Quarantine Daze

Grass is growing in Piazza Navona

It’s been a little more than three weeks since my last post, and now half the world has joined in the COVID19 quarantine protocol: stay home; wear a mask and gloves; wash your hands; don’t touch your face; disinfect everything. As the coronavirus hit countries in waves, so too did the harsh reality of the major disruption, despair, and sorrow it brings. Fortunately for us, Rome and its environs have been spared the devastating death toll in northern Italy, and as of today there are 2,340 positive patients; in the region of Lazio there have been 212 deaths due to coronavirus and its complications. 

Meanwhile, my mother has been making slow and steady progress in her recovery. It’s most easily measured in things like what she is able to do once a week with a physical therapist. Last week, it was managing to stand up from the wheelchair and hold onto the bed frame for as much as two minutes at a time, for a total of six times. This week, she held

Helping Maureen in PT

onto her rollator and walked several steps, first in her bedroom, then in the kitchen, also for a total of six times. This required a team of helpers that physically and emotionally supported her trajectory across the floor. She has also been using a mechanical pedaling bike out on the terrace for half an hour a day, helped by the patient nurses who guide her weaker left foot and encourage her to keep going.

Daily pedaling outside

Improvement is also noticeable in her transition from sippy cup to glass, and in the number of hours she can tolerate being out of bed either in the wheelchair or electric recliner. She’s easily managing 4-5 hours, some days even more than 6, with an hour outside in the afternoon sun on good days. 

We are fortunate that we continue to have excellent nursing care in afternoons and nights, although two of our regular nurses have been reassigned to COVID19 patients in hospitals. It breaks my heart to know they are putting themselves at risk of grave illness, but I also tell myself that those patients deserve and need the very best care to recover, and good nurses are their first line of defense in fighting the virus. 

Like others managing the quarantine, I pass the time

Yummy muffins

cooking, and even baking, and have discovered my gluten free banana chocolate chip oat muffins are quite popular with the nurses (muffins are just catching on in Italy). I got two Ottolenghi cookbooks from my sister, and with friends in California and one in New Zealand we share photos and recipe experiments in a WhatsApp group. I try to give Maureen tasty, easy to eat food, and balance her diet with fresh market vegetables, beef and chicken in small portions, and rice or potatoes. I make a fruit puree with apples, pears, ginger, honey and spices that she loves as a snack. Eating requires a lot of focus for her, as she carefully chews slowly to be sure everything in her mouth is safe to swallow, and sometimes if her eyes close and she gets sleepy she needs to be reminded to stay awake and alert. I leave much of the task of feeding her to my helpers as I’m usually still in the kitchen working on meal preparation. So far she has had minimal digestive issues and all her tests point to no more problems with diverticulitis or bleeding. I still make sure she has a daily probiotic VSL3 mixed in her morning brew with aloe and fresh orange juice.

For me one of the most remarkable things is that all of her medication with the exception of her asthma inhalers has changed. In addition to stopping the Alzheimer medications of donepezil and memantine, she is not taking previous blood pressure medications or montelukast for asthma. She takes a daily diuretic, Lasix, a beta blocker for her heart, an anticoagulant, and a blood pressure medicine. Her kidney function has improved, her blood pressure is stable, and her heart and lungs are working fine. There has been some notable decline in terms of Alzheimer’s symptoms, but some improvements as well, so it’s hard to say what will be the lasting effect of both her health trauma and suspending the two medications. To help her sleep, and to calm the agitation she experiences in the middle of the night, we use a low dose of Lexotan (we tried Xanax, but it didn’t work) in combination with natural sleep aids valerian and melatonin. 

Mimi helps me with my ankle magnet therapy,
now dubbed Mimimagnetoterapia

Like others looking for creative ways to pass the time at home, we listen to a lot of different music throughout the day: Yo-Yo Ma’s Bach recording;  Frank Sinatra from the late 40s-early 50s with the swinging Harry James Orchestra; Ella Fitzgerald’s live concert in Rome recording; Morabeza, a new recording by Italian singer Tosca (and we have tickets to hear her live in Rome in mid-May); in the evening to wind down, Stan Getz, Bill Evans, or Oscar Peterson. We also tried a collage activity exploring concepts of isolated, tangential, and overlapping led online by our artist and teacher friend Barbara Ellmann, offered through Lincoln Center’s education program, and hung our collages

My collage had a Roman theme

on the wall across from Maureen’s bed. We avoid the news now, and prefer concerts or classic films, limiting TV watching to less than an hour or two a day. There’s always daily chores and now we’re starting some spring cleaning and closet reorganization projects too. 

I know I am blessed to be spared the common hardships of the quarantine in that I don’t have to work from home and schedule online meetings or classes, I don’t have to homeschool any children, I am not ill, and I can get whatever food and medicine we need with relatively little effort and low risk of infection. Even my gyrotonics teacher is offering free classes through Skype, so I’m getting my weekly exercise. But I am blessed in another way, that fellow caretakers will probably recognize. I am used to this feeling of staying close to home, attending to domestic chores, slowly feeling the passing of time, because my mother is my number one priority. It’s been three years. I can handle whatever quarantine time is still to come. Every day with Maureen is precious. 

Hospitalization and Frailty

Maureen in the afternoon sun

Aside from the two times she gave birth, my mother has never had to stay in a hospital. She has had cataract surgery, Mohs surgery for skin cancers, and she has been treated in an emergency room and in an urgent care facility, but as of this week, she has never been hospitalized overnight for illness. Now that she has Alzheimer’s, I have dreaded the possibility of having to either call an ambulance, or admit her to a hospital, as I feared the resulting anxiety and disorientation would be more debilitating than whatever affliction might befall her. So last weekend when she began to have serious rectal bleeding, I made a round of phone calls and found that my anesthesia doctor from my recent ankle surgery was also practicing geriatric medicine and could do a house call that same afternoon. Imagine that! 

He immediately had me suspend four of her medications. Two were her Alzheimer’s medications, donepezil and memantine, here in Italy known as Aricept and Ebixa. For some time I had suspected they were doing more damage than good. In fact I recently read that memantine and donepezil should not be taken together, and not by patients with heart conditions. My mother has both high blood pressure and a heart arrhythmia. Donepezil is also bad for people with asthma, which my mother has had all her life. The other drug was warfarin, which thins the blood to presumably prevent strokes and heart attacks, but it carries a risky potential for causing internal bleeding. We agreed that hospitalization was not yet necessary, and might make matters worse for her. When her symptoms persisted the next day, he had her admitted to a private hospital not far from where we live.

Her hemoglobin was dangerously low, so she was given blood and plasma transfusions in order to prepare her for a diagnostic endoscopy and colonoscopy the following day. Thankfully with the help of some fantastic nurses, I got her through the prep and we had generally good news from the procedures: no tumors, no hemorrhoids, no need for any surgery. However, she had diverticulitis, and the working hypothesis was that her worsening anemia coupled with the impact of that cocktail of medications caused internal bleeding that eventually led to the hemorrhaging. Luckily a careful diet can help the intestinal healing, and now we will work to figure out how to improve her heart and lung health. 

I imagine readers of this blog are well aware of the dubious results of these two widely prescribed Alzheimer’s medications, and of the many undesirable side effects. Dr. Dale Bredesen whose work I have previously written about, posted on his Facebook page about a year ago about a meta analysis:

a recent study showed that patients treated with standard Alzheimer’s drugs donepezil (Aricept) or memantine (Namenda) actually declined more rapidly than those who were not treated with those drugs (Kennedy et al., JAMA Network Open. 2018;1(7):e184080. doi:10.1001/jamanetworkopen.2018.4080

What may be less understood by caretakers and even medical professionals is how the frailty of old age can mean unseen vulnerability that is not diagnosed with typical bloodwork and routine doctor visits. I think of myself as a pretty well-informed caretaker, someone who has done a lot of reading about Alzheimer’s, but I did not go to medical school, so I put a great deal of trust in doctors. When I saw symptoms like nighttime coughing, complaints of feeling cold, rising creatinine levels, increased sleepiness, breathlessness with fatigue, I did not pursue the possible reasons, even though I wondered about the medicines that negatively impacted kidney function. My mother’s doctor most recently diagnosed a flair up of asthma and prescribed prednisone, and it reassured me the chest x-ray showed no change from the previous one and therefore she felt the heart was not to blame for her symptoms. In retrospect, I am shocked that a simple online search turned up the fact that iron-deficiency anemia (which my mother has been taking iron supplements for since late fall) is almost always due to blood loss, and a simple test can determine if there is blood in the stomach or bowels. 

Lessons learned the hard way always leave a residue of guilt. I am grateful for the happy outcome of the procedure, for a trustworthy and competent doctor and his colleagues at the hospital, and for a mother who is a stubborn warrior and even in her most distressed state was willing to fight through it. I am more skeptical than before all this happened about the medical establishment, which seems even more dysfunctional than the really messed up field of education that has been my life's work. I see disturbing parallels. We know from replicable and reliable research that these medications are not working and are even dangerous, yet millions continue to take them in the hope they'll do something for their loved ones. We know that the toxic testing culture taking over educational settings is not improving learning outcomes and is actually harmful to students and teachers, yet we persist in ranking, sorting, praising and publicly humiliating people. We have a long way to go. We're not getting younger, and most of us are not getting healthier. Or for that matter, smarter.