So, we’ve had a bit of a scare the last few days. Friday night, Dad started complaining of constipation – despite having had a bowel movement just the previous morning. By 5 a.m. Saturday, he was completely miserable, not sure which he wanted to do more: poop or vomit. We went to his primary-care doc’s Saturday walk-in clinic – they prodded, he yelped, and off to Cape Cod Hospital’s ER we went.
The first thought was that Dad had gallstones. Then the tests started coming back. The good news: the gallbladder was fine. The bad news: he had a “mass” or an “obstruction” in his colon. Faster than you can spell “admission” he was checked into a room with one of the best views of Hyaniss’s Lewis Bay you’ve ever seen. The news from yesterday’s colonoscopy is that the problem is diverticulitis, not a tumor.
Obviously, there is a relief that colon cancer appears to be ruled out (at least until the next series of tests). But diverticulitis raises its own series of issues, and a question: is this less-than-drastic diagnosis really better than one that simply adds to the slow, chipping-away that’s been happening to Dad’s quality of life over the last several years?
This situation isn’t really a surprise. Dad had some digestive problems back in March, and a stool test came back positive for blood. Both his primary-care doctor and gastroenterologist urged a colonoscopy, but Dad refused, and, honestly, I was quietly relieved. There were some health risks for him with the test – the prep solution works by pulling all the fluid out of your organs to flush out your bowels, and that can be very hard on compromised kidneys. Plus, Medicare won’t pay for hospitalization, or even an aide, to help with the prep. The guy has trouble now just getting from the sofa to the bathroom without tipping over, so I had horrible visions of some extremely messy falls after having to make that trip multiple times over a period of hours, getting weaker all the while.
Of course, if he’d had that colonoscopy, the doctors might have caught the diverticulosis that is the root cause of the diverticulitis infection that now has him laid up in the hospital. But treating diverticulosis means becoming especially careful with your diet, which is asking a lot of an 89-year-old whose steak, bacon and Scotch are among the very few pleasures his life has conspired to allow him at this point. He simply wouldn’t have done it – in his almost 90 years, he’s probably eaten 23 green beans and three or four peas, so becoming a fiber-rich herbivore would mean a complete life change. And I’m not about to turn into the diet police; since I forced the process that led to him losing his license, I’ve made the decision not to push back on what others might think to be ill-considered choices if they don’t carry a risk of hurting someone else.
At this point, the doctors are still trying to figure out why the infection is persisting. Yet another National Geographic-like exploration of his colon may be in store tomorrow. There may be yet-to-be-found causes that could be much worse. But already, I’m beginning to wonder about how he recovers from this. His oxygen levels are dropping precipitously when the nurses try to get him walking, so his leg muscles could well be losing what little strength they have from lack of use. I’m sure there will be a rehab stay once the infection is controlled, but what will his life be after that? My house just won’t accommodate a wheelchair, so there may be a real question regarding his ability to return home.
Which brings me back to the diagnosis. Is the current guesstimate of diverticulitis really better news than a fast-moving cancer that might have taken him quickly, but with still enough time to say his good-byes? Instead, rehab could just be a transition to a nursing home, where, yes, he might live longer than with cancer, but to what end. So, as I recount this information to others, and they respond, “Well, thank God it’s not cancer,” I smile and nod, but inside, I’m beginning to wonder, “Really?”.
October 25, 2011 at 9:38 pm10
My Dad is 88, and I finally had to accept that he would live his own life (still independent) and make his own decisions -the best I could do was be there to pick up the pieces. He is going to die, maybe not now, but eventually. Who am I to judge whether doing all the “right” things, which might extend his life really is the best option for him.
Sounds tough.
October 26, 2011 at 9:38 am10
I was pretty sure the “Thank God it’s not cancer” title was a bit ironic, before I read the piece. I hear ya …
Before watching it happen to a loved one, who knew that the amazing medical advances that allow our elders to live on and on and on, were so downright abusive? It’s as if we’re keeping them alive to torment them (and ourselves).
November 1, 2011 at 9:38 pm11
But we don’t have to choose the amazing medical advances. Living and dying (inevitably) are all about choices, but the really big choice is all about accepting end of life.
April 24, 2012 at 9:38 am04
No one really wants to accept the end of life, and once dementia sets in, the ability to make that distinction can become very blurred. I am caretaker for my mom, who is unable to take care of herself any more and has advancing dementia, but yet is still (for now) mentally sound enough to still make these decisions for herself. She is very stubborn and still has an extremely strong will to live even though her life consists mainly of drifting in and out of wakefulness and watching TV in her recliner. Still, she wants all medical procedures to prolong her life, as long as she isn’t brain dead. However, when she went through radiation and chemo for breast cancer at age 62, I was left to clean up the diarrhea, tend to her toenails that succumbed to opportunistic fungal infections, cart her to the ER or call the ambulance for her many bouts of sepsis, treat her breast abscess at home for weeks, and treat radiation burns at home. All this on top of the heap of everyday problems in her daily life that have resulted from years of diabetes and severe cardiovascular disease. She is now 65 and cancer free, but for how long? Next time will she selfishly choose to forge ahead with cancer treatment, or will she submit to hospice care? Who am I to judge her choice as long as she is still capable to make it?
October 26, 2011 at 9:38 am10
Hi,
First time commenting – like a lot of other
people I found your blog via “The New Old Age” blog in the NYT.
FWIW, I find your posts to be well written, thoughtful and
instructive. I wonder whether I could manage even 1/2 of
your caretaking duties with my own father should we come to
be in that situation. I realize that no matter how much
you try to prepare for the future sometimes you just have
to try and do what needs to be done when the time comes.
October 26, 2011 at 9:38 pm10
the gradual decline goes on for so long that when you arrive at the point where it seems there is so little pleasure/ability remaining it seems almost a shock. your instinct to decline painful/invasive/risky testing is a good one – the question of what are the most likely findings of test X, and what would the implications/treatment of each of those findings be? is a good guide here. If he is ready to decline all invasive tests/procedures, maybe it is time for hospice care. this does not mean he is about to die (tho he may be close to it) but that the focus is on comfort and quality of life. he can have hospice/palliative care under Medicare, and having some steak or a good stiff drink now and again is encouraged and part of the plan! He may be able to come home w/ hosp bed, commode, etc. – bed to chair status. He may be at a point where he doesnt want to go OUT of the house any more anyway. the primary MD has to write the order to transfer to a hospice program BUT you can ask the hospice program(s) in the area to describe what they might be able to offer your dad, either at home or as a supplement to care in a nursing home.
i’m an RN with 20+ yrs of caring for elders in community in Massachusetts, so I know the path. Elder Services of Cape Cod and the Islands can give you info on hospice programs in your area if hospital SW isnt helpful. Take it one day at a time, you are doing good work.
October 26, 2011 at 9:38 pm10
It is amazing how the right things find there way into your life right when you need them. This blog has been helpful to me. My mom had surgery that didn’t go well, and has left her with a vertibra cutting into her spinal cord and she is slowly becoming a quadrepaligic(sp)?. We just found out last week via cat scan that there is a mass in her colon. They say is is most likely cancer. They want her to do a colonscopy. She is refusing any tests or treatment. She really doesnt care if it is cancer or how long they think she has. She cares that to test it or treat it will cause her more pain and suffering. I am relieved. We all have an end game. We want to minimize the suffering.
Annie
October 27, 2011 at 9:38 pm10
Chuck, where is the compass we need that guides us through stuff like this? It’s a strange world where a fast-moving cancer starts to seem like a pretty decent option. Wishing you strength.
October 29, 2011 at 9:38 pm10
My mom who’s 83, has been on and off hospice twice starting a little over a year ago. It was really wonderful. I felt so supported. Great people, a social worker I could talk to also. Now her Alzheimers is progressing rapidly and this weekend she’s made another visit to my brother’s about two hours away. Last time she visited them, early spring, she came home with pneumonia and a few weeks later it was round two of hospice. Her new doctor is again ordering tests, whenever she has a symptom. We were kind of done with that before, but even though I rehearse, it’s hard for me to just say no, no more. In my mind, she’s on palliative care, but this particular hospital network doesn’t have a formal palliative care department so the doctors don’t know how to carry that out. She’s not going for any treatment so why does he need to know what’s going on. He orders chest xrays. This week she’s anemic. She doesn’t have any symptoms. Why put her on iron which could very likely constipate her? I agree with clairesmum, it may be time for your dad to go on hospice. They took her off medications that weren’t strictly for comfort. Anything with long term results, discontinued. Off hospice, back on them. Ridiculous. I remember those times, like you’re going through, when there were so many decisions to make, every day. It was relentless. It’s exhausting. I’m sorry.
December 11, 2011 at 9:38 am12
All you can do is all you can do. And that is just what you have been doing ever since he moved in with you. It sounds like there is truly no way he can come home with you. Yes, it will be hard to tell him, but you need to do it and he will adjust and accept, because he has no choice. I think that, really, you have no choice either. It’s a hard thing, but the time has come.