In the last few days, I’ve had two conferences with social workers, one at dialysis and one at the nursing home. Both concerned Dad — and brought home the realities we now face.
On Friday the dialysis social worker called. We talked for a long time. They’ve been concerned about Dad –he has lost about 8 pounds in two weeks, and we had to talk about some grim possibilities. Between pain, new teeth, and medicines, he just can’t seem to sit more than a few minutes, at least not comfortably. At meals, he manages a few bites and then has to lie down. He has yet to get to the dining room to eat; that’s simply beyond him. He has spent most of his time lying down, though he works at physical therapy as much as he can manage. He’s motivated; he just has great pain. He has progressed in many functional ways. But still the weight loss has been steady. The nephrologist added an appetite-booster to his meds, and by Sunday he was eating better and seemed to enjoy his food.
I know that with dialysis patients — with end-stage renal failure — there is a time when the dialysis simply no longer really does much more than keep as much fluid as possible from forming, but it can’t really work as efficiently as it once did. Couple that with congestive heart failure, and you’re looking at a point where dialysis no longer completely removes fluid from the lungs, and we reached that in May when Dad had pneumonia for the first time. At some point, the body just starts to shut down.
Fortunately, I don’t think we’re at that point yet. But having the discussion brought home to me that the reality is probably sooner rather than later. I asked the social worker to let the clinic nephrologist know that when his assessment of Dad was that such was the case, then I wanted to know.
I also discussed the probability of using hospice rather than home health services when we bring Dad home from Southwind, and she concurred that such a move would be a good choice.
Later that day, after talking with my sister about this, I was sitting around talking to my friend Charles about it. He’s caring for his mother and they made the switch to hospice already. While the hospice nurse was across the street at their house, he talked to her about it, and she called me to talk about it. Hospice no longer requires that patients be dying for their services to be used; requirements have changed a lot since we used hospice in December 1995 and early January 1996 during the last couple of weeks of my brother Phil’s life. Hospice was wonderful then, and I have no qualms about using it. By Sunday, Kay and I had discussed this and we were in agreement.
I did a lot of thinking over the weekend as a result, sort of running various scenarios through my head.
On Monday morning, I had a call from another social worker, the one at Southwind. We set up a family conference for this afternoon. The family conference was me and the social worker and a few of the staff. We talked about Dad’s progress, its limits given his pain level, and what to do about managing the pain. We also talked about the way Medicare works, and now we’re at the weekly evaluation stage. He can stay up to 100 days, but must show progress. The first thing to do: address the need for stronger pain medication, see if that worked, and see what impact that has on his physical therapy. Also, they told me, his primary physician had added two more medications for boosting Dad’s appetite. The good news: he’s gained a pound. That is a major accomplishment, given the steady weight loss he’s had up to now. A few hours later, I had a phone call from the nurse, who filled me in on the medication changes the doctor made: a stronger pain medication in the form of a patch that is replaced every 72 hours, with a milder medication available as needed. Dietary changes also had been ordered.
Kay and I talked about our attitudes about pain medication at this point in Dad’s life: it is necessary for it to be aggressive. The pain level is unacceptable. Dad, who never has been someone to complain, remains in pain to such an extent that he has greatly diminished quality of life. He has remarked to me often lately that no one should have to live with such pain, that “no one should have to live like this.” I don’t worry about addiction. I am concerned that he be relieved of pain.
He’s had a bedsore from bring reduced to lying down most of the time because of pain. The bedsore is healing well, but it’s been a heads-up too. Bedsores are the bane of patients who remain in bed so much.
I’ve learned a lot about medications, about durable medical equipment, about renovations.
It’s no longer simply keeping track of medicines and doctors’ appointments. No, now I must really be an active participant, an aggressive participant in seeking answers for questions. Being a visible daily presence at Southwind is key. If I’m not there, Kay is. We know the nurses and other staff. We talk to them. We ask questions. We follow up on things. I get phone calls about things I bring up. My observations about Dad’s condition a couple of weeks ago meant that he was taken to the hospital emergency room and that he was hospitalized (though in Lafayette) for infection. Had I not been there, had I not recognized the change in his cognitive functions, I don’t think Dad would still be alive. Just a few hours, just one night — infection would have led to sepsis. He was on the verge of it. Without bombarding him with a cocktail of strong antibiotics, it would have taken over and he wouldn’t be here now.
That’s not being morbid. It’s being realistic. It’s not pretty, and it’s certainly not fun. But it’s what is necessary. It’s just as necessary as having the house renovated so that he can come home.
There’s a line in Hemingway’s The Sun Also Rises where Brett is talking to Jake about how wonderful things would have been if only he hadn’t been wounded in World War I. She goes on about the fairytale that would have been. Jake responds “isn’t it pretty to think so?”
I don’t have the option of wearing rose-colored glasses. Someone has to be pragmatic, realistic, and face the possibilities without flinching.
I manage. I bite my lip. I take a lot of deep breaths. But this is what Dad needs.
And it’s what he has always modeled for me. He’s a deeply emotional man, a loving father, but he’s never been afraid of facing the hard realities. He’s someone who works through difficulties by physically tackling some chore. I find myself doing the same thing. Sure, I shed tears, but then I get up and tackle some project. It helps. I can survive.
It is what he needs. It is what I can do to show my love. Pragmatic, practical — that’s me now.
It’s pretty to think that he’ll live to 104 1/2, as his Aunt Sallie did (she died in 2010). I’d love to have him around to enjoy. In my heart, I don’t think that will be the case.
So I face the probabilities, the realities of our future. He shaped me to be someone who could tough things out, who could think clearly. My brother expected the same thing out of me — when he told me about his cancer (the first one) and I started to cry, he told me to stop, that I couldn’t, that I had to be the strong one. So I learned to toughen up. I cry, but not in front of them. I let go at times, and talk to friends. I find solace in talking to friends who’ve been where I am now (and there are a number of them). Friendship and community support me. Family support me.
That enables me to do my job.
Now I focus on finishing the renovation — on sorting through the boxes, throwing more stuff out, and organizing what’s left. I still have painting to do on cabinets in the main bathroom. I have enough to keep me busy.
Reality may bite, but I bite back.