Category: Family and friends

Posts about family and friends.

H is for Hospice

the Tall Girl # # #

When Grandma was diagnosed with terminal lung cancer 2 months ago, I urged Mom to learn about hospice. Everything I’d read was positive, and having been through a lot of scary drama during the last few days of my grandfather’s life, I strongly felt that this time we needed to be smart, be prepared, and take steps early on to ensure that the final days pass as smoothly and peacefully as possible.

Unfortunately, denial is pretty powerful — as are misinformation and fear. And so when Mom asked Grandma’s primary care doctor about hospice, she came away from the conversation frightened, with a skewed view of the facts and a very negative impression of what hospice does. She agreed to use home health services instead, despite the fact that they cared for my grandfather and were unable to make him comfortable in his final days.

Thankfully, my aunt (Mom’s sister-in-law) took over last week and did some research herself, calling the nearest hospice agency and discussing the situation with them. Based on that conversation, she scheduled a meeting for us to learn more about what hospice has to offer.

We spoke with the hospice rep for nearly 2 hours on Wednesday. It was emotionally grueling; Mom is extremely invested in Grandma’s care (she’s moved in with her and cared for her almost constantly the past 3 weeks) and isn’t ready to admit that Grandma’s condition is only going to deteriorate more as the days pass. The rest of us — me, Dad, Mom’s brother and his wife — all came away from the meeting in favor of switching to hospice now, before Grandma gets any worse; hospice personnel are cancer experts, and they’re most capable of guiding us through the minefield we have to navigate. But Mom has the final say, and even after 2 hours of discussion, Mom wasn’t ready to say yes.

Mom and I talked more yesterday and again today, going over the same details. No, they won’t give her morphine until she needs it. Yes, Grandma can still get treatment for anything other than the cancer. Yes, they’ll give her antibiotics if she needs them. Yes, you can call 911 if she has a heart attack while she’s still at home. No, they won’t take her to the hospice facility until it’s necessary. Yes, they’ll move her to the facility if she can’t get out of bed anymore. And on and on.

Mom said she needed to talk with a priest. I explained to her that she didn’t need permission from the church, that we aren’t required to keep someone alive with a machine (in this case, a ventilator) when there’s no chance of recovery.

She wanted to hear that from someone in authority.

But this afternoon, after meeting with a priest, Mom gave the order to Grandma’s doctor: we want to switch her to hospice care.

It was pretty tumultuous getting to this point, although I can understand Mom’s point of view: once she signs the papers, it’s real. No more false hope. No happy ending. But delaying just means a greater chance of the worst possible ending, of Grandma’s lung collapsing while she’s still in her home. And none of us want that.

A peaceful ending is the best any of us can expect. Sometimes, we just have to broaden our definition of peaceful.

Breathe

the Tall Girl # # #

My grandmother went to the doctor yesterday. As a precaution — probably at Mom’s urging — he gave her a prescription for oxygen. I went over there last night to find one of the big metal tanks lurking in the corner of the room.

My grandfather was on oxygen for several years at the end of his life. When he was at home, he had a machine that would distill the oxygen from water. But he had a collection of the tanks too, big ones and small ones, to use on the occasions he went out.

I honestly thought that, after he died, I’d never have to see one of those tanks again.

I can vividly remember, the day after Hurricane Katrina had passed, that he was on his last tank of oxygen. Dad and I loaded the empties into the trunk and set out in search of replacements.

We were in Meridian, Mississippi — a place where many of Dad’s relatives live, and a city that, despite being over 200 miles from the coast, still suffered a fair amount of damage from Katrina. The city was like a ghost town: hardly any cars on the street and no businesses open. Electricity was out almost everywhere, a result of downed trees and other damage throughout the area. Not knowing what else to do, we went to one of the hospitals for help.

I can’t remember how long we waited before anyone other than the desk clerk spoke to us about the problem; at least 30 minutes, I suspect. The nurse told us she’d see if they had any spare tanks they could swap for ours. I kept thinking, what will we do if they can’t help? Although I knew the answer; we’d have to bring him in and admit him. The hospital, at least, had emergency power, so they could generate oxygen.

After another 20 or 30 minutes, she came back with news: they had no tanks to spare. I wanted to cry. I think this was the point when Dad explained to the nurse what our alternatives were, and that she really did NOT want my fussy, demanding grandfather in their hospital. She said they would try to find an open medical store for us. Keep waiting.

Finally, she came back again. Their chaplain had driven the streets and found us a medical supply store that was open. She gave us directions and we headed back out.

I have never been happier to see an open store. They had no power, but they were doing business anyway. I loved these people.

They swapped our empty tanks for full ones, took my grandfather’s insurance information down, and helped us put the tanks in the car: enough nice, full tanks to get us through another day or two, hopefully until power was restored.

We got back to the hotel, tired but proud and relieved, and carried six big tanks down the hall to my grandfather’s room.

We were met with complaints that he wanted a hot meal: something he didn’t need and we couldn’t get. “Complaints” is actually a bit of an understatement. He insisted that we call the hospital to find out if they would give him a hot meal. We refused. We tried to explain to him what the situation was like out there: no power, emergency power only in the hospital. It took a five-minute argument to convince him to let it go. It was all I could do not to tell him to his face how utterly selfish I thought he was.

The next day, when power was restored, we went to the hotel’s restaurant to pick up dinner and bring it back to the rooms. There were two elderly women also waiting for food. They hadn’t eaten in over 24 hours.

I felt so bad for them, knowing we’d had food to spare — and I wanted to go back and tell my grandfather how lucky he was compared to these women. But I knew it wouldn’t do any good.

Vague News is No News

the Tall Girl # # #

Grandma got the results of her CT scan a few days ago. Basically, it just confirmed what the X-ray already showed: that she’s got a 3-inch mass in the center of one of her lungs. Foolishly, I thought the reason they were doing a second test was to give us new information. Guess not.

Apparently, we won’t know anything more unless Grandma agrees to do a biopsy. Originally, when the doctor asked her if she would consider that, she said no. She seemed a little more willing to consider it after the CT scan, but now she doesn’t even want to go to the lung doctor for an office visit. So a biopsy is probably not going to happen.

I don’t think we need a biopsy to tell us it’s cancer. She’s a lifetime smoker and has a huge lump of something in her lungs; we know it’s cancer. But as my dad said, there are different types of cancer, and some are more aggressive than others. So the biopsy would at least give us better information about what to expect and how soon to expect it.

Right now she’s about the same as she has been for the past few years: easily tired, with shortness of breath if she walks around for more than a couple of minutes. Her doctor said she’s going to get very, very sick and that lung will probably collapse, but we have no idea when to expect things to go all to hell. Will it be next week? Next month? Sooner seems more likely than later, but we just don’t know.

The lack of information is maddening. It’s like being in hurricane season in that respect — you know things are going to get ugly one of these days, but you don’t know when, so that anxiety just hovers in the back of your mind, wearing you down without accomplishing anything.

And that’s another thing I worry about: we are in hurricane season, and coming up on the time when our area is most likely to be threatened. My parents and I are the ones responsible for Grandma most of the time, particularly when a hurricane heads this way. What’s it going to be like if we have to evacuate her? Will she even be well enough to evacuate? What if she’s in a hospice or nursing facility and doesn’t want to be separated from us?

I know we need to plan ahead, but every time I try, it just keeps coming back to the same issue: we don’t have enough information. We only know enough to worry.

Sadness

the Tall Girl # #

No one, not even the doctor, has mentioned the actual word “cancer” to Grandma. He spoke to Mom privately about the ugly truth and only referenced it rather vaguely to Grandma, asking her if she would consider radiation treatment if it turned out that the “spot” on her lungs turned out to be “something worse than pneumonia.” We’ve been debating how much to tell her, because nothing they do will cure it — the mass is way too big to remove and, while radiation will theoretically stop it from growing more, I think that’s all it can do at this point. Mom doesn’t want to upset her with the hard facts and ruin what time she has left — particularly since she’s said before how afraid she is of dying. Sadly, though, she seems to be figuring out that what she has is very, very bad. And there’s nothing we can do to make it better.

It’s funny how all the rational arguments — she’s 92 and she’s had a full life and she can’t live forever, and she smoked all her life so it was inevitable — just seem meaningless when you’ve got to live with the reality of the situation: that she’s a sad, frightened, child-like old woman who doesn’t want to die.

I guess there are no easy comforts when you have to face the end of a life.