Anna was almost 92 when I met her and 93 when she died on her own terms.
Yes, Anna was old and getting frail. Yes, she’s been blind for about 7 years now and she uses a walker to get around the memory laden family farm house. It’s still a farm house, the dairy herd lives just out back a bit. It’s not a big herd but it is highly respected in the industry, as is the farm itself. From the outside things could be said to look a bit worn, even shabby in spots. For those with foyers, entering via the Mudroom could be a surprise. Short story, this estate is one big antique filled with antiques, yet to some it’s just a bunch of junk. To the ones whose faith in the first impression is formidable the thought may even enter that ‘here are some folks who don’t know success’. It remains a miracle that I actually did any nursing here when it always felt like I’d walked through a magic closet door into Anna’s world. She and her family were well educated, well traveled, and each was a guta neshoma in their own right, good souls. They also had good bones and strong bodies.
The Medical Battle Begins
What was the precipitator? The stimulus? I was first seeing Anna because she required follow-up care related to a dissolving clot in her left leg. She was doing fine. Vital signs were within normal limits, usually, and she was taking only two medications: an anti-clotting agent and a blood pressure med. Things can happen quite quickly, even if the quickly is a matter of months. I don’t recall the exact sequence of events but I do remember the day that her heart rate was racing around 125 – 151 bpm. At this rate the individual’s breathing gets shallower because the heart is telling the lungs that it needs more air. The body shivers to stay warm and also gets tired because of how much it’s taking just to keep the oxygen flowing. It also increases the risk for a blood clot to form. Now these symptoms could be caused by any number of things, some much more acutely dangerous than others. As the visiting nurse it’s my responsibility to hope for the best and to plan for the worst. It was also my responsibility to call the M.D. and report the anomaly. Thank goodness for those strong, 92 yr old arms because Anna’s veins made drawing blood a breeze. So Anna’s blood was anemic, no clots were detected, and she was prescribed a blood transfusion and an Iron supplement. She didn’t need the usually co-prescribed stool softener because she ate one of the healthiest diets I’ve ever seen. The M.D. also prescribed a Colonoscopy to rule out gastro-intestinal bleeding as a cause of the anemia. The non-invasive test for this bleeding had already come back negative.
Now who wants a colonoscopy?
Actually it’s no big deal. We all have friends who’ve had them. How often, however, do we seriously consider the risks and benefits of even the most commonplace procedures? This family did. They’ve been farming and raising Grade AAA livestock for generations. They lived with the cycle of life more harmoniously than most, and the family, Anna included, did not think the benefit of having a colonoscopy done was worth the risk. Unfortunately, while this discussion was going on, Anna took a small fall. An 8-hr visit in the Emergency Room and she went home – with a vow of “Never Going Back There Again”. These two brief hospitalizations, plus the fuss over the colonoscopy, was taking it’s toll from everyone but mostly from Anna. She was anxious a lot of the time now. Who wouldn’t be? Her heart rate would fluctuate and fibrillate, and her breathing was shallow but it was not from the anemia. The human body has remarkable coping and adaptation abilities. When chronic anemia is present the body adapts and is often asymptomatic, and Anna has been anemic for quite awhile. In order to keep her out of the hospital we needed to find a better way for her to manage the anxiety, keep heart rate lower and more stable, and her breathing slower and deeper. With Anna’s approval, I taught her how to meditate: simply, she started to relax and notice her breathing; when she was ready, she added a ‘Thank-you’ with each breath. It was as simple as that. The ‘magic’ was in the practicing and practice she did. Her heart rate steadied at around 75 beats per minute and respirations dropped to 16/min. This was on a Thursday and when I left I left behind a handy-dandy little tool called a ‘Pulse Oximeter’ which slips on a finger and measures heart rate and oxygen perfusion of the blood. With Anna’s permission, the family was encouraged to check her heart rate (it only took a few seconds) several times a day Without Making a BIG DEAL about it. On Saturday morning I received a call from her daughter. “What do you two do?” she asked. “Why?” I replied. Because Anna’s heart rate had not gone above 75 bpm since Thursday. On Sunday I received a call from Anna’s son: “I don’t know what kind of medication you gave Mom but whatever it is, she’s relaxing, has slept well, and her heart rate hasn’t gone above 75 bpm”. I mumbled something about meditation, medication, who’s counting?
Planning The Next Steps
Anna is still slowing down, which is very normal. Even the difficulty sleeping and anxiety is common and normal. But how Anna, and her family, dealt with it is not common, at least in my experience. She was one of a very small number of aging people I cared for who were not prescribed an anti-anxiety or anti-depressant medication, and it wasn’t for lack of trying on her physician’s part. Anna also had a pro-lapsed uterus, for years and years, that put constant pressure against her bladder, giving her a feeling of needing to urinate constantly. This also increased her chances of getting a Urinary Tract Infection which, in a 92 yr old woman can wreak all kinds of havoc. Getting up and down and in and out of the bathroom 20 times a day was exhausting in itself, and the family asked if a urinary catheter would allow Anna to relax and sleep better. Sure. And we discussed the risks and benefits. The thing was…the M.D. was already ‘put out’ by the refusal to have a colonoscopy and had, essentially, removed himself from his patient. He even had a bit of a shouting match with Anna’s son about it.
The plan was to keep Anna home as long as possible, then she would move to a local Nursing Home. This wasn’t Anna’s first choice but it was OK, it was the same facility in which her husband spent his last days. So the family arranged for 24 hr Home Health Aide Services, for which they paid all except 20 hrs/week paid by insurance. But we really wanted the catheter and it was my job to convince the M.D. that it was necessary. We got the order but it was effective for one week, only. After all, an in-dwelling catheter poses it’s own risks for infection.
All Goes Well
And, for the next two weeks we all played the game, bending the rules to their limits, to keep Anna comfortable and even, having some fun. For me, this was the only time, as a visiting nurse, that a doctor’s office had my number on speed-dial. The calls started at the end of the prescribed limit for the catheter – one week. “Have you taken the catheter out?” Not yet. Next day. “Blah, blah, blah. Get a urine sample for analysis.” OK. Next day, “Urinalysis is clean, take the catheter out.” I can’t do it today. I’m seeing other patients. And, like clock-work, I took the call every day and listened to the hollering. By the end of the second week an opening at the Nursing Home became available. Just prior to leaving her home, Anna’s catheter was removed, with the assurance that another would be placed as soon as she got to her new room. It wasn’t anyone’s first choice but it was the best option now. Anna settled in and continued to practice her “Thank You” meditation and, in peace and relative comfort, she completed her work of dying, passing through the portal of death as she slept, after everyone had gone home for the day.
You’re Right. This was Unusual.
Yes. Most people in the United States do not live like this. We are more likely to live quite a distance from our adult children. We are more likely to not discuss, let alone develop a plan for, caring for our dying parents. We are more likely to have jobs, careers, other family responsibilities, etc., that limit our freedom to do so. All differences set aside, this family is still a good example of Mindful Dying. They were not afraid of dying, they’d already faced that fear. They were very aware, because they were paying attention, of the rapidly changing variables going on on the inside, as well as the outside. They did NOT take the recommendation of the medical professional, but only with serious consideration about the risks and benefits. They took personal responsibility for their decisions. And they were able to celebrate Anna’s peaceful passing even as they were comforted by the warm lump of grief they held for their own loss. Yes, they even savored some “Tear Soup“. But, having done the work of dying, with their Mom, they didn’t have to have a lot of it, at any one time anyway.
There’s one other ‘element’, in this story, upon which everything else balanced. It’s the element of playfulness. At no time did anyone take themselves too seriously, except the physician & office. The concept of playfulness “lies near the core of Zen, Taoist, Sufi, and Tantric teachings is lost on most Westerners. [Our culture] has evolved so that as adults we “put away childish things,” which is to say [we] seal off with hard gray wax of fear and pomposity that aspect of [our] being that was once attuned to wonder….Although serious playfulness may be an effective means of domesticating fear and pain, it’s not about meowing past the graveyard. No, the seriously playful individual meows right through the graveyard gate, meows into his or her very grave. When Oscar Wilde allegedly gestured at the garish wallpaper in his cheap Parisian hotel room and announced with his dying breath, ‘Either it goes or I go,” he was exhibiting something beyond an irrepressibly brilliant wit. Freud, you see, wasn’t whistling ‘Edelweiss’ when he wrote that gallows humor is indicative of a greatness of soul.” (In Defiance of Gravity by Tom Robbins) Here’s the link to a PDF of this whole article, published in The New Yorker in 2004. I wouldn’t call it ‘easy’ reading but it does explain the “meowing’.
This family has hearts as light as feathers.