The sentiments expressed in the photo above are central to being able to really help someone who is dying. But the best part is that you find the humanity of this carrying over into your interactions with others and although you may not always make the best choices, it will make a difference.
I have watched family members of a dying patient come into the room, turn on all the lights, change the television to the news to to some obnoxious sitcom they happen to enjoy and sit there rubbing up and down on the patient’s arm saying things (loudly) like, “Dad. Dad. Sue’s here. Wake up dad!” So if you put yourself in the patient’s place, you realize that when you don’t feel good and all you want is quiet and dark, those actions are bothersome. If you were asleep (maybe for the first time in hours), it’s irritating to have someone vigorously rubbing your arm. And the news or the sitcom? I imagine that if I’m dying and facing my own mortality, processing the events of my life and narrowing things down to what really matters in these last moments, the latest school shooting or government squabble or comedy laugh track or prime time murder mystery isn’t going to be the last thing I want to hear. I imagine I’ll be down to the basics: what did I do with my life? Did I do the best I could under the circumstances? I’ll want the quiet to be able to focus. I can’t say I’ve ever had a patient who was still semi-alert ask me to turn on some heavy metal and turn it up, please. Not one.
Have you ever felt bad enough that food sounded disgusting? Appetite disappears rapidly when you start to fade. Nothing sounds tasty. In fact, the mere thought might make you nauseous, right? So when I see family member force-feeding a patient who clearly can’t swallow, I’m a little horrified. I understand not wanting to lose someone you love. However, I’ve been around it long enough now to also recognize that the family member is thinking of herself and her potential loss, not what the patient wants. I know we tend to think the thing to do when soneone doesn’t feel well is to feed them, but when the patient is dying, those same rules don’t apply and even if you don’t know that, you can see it. If the patient can’t swallow or is alert enough to tell you he’s not hungry, then honor his request not to eat. Put yourself in his place. If you were as sick as he is, would you want to eat?
Perhaps it requires a bit of age to be able to recognize the efficacy of putting yourself in someone else’s place, because Lord knows I couldn’t do that for many of my earlier decades, but it’s a good practice. Even if you haven’t ever been in a similar situation, I’ve found that if I can look at it from the angle of what I’d most likely be experiencing under the same circumstances, I’m much more likely to make a good decision. So the next time you find yourself wanting to impose your own desires on someone who’s got a different idea of how things should be, try to look at who you might be based on the history of their life and the decisions you might have made that lead you up to this point, and see if it changes the decision you might make. You’ll be much more likely to do something that makes that person more comfortable in the moment.
I figure this is probably me one day, fighting off death. I hope I have the energy for that.
So here’s the deal: I work in hospice. I’m not sure if those of us who spend years working with the dying just get used to death and think everyone else must feel the same way or if we jump to conclusions that are perhaps inaccurate.
One is when I hear a doctor talk about how he would counsel an elderly patient that his symptoms were not going to improve, he had no quality of life left and he’d had a nice, long life so perhaps it was time to take a stronger medication that would take care of his pain but would also make him groggy. He could then just die peacefully rather than stay wide awake and painful. I understand that from a medical point of view but I also think there’s a lot more going on with an individual than the physical. Being old and uncomfortable doesn’t necessarily mean he’s ready to die. There’s also the emotional and the spiritual to work into that equation and I often think they carry more weight than the physical concerns.
We spend our entire lives encouraging people to never give up; to fight, fight, fight; to believe in miracles; to try something new if the first thing doesn’t work; etc. At what point should that elderly person toss out everything he’s spent his life doing and quit? Why is it unreasonable to assume that someone might want to live a little longer, even if it’s a few days?
And then there’s the family. I’ve also heard things like, “She’s 90 years old. It’s time to let her go.” I can only assume these comments are a result of working with so many frail and suffering people for years and years. I understand that the goal is to make sure the patient is not in pain but what if that person prefers pain to death? And I don’t think family members pay any attention to the person’s age as an indicator of it being time to let them go. Loss is loss, regardless of the age, and it’s hard to let go. I’m pretty sure no one thinks, “Oh right. Ninety-one. Time to go Grandma!” Given a choice, I’ll bet they’d opt for 92 or, better yet, 110 if they could.
Or maybe the issue is me and no one else finds those comments bothersome at all. I haven’t arrived at a point where I think I’ll be okay when my time comes and so I can’t fathom being told it’s time to stop trying to live. I have tons of things I still want to see and do and hear and feel and I can’t imagine not being me any more, not having a consciousness. I realize that if I go to sleep and never wake up, I’ll never know the difference but making a conscious decision to do that is scary. What if I’ve given up and maybe I could’ve had one more conversation with my brother or laughed with a friend or spent a little more time coming to terms with the fact that the gig is up?
Don’t get me wrong. I understand that when you have a terminal disease, you’re going to die and maybe sooner than you’d like. I just don’t understand thinking the family or even the patient should be okay with that simply because it’s logical. The heart’s not always logical.
Hemorrhoids. Horrible word. Not talked about. Embarrassing subject. Who me? Happens to someone else. Pretend it’s anything but that for as long as you can. Any of those sound familiar?
Well, they do to me. Although I’ve since learned that the majority of people develop hemorrhoids at some point in their lives, I managed to make it to 65 before it invaded my every waking hour. It all started about five months ago when I ended up in the hospital overnight with what turned out to be GERD. That’s another Who Knew? moment for me. That I could end up in the ER and subsequently overnight in the hospital because GERD mimics heart attack, was quite a surprise. It took another few weeks of tests to discover that I have no heart problems and a trial (suggested by the heart doctor) of using Mylanta to discover that it did indeed stop the burping and tummy rumbling.
Fast forward to five months later. I’ve now been on a blood pressure pill and a GERD prescription and now I have extra issues: not only has the burping not gone away (although it seems better), but now I have this horrible pressure at the other end that makes me uncomfortable all day, every day. Of course, working in hospice, we have a tendency to “awfulize.” Every day we have a family member comment about how healthy and happy their loved one was just the week before and now they’re dying in hospice. Because of this, we have this tendency to advance our symptoms into terrible things. Have a headache? Glioblastoma. A tickly cough? Must be throat cancer. Back pain? Surely it’s kidney cancer. And so on and so on.
That brings us back to pressure all day every day in an area that most people don’t want to casually discuss with anyone else. Must be colon cancer. I made an appointment with a gastroenterologist, had an endoscopy and colonoscopy and was relieved to find out I have acute gastritis (a diagnosis I don’t mind discussing with fellow workers) and hemorrhoids (a diagnosis I do mind discussing with fellow workers).
Why is it that gastritis can be kept under control with a swallowed medication but hemorrhoids require suppositories? Can’t they come up with something a little more palatable? Truthfully, I hate the remedy almost as much as the problem. In any case, it has taken the suppositories almost a week for me to notice much of a difference so I put my herbal skills to work and created a salve that worked instantaneously and has continued all day. I infused Evening Primrose, Avocado, Safflower and Olive oils with Witch Hazel Bark, Yarrow leaves, Plaintain, Chamomile, Calendula and St. John’s Wort and then added beeswax to get that salve consistency. I applied it topically this morning and it’s still working almost half a day later. You can bet I’ll be adding this product to my web site, Scentsibility. Maybe there are tons of other “closet” hemorrhoidians out there who could benefit.
Hopefully, this will not be a retirement issue but just a diet and lifestyle issue that I can manage. However, I’m not pleased to have made it all the way to 65 and then get slapped with this indignity!
I often hear people ask those of us who aren’t married and have no children, “Who’ll take care of you when you get older?” Interesting question. Yes, it has crossed my mind many times and I used to believe that my brother and/or my friends would take care of me. I ‘ve never been uncomfortable on my own and living by myself is something I treasure. I never have to argue over what television show to watch, clean up after someone else or let him know what time I’ll be home. If I want to waltz around the house naked, there’s no one to point out my flabby parts or use that as the right time to suggest a healthier diet. So it’s not loneliness that concerns me – well not now anyway. I might one day eat those words but right now, I don’t see that as the issue.
But what if I live to a ripe old age, and most of my friends and my brother are gone? I must admit, it is a concern. On the other hand, working in hospice, I see how abysmally family members can treat each other and fight over money and possessions. The patient is more often than not the one who bears the brunt of the disrespect and, sometimes, outright neglect. So, if I were married and had a bunch of children, could I necessarily count on any of them to do the right thing by me? I think not. Many times the children dislike each other and fight over who’s right concerning the patient’s care. The thing is – it’s usually the patient who suffers because the kids aren’t making a decision on what’s best for the patient; they’re deciding based on their own comfort levels. I guess I’m glad I won’t have a child who’s so determined to keep me here that he/she makes hospice staff withhold medications that would make me comfortable so I can be what they would call “alert” even though I’m thrashing around in the bed.
My biggest concern is the in-between stage – the stage where I’m no longer able to live on my own, require constant care but am not hospice appropriate. I hear horrible stories about the care the elderly get in many of the nursing homes. And I can see it clearly. Nursing homes, like most other businesses, have a plethora of employees who are primarily interested in the paycheck and not the job. Many of them have little or no empathy for the elderly people and how could they? They have zero understanding of living with legs that no longer hold them up, or having to take a ton of medications that take care of one thing but bring all kinds of side effects that may make the elderly person seem “slow, ” when, in fact, the brain works just fine. Those are the circumstances that concern me. I’m not sure the outcome of being in that environment has anything to do with whether or not I have children – and children who truly care about my best interests to boot.
So the fact that I don’t have a husband or children doesn’t bother me about growing older and ending up in a nursing home. What concerns me is ending up in a home where the culture is one of “just wheel them into a corner and let them sit all day.” And I’ve seen it. We had a case of a patient who was brought into the hospice to find placement in a different home because the one where he had been living had wheeled him outside ostensibly to “get some sun and fresh air” and left him in the Las Vegas summer sun for the better part of a couple of hours. I worry that I’ll need to go to the bathroom and someone will be irritated that I ring for help too often. I worry that I’ll reach a point where I have to defecate in a diaper and no one will come to change me for hours and hours. I worry that I’ll end up with Stage IV decubitus ulcers because it’s too much trouble to constantly turn me. I worry that I’ll be hungry but someone forgot to take me down to the lunch room to eat. I worry that I’ll be physically broken but mentally alert and people will come in and talk to me like I’m a two-year-old.
Bottom line: it’s the people in the facilities who will be tasked with my day-to-day comfort that worry me.