MOM’S FINAL JOURNEY: A PROMISE KEPT

By Margaret Pole

Shortly before my beloved father died (see “Just to See Him Smile” in the June 24, 2016 PHA Monthly at prolifehealthcare.org), I promised him that I would care for Mom at home just as I had cared for him. I hope that, by sharing my experiences as my mother’s caregiver, others will be encouraged to care and advocate for their own elderly or disabled loved ones. You’ll never regret the time and attention you lavish on them. Love demands no less.

When I moved back to our family home to care for my elderly parents in March 2013, Mom could still walk unassisted around the house and used a rollator walker for walks around the block. By the time of Dad’s funeral in March 2016, she was using a very basic walker in the house, with great effort, and a wheelchair when she went outside the house.

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Mom on her 90th birthday, Mom at table

Mom had very humbly and quietly put herself “on the back burner” while we focused on Dad’s multiple health travails during his last 15 months of life. And yet her own health was seriously declining. In September 2015, she came through emergency gallbladder surgery with flying colors, despite being 88 years old.

Once Dad left us, I moved Mom into “the hospital room” where we had cared for Dad. By this time, she really needed the hospital bed and easier access to a bedside commode. I also took her for a thorough checkup with her primary care physician, a kindly woman who had cared for my parents for many years.

Mom had a long history of asthma, so I frequently used a pulse oximeter to check her oxygen saturation level. She was now just barely within the normal range. When I asked the doctor to order an oxygen concentrator to have on hand in case of emergency, she said she couldn’t do this without detailed documentation of Mom’s oxygen levels and a lot of red tape, in order to qualify for Medicare coverage.

I didn’t suspect any hidden, sinister agenda on the part of this devout Catholic doctor. I think she wasn’t convinced that Mom’s respiratory health was as tenuous as it was, because she exhibited no obvious signs of distress. Thus the doctor was perhaps reluctant to deal with a bureaucratic procedure that might prove unnecessary. But her response reinforced my perception that the medical establishment sometimes makes it hard to provide quality medical care at home.

Keeping Mom safe

Mom became very unsteady on her feet and was at great risk of falling. When she used her walker around the house, I fastened a gait belt around her abdomen and held onto it from behind. To prevent falls between her bed and her bedside commode, I positioned the large, sturdy wheelchair we had used for Dad between the bed and the commode, allowing just enough space for her to stand up and move from the bed to the commode and back. It also functioned as a grab bar that she gripped to pull herself up from the bed and the commode and move between them.

It was increasingly hard for Mom to get up from a normal chair, so, as her chair at the dining room table we used a large, high, portable commode we had used for Dad. This chair had high handles on the sides that she used to pull herself up and a sturdy lid that worked well as a seat. We put a thick cushion on it and covered it with a decorative throw if we had guests. Mom relished being at our large dining room table for our family gatherings and activities.

Mom still enjoyed relatively good health when we celebrated her 90th birthday in July 2017 (see “Don’t Hesitate to Celebrate” in the September 25, 2017 PHA Monthly at prolifehealthcare.org). During her last year of life, she lost most of her mobility, so we brought her to the table in the wheelchair.

Every day Mom expressed her gratitude for my care. This gave me great joy.

The many dimensions of dementia

Mom’s dementia, which was very slight when Dad left us in 2016, gradually worsened. By mid-2017, she frequently forgot that he had died, believing that he was away on a trip and would be coming home soon. From a guidebook written for family caregivers, I learned the DARE rule: Do not argue, reason, or explain when a dementia patient exhibits irrational thoughts or behavior. Insofar as possible, try to just “go with the flow.” For example, if Mom asked if Dad had come home last night, I usually gently said, “No, not yet,” and then changed the subject.

In the evening, Mom occasionally announced that she was going to sleep in her old bedroom. Sometimes I succeeded in distracting her by suggesting that we have supper or dessert first. But if she was especially insistent, I had to emphatically tell her that this wasn’t safe for her, just as one would with a small child. She sulked for a few minutes afterward, and then the episode was soon forgotten.

Some aspects of dementia can actually be a blessing. I believe my father would have suffered much more during his last year of life if he had been fully aware of his circumstances. His very experienced hospice nurse affirmed my observation. I believe Mom’s forgetfulness significantly eased her deep grief over losing Dad. At my aunt’s recent funeral, one of her granddaughters said her grandmother’s dementia had revealed her soul. She described the way my aunt began speaking openly about how much she loved Jesus and Mary, as a small child would. Similarly, a close friend of mine who had tried for many years to evangelize her anti-religious mother, told me that God reached her mother through her dementia.

Opposition to beneficial treatment

In early May 2018, we made two trips to the emergency room, one week apart. After the second visit, Mom was hospitalized for a few days with a primary diagnosis of acute respiratory failure. When the hospitalist called to give me her diagnoses, she rambled on and on, repeating that “your mother has advanced dementia” and “aggressive care is not appropriate.” This seemed to be her main concern, rather than Mom’s serious physical problems. Due to Mom’s frailty, certain forms of “aggressive care” probably wouldn’t have been appropriate at this stage, but I greatly resented this doctor’s repeated insinuation that Mom wasn’t worth treating because she had dementia.

I figured that the doctor would at least give us an order for an oxygen concentrator to use at home, but she balked at this request, citing some bureaucratic requirement that supposedly hadn’t been met—despite the fact that Mom had continuously received supplemental oxygen from the time the paramedics put her in the ambulance for the second ER visit. I agreed to the doctor’s recommendation for hospice care, largely because it was then the only way to rapidly get an oxygen concentrator for her.

On the advice of a trusted home health care agency, I chose a different hospice organization than the one we had used for Dad. The hospice case manager (also a nurse) gave me a POLST form* to fill out and sign. Using a POLST is voluntary, but when I resisted, the hospice case manager said, “Well then, you’re not ready for hospice. If I had known this, I wouldn’t have agreed to sign up your mother.” My “plan B” was to sign the form, but also select the options for “trial period of full treatment” and “trial period of artificial nutrition, including feeding tubes.” The case manager objected: “You’re not ready for hospice!” I responded, “Are you saying that if I mark these choices on the POLST form, my mother can’t receive hospice services?”

The bottom line for receiving hospice care is that resuscitation won’t be attempted if the patient has no pulse and isn’t breathing. Mom didn’t want resuscitation at this point, so she met that requirement, but that wasn’t enough for this nurse. I explained to her that we probably wouldn’t end up using the trial options, but I wanted to keep them available because I wasn’t sure how Mom’s situation would evolve over time. Mom was then nowhere near the active dying phase. The exasperated nurse then went outside to call and confer with the hospice doctor. A few minutes later she returned and consented to my choices on the POLST form.

From the start of Mom’s hospice care and at every subsequent visit, this same nurse suggested that I stop using the oxygen concentrator, insisting that Mom “looks very comfortable.” When I explained to her that Mom had no obvious signs of respiratory distress when we went to the ER and yet the paramedics had immediately given her oxygen and so did the hospital, she replied, “Well, they have rules they have to follow.” I also explained that Mom was able to take short breaks from using the machine, but within an hour she began to experience discomfort. This fact didn’t seem to faze the nurse. A few weeks later, another of our three hospice nurses began to do the same at each visit, because Mom “seems comfortable.” Fortunately, they couldn’t force me to remove the oxygen.

Good nursing care and a good ending

Otherwise, I felt that Mom received very good nursing care. Especially helpful were the detailed dosing guidelines this agency provided for administering medication, particularly morphine. Another plus was the extremely helpful grief support I received during Mom’s care and am still receiving from the agency’s “spiritual counselor,” who is a clinical therapist.

A few days before Mom died, I had to move her to a nursing home due to a nearby wildfire that knocked out electric power and threatened our neighborhood. She then entered the active dying phase. The facility’s nursing care was excellent, but the doctor there suggested that I remove Mom’s oxygen, claiming they could keep her comfortable with increased pain medication. Fortunately he didn’t force it. I was very grateful for the moral support of my sister who works in a secular hospital. She explained that the hospital routinely provides oxygen as a comfort measure in end-of-life care.

Mom could no longer speak, but she could still hear. We asked her to squeeze our hand or raise her eyebrows if she needed more pain medication. She was aware of visitors and used body language to react to other stimuli. When my brother, who is a priest, called her on the morning of July 10 and told her she would be meeting Jesus soon, she smiled beautifully and died a few minutes after the call ended. It was a beautiful end to a beautiful five-and-half year journey with my parents. And if I had to, I would gladly do it all over again.

Margaret Pole is a freelance writer and editor.

*Physician Orders for Life-Sustaining Treatment form; see “POLST: What is it and why does the PHA oppose it?” at prolifehealthcare.org to learn about the dangerous aspects of this form.

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