TO: Friends and Family
Sound asleep… I feel, rather than hear a noise in the bed next to me as I awake abruptly to Phyl trying to get my attention. I pop up quickly and see her from the light given off by her ventilator machine. Phyl is pounding her chest…. the signal that she needs the cough machine. Running down the hall to find the cough machine which is still in the living room from yesterday’s use, I’m confused. She needs the cough machine so she is choking on her own saliva, but she has never woken up choking from sleep before. A new first… in 4 years of firsts. A new normal?
I must elevate her bed to a more upright position, remove her face mask from the ventilator, and hold the cough machine mask over her mouth and nose. Pressing the button to activate the forced air, her cheeks blow out like a squirrel with a mouth full of nuts and her eyes open wide in a look of surprise. Her chest heaves out as her lungs fill with air and then suddenly, the machine reverses and becomes a vacuum, drawing air out as she coughs to try to clear her throat. She nods and looks at me with expectation… do it again…. and once more I fill her lungs with air.
After a few of these violent breaths and coughs, there is a quick swallowing motion as she clears her throat of the remaining saliva, nods her head, and begins to relax. She is breathing again in those short desperate, chest heaving motions that say it’s time to put her ventilator mask back on. A smile of relief and her eyes get soft again. The fear that surrounds us both whenever she cannot breathe is released. Back to normal…..
That was this morning about 5:00 am…. a bit overly dramatic? Perhaps. Self-indulgent? Yes, okay… maybe. But at 6:00 am when I sat down at my laptop computer after breakfast to sip Earl Gray tea and start my day, I decided to share with you what “normal” is like in our household these days. I’m not looking for sympathy… really. I’m actually pretty grateful to be able to care for Phyl’s needs, whatever happens. And she was never in any real danger. If we did not have the cough machine at hand, she would have eventually cleared her throat of saliva… I’m pretty sure. It’s all part of the new normal.
I can’t spend too much energy thinking about “what if” anyway. My practice is to try to “live in the moment” or “one day at a time”. Anything else is too difficult. So, at 6:00am today, Phyl is sleeping and breathing easily with help from her AVAP. That’s an Average Volume Assured Pressure unit that blows air into her lungs and pulls it back out again. This portable ventilator keeps her breathing and she wears it all day and all night. She can take it off for 15 to 20 minutes if she is sitting upright, allowing her to eat and get her hair washed. But even this short time off the vent tires her diaphragm muscles so much that she is soon calling for “air now” with a weak voice and desperate look on her face. The new normal.
I thought I’d tell you about a “normal” day in this email. Yes, self-indulgent. You can quit reading when you get bored. This goes to a list of folks Phyl has chosen to share periodic updates. Since there are no pictures this time it will just be an email message. I think I need to do this for myself. I need to get it out. Lets see where it goes….
Most mornings begin in far less dramatic a fashion – with the whimpering of our dog, Riley. If I don’t hear him, Phyl will bang on the bed near me with her left arm until I wake up, although this may not continue much longer as her left arm is getting much weaker and it is not easy to move. While she is in her power chair, she has to ask me to position her left elbow on the armrest for her because she cannot lift it herself. Her right hand which is used to type onto her iPad to send emails, comment on Facebook, and “speak” (if she types a sentence the voice in her iPad will say it out loud for her)… this right hand that allows her to be part of the world is getting weaker too. She can no longer use it much after about 5:00pm as it gets tired. This worries her a great deal.
Anyway, back to Riley. He whimpers for his food each morning sometime around 6:00am. I get up to feed him as he won’t quit if I don’t get up and this annoys Phyl – so Riley gets fed. I’ll have my cereal too and read the newspaper each morning at the dining room table. The news is all bad. How many people died yesterday? More important for us, how many are being treated for COVID 19 at Cooley Dickinson Hospital in Northampton, and how many occupy ICU beds (the answer was 5 ICU beds are occupied this morning). I assume if we need an ICU bed today it will be available.
It’s a hell of a way to start the day, but that’s the new normal. Although I’m really not sure we want access to an ICU bed. Phyl and I discussed what we will do if one of us gets sick. If I need to go to the hospital, we are in trouble. There is nobody to stay with Phyl because of the virus. So, she will fake lack of breath (easy for her) at the same time as me and we’ll call 911 for an ambulance for both of us. I know, it’s not much of a plan.
If she gets sick (which is more likely) then we have a decision. We were on a video call with her support team at the Lahey Hospital ALS Clinic this week. I asked her neurologist which does she think would be a better plan if Phyl got COVID 19, based on all that she knows about ALS. Would it be better to be intubated (a tube down her throat into her lungs) and forced air ventilated in a hospital bed, breathing perhaps, but alone,… with nobody to help her get to the bathroom, or scratch her head, or reposition her left hand as needed? Or would it be better to be at home on her current, less invasive ventilator and be cared for by someone who loves her more than life itself? The neurologist could not answer. I didn’t expect she would. But when the news report says that 80% of the people intubated and vented in ICU beds in NY City have died, it seems to be an important question. If aggressive hospital care results in a 20% survival rate in people with healthy lungs, what are the odds that someone with ALS will survive COVID 19? And where would you want to die if that is the most likely outcome? The poor neurologist didn’t answer. I don’t think its overly dramatic to be asking these questions. They keep me awake at night. The new normal.
Phyl and I have not decided what to do really. There is a strong pull to trust the medical people and the hospital care they provide. But the thought of her being alone in an ICU bed haunts me.
Before COVID 19, I would not be counting ICU beds at our local hospital while reading the newspaper. I would have my breakfast at the dining room table and read the latest gossip about the Red Sox. I miss the Red Sox….
I often get an hour or so in the morning to do whatever I want before Phyl calls (she has a door bell she rings when she needs me) although it is getting more difficult for her to press the button on the door bell even with her good right hand. When I tuck her in at night I put two door bells on the rolling cart next to her bed that holds her ventilator and remind her that all she has to do is knock one of the door bell buttons on the floor and I’ll hear it crash. We both smile as this happens more often than not.
During “my time” in the morning, I sit in my office and often read something spiritual. Lately I’m reading Tielhard de Chardin’s book, Hymn of the Universe. I love his writing about the evolution of humankind as the emergence of a universal consciousness which he equates with a Christ (translated as that which was blessed by God) consciousness. Long before Father Richard Rohr wrote about this in his more recent book, The Universal Christ, Tielhard de Chardin noted that Yeshua (Jesus) the man, was not the same as the Christ consciousness which pre-dated the birth of Yeshua. He contends that the “incarnation”, that is the divinization of the material world, has been happening since the beginning of the universe and continues today with the birth of every new baby (have you seen pictures of our new granddaughter Lucia – she would make you believe in the divine). Anyway, the readings may be followed by a meditation or perhaps writing in my journal. Today I’m typing this note to you…. waiting for the doorbell to ring.
When it rings, I jump up to see what Phyl needs. Often it is just to remove some of her blankets. Sometimes I need to take her left arm out from under the covers or move one of her feet to be more comfortable. She lies in bed in the morning and watches the bird feeder outside our bedroom window. And eventually she ring the bell and sticks her thumb out (her right hand of course) like she is hitch hiking and points to the bathroom.
The process of getting her out of bed is a bit awkward and I won’t describe it. It’s not very graceful. But once in her power chair, she has a bit of independence. She drives herself to be near the toilet, and I unhook her respirator tube from the mask, lift her onto the toilet, and reconnect her air tube. She can still sit up on her own, but I have to lift her head off her chest, as her neck muscles are no longer strong enough to lift her head. During our Clinic visit this week, they told me about a neck brace which I ordered on Amazon. It should be here in a few days and will help hold her head up while on the toilet. She is okay in the power chair because it tilts back enough for her head not to fall forward. The new normal.
Next, we move into the kitchen for juice and suctioning. As she can’t easily swallow any longer, saliva builds up in her mouth. The choices are trying to swallow and perhaps choking, drooling down her chin, or suctioning. All three are part of normal for us. But she prefers the suctioning. She indicates with a motion of her right hand moving away from her mouth, which I recognize as “time to suction.” The machine is kind of loud but is effective as a tube is put into her mouth and vacuums out the saliva. We do this 10 to 15 times a day. The good news is that she doesn’t need it at night! Some folks with ALS need nighttime suctioning too. We both are grateful to be able to sleep through the night most of the time but are aware that the new normal might include suctioning at night as well.
Back to the story of our day…. the next step is washing her face and chap stick for her lips and then I deliver her iPad so she can check to see what her friends (and especially our grandchildren) are up to. Every morning she is greeted with messages from friends. Sometimes it’s just a note saying that you are thinking of her. About half the time she gets a video of Brian’s two girls, Elena and Lucia, since they have been up for several hours already. A two-minute clip of Elena dancing around the house brightens up Phyl’s day immeasurably. She lives for these messages, so please keep them coming (email, text, video… whatever works for you). While she is “joining the world” online I make her breakfast and prepare her meds.
Damn… I’ve written three pages in MS Word and I’m only up to 9:00 am in the morning. As I said, stop reading when you get bored. Our lives are not really all that exciting.
Back to breakfast…. she loves bacon! And for the past few days it has been matzah brie to mark Passover. She will eat her meals in her power chair in the living room. If it is something she can eat on her own (I have to feed her anything that requires a spoon or a fork as she can’t lift these to her mouth any longer) I’ll have another cup of tea while she eats, check into my class on my laptop (I’m only teaching one class this semester online so it’s pretty easy) and I watch her eat – in case she chokes. She chokes on her food during about 50% of her meals. There is really little I can do, but I will jump up and rest my hand on shoulder to reassure her that I’m here while she tries to clear her throat. She is not really in danger, but it is pretty scary nevertheless. It may take 5 minutes of trying to cough, gaging, trying to breathe, cough, gag some more etc. When it slows down a bit, she may pound her chest indicating that she wants the cough machine which does the final clear out of her throat. Then a weak smile and a few more bites of food.
She is really not eating much but I try to make sure she has three meals a day. I have a concentrated liquid “food” that I can put directly into her stomach with the feeding tube and a syringe. I always feel better when I get a bit of Kates Farm Liquid Food into her once a day, but she prefers to try to eat real food. She tells me that when she goes to bed at night, she dreams about eating a huge meal. But a few bites of “real food” sometimes fills her up. I know she is not eating enough but I’ve decided not to bug her about eating more. She has enough problems.
So, our day goes on. We have an aide that comes in three times a week to help with household chores in the morning. She also stretches Phyl’s arms and legs, and massages her hands which are curled up into a claw. She can no longer open her fingers, which makes typing difficult. She uses the iPad pencil on the screen, but it is getting more difficult to hold. I got her a head mouse which she is learning to use. Movement of her head in any direction causes the mouse cursor on the screen to move. I installed “dwell” software so if she holds the mouse over something on the screen it “clicks” for her. She doesn’t like it but will need it soon as she loses use of her right hand and arm. The new normal.
While her aide is here, I can go shopping, out for a short bike ride or perhaps work on my class. I’m preparing my summer online classes now, which I’ve taught for quite a while so it’s pretty easy. In the fall and spring semesters I have two classes each term and they are now fully online as I’m not going to campus any longer (well, nobody is thanks to COVID 19 but that has been my plan all along). So, I’m getting my fall and spring classes ready now. I love this creative part of teaching and yesterday I took two online workshops on how to do it better. I can’t be too far from Phyl in case she chokes so I sit on the couch in the living room and she is in her power chair. If she needs me, she just signals.
Phyl often reads or listens to music in the afternoon. If the weather is good, she will go out on the back deck to sit in the sun. On nice days, we try to walk Riley around the block. It is difficult for Phyl since when people meet us (at a distance of course) they want to greet Phyl and chat. She is wearing her respirator mask and can’t respond, so I try to manage some small talk (I’m not very good at it) and interpret Phyl’s expressions as best I can. It is awkward and I pray that nobody is out while we are walking the dog. But Phyl’s eyes say that she is happy to see our neighbors while we go around. She is a much better person than me… but you knew that.
Eventually she will have something light for lunch, soup or lately it has been matzoh with gefilte fish. Perhaps more choking or maybe not… and the day goes on. She is on her iPad most of the day communicating with friends and messing about on Facebook. I have tried to provide some sort of shared activity, but it is hard. We avoid television during the day.
Some afternoons a friend will stop by to sit on the deck, but this is rare as we are all social distancing and it’s a bit dangerous for Phyl. We’ve had video meetings on the computer lately with both friends and doctors. Last Saturday morning, Jeremy set up a video chat for us with his brother’s and their kids. Phyl smiled through the whole thing! She can’t participate much since the iPad talker takes time to type out a sentence and she is wearing her face mask, but she tries.
Most afternoons are for reading and napping. She sleeps a lot during the day, as she is very tired most of the time. This gives me a chance to work on my classes while watching her sleep. I can’t go out and leave her alone as I did last summer so a neighbor comes by to walk Riley almost every day. Lately, we have been going through our old photo albums selecting pictures of the two of us over the past 50 years. There are a lot of pictures! I take a picture of the old photograph she selects with my digital camera and load it into my computer. I’m planning on putting them onto one of those revolving picture screens so we can look back over the years. We talk about all of the events of our life together and how joyful it has been most of the time. Yes, some ups (thanks to her and our kids) and downs (my fault for sure) but mostly 50 years of joy. The highlights are the kids and grandchildren of course. We both often note how lucky we have been.
Looking back over the years has given me some perspective. Yes, it is true that we are struggling right now (Phyl much more than me of course). She is frustrated that she can’t do anything useful around the house and she misses our grandchildren terribly. She feels isolated, scared and frankly cheated. For the past few years, there was always the hope of some miracle cure for ALS but nothing that is in the works now is designed to restore motor neurons. The treatments in research are all about slowing down the progress of the disease not restoring capacity. Phyl doesn’t admit (maybe she does but she won’t say it) that there is little hope that she will improve. I suppose there is a possibility but not likely.
We both know how this ends but we are not talking about it much. The big question is do we try to extend her life as long as possible with a tracheostomy and a permanent ventilator. This may not even be a possibility if she gets sick from the virus. So I’ve been thinking about death a lot lately. Even before COVID 19, I had 3 friends die this year who were my age and quite a few acquaintances pass on. So, it is on my mind.
I’m not personally afraid of death, as I know it is both an end of something and a beginning of something new. Consciousness continues even as the physical body is no longer functional and I’m kind of curious about what’s next. But Phyl has always been afraid of the great unknown that is beyond this life. We talk about it sometimes, but it is difficult for her to talk about. I think it is possible to prepare for a good death. I’ve read a lot about this lately and feel that I can accept whatever comes along for me… but who knows? Maybe I’m kidding myself. In any case, I need to stay healthy for now to take care of Phyl!
And before we know it, it is 5:30pm and we can watch the BBC followed by PBS news (all bad). I make her dinner while she watches the news. We are still getting two meal deliveries a week from her friends! She eats first so I can feed her and then I eat. This is followed by a few hours of some Netflix or Amazon Prime TV series. Lately she’s enjoying Death in Paradise, a series about a stuffy British detective on a tropical island in the Caribbean. We both like the scenery but I often take this time to work on my classes. I can mostly fit my class work around her schedule. We’ve been finishing the day with the old 1970’s series, All Creatures Great and Small, about a British veterinarian in a rural practice in the midlands region of England. It is simple and sweet. Just the kind of show to watch before bed!
Our days are quiet and pretty boring (for Phyl). I’m fully occupied (unlike many people today) with my online teaching, being a full-time caregiver, keeping the house running, and taking care of my Mother’s finances (thank goodness my brothers do most of the work taking care of Mom). I am pretty much non-stop as soon as that first door bell rings! It’s more difficult for Phyl as she doesn’t know what to do with herself during the day. One day is much like the last….and (hopefully) the next – as we really don’t want any excitement. We are ready for bed about 9:30 pm. I make up her nighttime medications while she watches Rachel Madow.
Preparation for bed is another juggling act (not very graceful again). I’m not very good at brushing her teeth or getting her into her pajamas, but eventually I’ll lift her into bed and get her legs and arms in a comfortable position for the night. She can’t move so this takes a while to get right. We use an adjustable bed and three different wedges and memory foam pillows to make her comfortable. There are generally several adjustments before she falls asleep, so I am up and down a bit until she settles. I’ll read for a while and then fall a sleep. It isn’t a sound sleep much of the time as I’m looking up to check on her regularly. Oh well….
So, we are back to the beginning – morning again. We are living 24 hours at a time, so I guess that’s the end of my story for today. It is a long one….. if you made it this far, thanks.
And please do keep texting, emailing and communicating in whatever way possible with Phyl. She needs you more than ever…..
Love and peace….
John
Click here for the next email in Phyl’s story
John Philip Newell, the author of Listening for the Heartbeat of God: A Celtic Spirituality, is one of the most prominent Christian teachers of spirituality in the Western world.
Everything looks the same – and nothing feels the same. My wife has died. The center of our family has been ripped out leaving the rest of us to hold onto each other, still alive – but without our heart. Nothing makes much sense in my world without Phyl. The searing pain appears unexpected from time to time, and then fades back into a dull ache. And the worst part is that 
I’ve read several books (actually I started but didn’t finish several books) on grieving the loss of a spouse and found them to be mostly crap. They don’t tell you about the searing pain that feels like a knife entering my chest when I think about her. They don’t tell you that everything you do again for the first time without her takes your breath away. But I did find one book that I’m sharing with folks that seems mostly consistent with my own experience and feelings. The title is “It’s Okay that You’re Not Okay” – and I’m a long way from being “okay”. If you are curious and need some help grieving honestly yourself, you might want to listen to the introduction which I’ve linked below. If you prefer denial and distraction (which are useful tools for dealing with unbearable pain) don’t listen to it. The introduction chapter is about 9 minutes long. 
