NORA’S JOURNAL (1): POWER OF ATTORNEY

It’s November 11. I’ve just taken my two daughters to the cenotaph ceremony in our small island community–we left the event early to obtain the snack demanded by the two-year-old (loudly during the remembrance prayer) and to feed three siamese cats while our neighbours are in Disneyland (“It’s not fair!” the inevitable pronouncement of my usually complacent seven-year-old)…

Now I’m back at the apartment, which we’re renting while we renovate our house–mom’s room seems somehow, though still cluttered with all of her belongings, an empty shell since she was admitted to hospital over a month ago. On the bookshelf is the family bible, containing a card on which she recorded, three years ago when my father died, her funeral wishes. She has chosen certain pieces of music, scriptural readings, even a guest list. Looking through my mom’s filing cabinet for banking and other documents, I find the letters received by her mother, informing Nana Hamm (then a young mother of two) of the grave injury and subsequent death of her husband, a chaplain serving overseas in World War II. I heard on the radio today that the number of veterans from the second world war is dwindling–along with some platitude about the relentless march of time that will finally claim all soldiers.

I cannot imagine the anguish of receiving such news, how colossally unfair it must have seemed to Nana Hamm to lose her husband in 1944, while others lived to return to their wives and families, to go on with the business of living their daily lives. In the wake of this disaster, she picked up the pieces of her life and became an academic in the small college town where she lived with her two young children. I’m having enough trouble processing the final stages of my mom’s life, or perhaps I should say the initial stages of her death.

It’s hard to keep the guilt at bay as I think of the stages our family has gone through in the past several weeks. First, mom was admitted to hospital with pneumonia: one day when we got home from work, she was so disoriented and incoherent that we felt she must have had a stroke. Paramedics came for a quick assessment and spirited her off to Emergency, from whence she was diagnosed with a possible urinary tract infection, then pneumonia; she was just starting to recover from the latter when she fell out of her hospital bed and broke her hip, requiring a partial hip replacement; just starting to recover from that when she contracted antibiotic-resistant VRE; then came a catastrophic stroke that left her partially immobile, and unable to swallow or speak.

Now she lingers in a truly twilight existence that no one would choose, unable to communicate but seemingly aware of her surroundings and those who come and go from her hospital room, including yours truly. Emails and phone calls have been pouring in from across the country, including a message from my mom’s college classmate who can’t believe all the “unfair” things that have happened; I admit I did a double take when I read that word: after all, where and how does fairness enter into it?

“Fair doesn’t count,” my godfather always used to say–and with particular resonance when he approached his own death from cancer a few years back. “Only the good die young–you’re safe,” I countered. He laughed. This was back when I used to wish my godparents, who’d raised me through my teenage years, were my real parents. Meanwhile, my mother and my father, both of whom devoted their lives to the service of others (a prophet, they say, is revered everywhere except at home) followed their own paths, along their own, respective, journeys.

Now each of the stages in my mother’s final journey parallels a shift in my own perceptions. I now look back to the time when she was with us with a sense of unreality. Even those first couple of weeks when she was in hospital, I expended considerable time and energy trying to convince social workers and medical personnel not to send her home but to place her instead in a care facility. At one point, the social worker said, “We can’t go ahead and make arrangements for your mother’s long term care until her condition stabilizes–it wouldn’t be fair to her.” Fair, shmair, I thought: I just can’t take care of her anymore.

I know, looking back, that I had been feeling almost overwhelming bitterness and resentment, but couldn’t conjure up either emotion now to save my life–and would do just about anything to save hers. Not that she seems to want to be saved! She’s tried on several occasions, apparently, to use her limited strength to rip out her feeding tube, and who can blame her? I can’t, but it’s odd to find myself in this position. Those phrases you hear or read–DNR, power of attorney, next of kin–they are all so immediate and real to me now.

Each new moral dilemma, predicated on the notion of what’s fair to whom, seems unanswerable: should I contact her estranged, incarcerated ex-husband somehow? (No). Should I stop payment on the life insurance policy she took out on him in bygone days when they thought he was sure to predecease her? (Yes). Should I take my children to visit her, thus inevitably upsetting her and perhaps scarring the girls for life? (Survey says No, I said Yes. And did. And it was fine…).

Sometimes I think all I’m doing is buying myself time: time to process the grief, time to say goodbye. If someone had told me I would hold my mother’s hand, give her a hug, kiss her cheek–I would have said they were crazy…but I wouldn’t have been that polite. Of course, politeness, like all the gentle trappings of social nicety, is highly overrated anyway. It wasn’t politeness, or gentleness, if you ask me, that brought my mom back from the brink. Because, really, I need to be clear. I know I’m painting a bleak picture here, but the bottom line is that she is still alive; two weeks ago, we got a call saying she had very little time left, perhaps as little as a few days. They would try to keep her comfortable, the doctor said.

There was the question of the feeding tube. Unable to swallow, with only IV fluids sustaining her, my mother was in a weakened condition. Whether she would make any further improvement was unknowable, but it seemed “only fair” to give her a chance.

I dragged myself into the hospital after work the next day, expecting the worst.

Then when I saw her, something inside me shifted. It wasn’t at all like the snap at mom’s speech therapist’s office earlier this fall–the one that (as I told myself) caused my mother to lose her will to live. That earlier snap was all about me, I think: how overwhelmed I was, trying to care for her at home and raise my young family and work full time and support my husband while we build a house. But suddenly at this moment, in this snap, all of that fell away, along with years and decades and a lifetime of, well, unfairness. All that remained was gratitude that I could have just a little more time with her.

That’s all we need, just a little more time. And I’ll use whatever power I have to prolong it.

It’s only fair.

NORA’S JOURNAL (2): A LIVING WILL

In a world where we can backdate blog posts to our heart’s content (which is why it looks as though I’ve posted something every week for the past six years in my family chronicle), maybe it’s not so unusual to say that in some respects I’m still stuck in Christmas mode although the New Year is waning. Every once in awhile I’ll hear tell of someone else who’s in the same boat, like the mom at my daughter’s daycare this morning who said she had a choice over the weekend of taking down the tree or washing the dishes.

As for me, I keep finding little things around the apartment that should be in the designated Christmas bins in the storage tent that burgeons beside the house we’re perpetually renovating: I stop by the homestead every few days to open a container and tuck in the odd Charlie-Brown-Christmas fridge magnet, reindeer-motif tea-towel, tiny Baby Jesus unaccountably separated from his fellow celebrants at the Nativity scene, etc. My older daughter is still reading the Christmas-themed Archie comics that came in her stocking, and I am loath to take them away, as they still no doubt have some cosmic wisdom to impart (did you know that Jughead is actually a great dancer?–it’s one of Riverdale’s best kept secrets!)… And spread-eagled on the dining room table (not that our tiny apartment actually has a dining room–our new goal is to be back in our renovated house by next Christmas) is the Globe and Mail Holiday Crossword, still only about half done, and that within the last few days.

Back in early December, my older daughter Tallis and I were talking about the upcoming holiday, and I said, “Won’t this be the best Christmas ever, because we have a two-and-a-half-year-old who can really understand it for the first time?”

“Yes,” she agreed, “But it will also be the worst Christmas ever.”

“Why, sweetheart?” I asked.

“Because she won’t be here with us.”

“Oh, yes, I see what you mean…But we will go and see her in hospital and bring her some presents on Christmas Eve. Won’t that be nice?”

“Hmm.”

She was right, of course. Poor thing. There she was, stuck in a hospital bed, unable to move much or speak much. Choking back small amounts of applesauce, a real milestone, apparently. Using the ceiling lift, they got her up into a wheelchair for our visit. We did bring cards and presents and a poinsettia–on a friend’s suggestion, I included gifts from her for the girls–and (as I seem to say about everything these days), it was what it was.

Back at home, I fielded numerous phone calls from friends and relatives, all wanting to know of my mother’s condition and whether there was any improvement. “No one would want to live like this” was the general consensus. I am still carrying around a significant amount of guilt, A. that I somehow caused her stroke (and deprived her of her will to live) by being impatient with her care requirements when she lived with us, and B. that I made the wrong decision in having them install a feeding tube at a crucial moment when perhaps if that had not been done she could have quietly starved to death.

“Did she have a Living Will?” another recurrent question. No she did not, and we never had that conversation.

My husband Hiram and I promptly had “the conversation.” Pull the plug, his verdict; I want to live, my pronouncement on the subject. Yes, I told him, even if I am dementedly smearing my own feces on the walls, I want to live. It’s all we have, this life. I will cling to it as long as possible.

A few days after Christmas we got the call that my mother no longer required her feeding tube and was stable enough to be eligible for transfer to a local care facility. A whirl of activity accompanied this transition: anyone who has ever moved a relative into an old folks’ home (or similar place) will know. Even enumerating all the details makes me so tired I can’t think, so I won’t list them here.

However, the amazing part of it is that it really is so much better than hospital. I had my doubts about it at first: the medical attention and immediacy of doctors obviously is the advantage of hospitalization–and some aspects of hospital care, including regular speech therapy, are not standard parts of care at the Lodge. Of course, what my mother did not have at the hospital was the interaction with other residents, the recreational programming including music and exercise, the ability to personalize her room with paintings on the wall, a few pieces of furniture, linens and clothing from home, etc. After three months in a hospital bed, wearing a hospital gown, she is now able to be dressed in real clothes and wheeled down to the dining room/lounge. She has even regained some ability to speak.

We keep thinking of items to bring to her: certain photographs, paintings, artwork by the girls, bulletin boards, a whiteboard and markers, a television. Already that TV has enabled her to request something else she really wanted. We spent one afternoon with her, in which she tried unsuccessfully to find the words to tell us something specific that she wanted us to get for her. Finally, as we were leaving, she turned on the TV and there was a commercial that mentioned something about a phone number. “Phone number!” she exclaimed.

“Do you want a phone?” my husband asked.

“Yes!” she said.

It’s something I wouldn’t have thought of, because her ability to talk is so limited, and she certainly would not be able to dial a phone number or anything like that. But people could call her, of course, if we gave them the number. So we went ahead and arranged it. Other benefits of being in the care home include access to regular pedicures, eye exams, dental work, and hair care. One of my frustrations about the hospital was that hair care did not seem to be part of the agenda even for long term patients. Now it happens every week!

The staff seem very friendly and nice, as do the other residents. Some of the latter are more alert than others, it’s true–but on the whole I hope it will be a stimulus to have the other people around. Even with all the hustle and bustle of the hospital ward, it always seemed to me to be a very isolating environment. My mother had started out with a nice roommate, but ended up first with a crazy one and then alone in a single room. At the care home, she does have a private room as well, but I’m confident she doesn’t spend all her time there–they seem to make a good attempt to get the residents integrated with the rest of the community.

A lot of this may be my attempt to make myself feel better about it all, since really there’s not much I can do about the situation.

Every time we go to see her, she cries. I continue to tell the girls that she just feels emotionally a bit overwhelmed, that these are tears of joy, that she is not sad to see them. Certainly the older one understands, but the younger child maybe not so much. “She cries,” I heard her say when someone asked her about her visit with her grandmother. I find myself wishing that this were not the case, but again I don’t think there’s much I can do.

I try to see all the good things that have come out of this situation: renewed contact and involvement with my mother’s brother, not to mention all the old-time connections. I went through her address book and sent Christmas cards (not on time for Christmas, alas) to everyone whose name had a circled C beside it, a symbol which I took to mean that these were her regular Christmas card correspondents. In writing to them, I was aware that some might not know of the changes in my mother’s life over the past few months. It took ages! I was surprised how many there were: about 50. I was impressed. In a way, this list was a testimonial to my her ability to be in contact with people, a legacy of connection. It’s also why she wanted that telephone so much, I realized. The cards and letters still pour in, and I read them to her each time we visit the Lodge, then carefully pin them to the bulletin board where she can see these tangible reminders of her many loyal correspondents, still willing in this digital age to pick up a pen and write to their friend. What they say is how much she’s inspired them, how they value her involvement in their lives stretching back many decades, across the distance of time and space. It’s such a credit to her, really.

This was the best gift in the “worst” Christmas, to have that positive feeling mingled in with all the others: mother, you can still impress me.

NORA’S JOURNAL (3): DEGREE OF INTERVENTION

I’ve come to dread checking my home phone messages, which is how they contact me with news from the care facility where mom is housed–no news is good news, right? So I force myself to dial the access code, my heart in my throat (yes, I’ve been waking up in the night with chest pains; yes, I think it’s stress-related. But enough about me!)

The other day was no exception. I heard the dreaded beeping that indicated the presence of messages on the system. “You have ONE new message. Dial 1 to retrieve your message.” Beep. The voice in the message was somewhat garbled through a bad connection, and the effect was exacerbated by a thick accent of (to me) unknown origin. I heard something about “this is…calling from…Lodge…your mother…gold rings…envelope…Degree of Intervention Form…Category 2A…2B…Doctor…2B…Degree of Intervention.”

My mind raced through the possibilities.

I had done the inevitable roller coaster through “gold rings”–something about her jewellry–a minor concern, really, in the grand scheme of things–to “Degree of Intervention.” The latter is a legal form on file at the care facility, to be signed by the Power of Attorney and/or next of kin (I guess I’m both), essentially codifying a DNR (do not resuscitate) order so that one’s loved one can die a natural death without excessive intervention in the form of cardio-pulmonary resuscitation, etc. It’s not quite that simple, though. These forms never are. You can choose from four menu options.

I’m still swallowing the guilt of having a feeding tube installed for mom last fall, I guess. Various folks have let me know by direct and indirect means that they found my decisions and actions unconscionable. I don’t know, I guess I was supposed to just let her starve to death, if you call that dying with dignity.

I agree her current life is not desirable. Not only can she not talk (beyond a few stock words and phrases–she can’t make up her mind to say something and then say it) or eat normal food (most people would call what she’s able to eat, “mush”); she cries so much, it’s just heartbreaking. Once she got on the phone to me (with the help of a nurse who then just left the conversation swinging in the wind) and sobbed for half an hour straight, trying to tell me something which I was never able to determine. Thank god the kids were in bed, and my husband was out of town (at his own mother’s funeral–I keep intending to tell mom about this death but simply cannot bring myself to do it–seems like whenever I’m on the verge of being able to do so during a visit with her, she starts crying or wants to ring the bell for a nurse to help her go to the bathroom), so I was alone.

Another time she left a message: “I’m calling… I’m calling… I’m calling…” times thirty.

I’ve had so much time to process all of the grief about my mother and her situation, that I seem to be reverting back to a response that characterized my feelings when she was still living with us: anger. I know this sounds bad, but I’m just being honest. I’m flashing back to an incident that happened on the ferry last summer and which now seems imbued with metaphorical significance.

On that fateful trip (sounds like we’re venturing into Gilligan’s Island territory here), I had gone upstairs and left my mom in the car; we were returning from her speech therapy session in town, something I crammed into an overfull schedule by sheer force of will. The girls were waiting to be picked up at daycamp and daycare respectively. I know my motivation in taking mom to the therapy sessions was simply that this was something I could do for her, instead of what she really wanted or needed, which was simply affection.

Anyway, on this occasion, I came back to start the car about a minute before the ferry docked, and–every driver’s nightmare–I simply could not find my keys. My mom said she had taken them from the ignition to try to open her pop can with them, but she could not remember what had happened next. A frantic search ensued. No sign. In desperation, I phoned my husband to come down and bring me the spare set of keys from our apartment. Meanwhile, the ferry attendant warned me that if I could not get off the ferry before it was time to load the cars, I would have to go back to the other side. Flashing through my mind were the enormous complications of being unable to pick up my kids. Taking five minutes to bring me the keys was one thing, but if my husband had to miss the rest of his workday, that would not be good. We were already falling hopelessly behind in our house renovation–time and money had long run out. (At least we had mom’s pension cheques paying the rent back then; you don’t know what you’ve got till it’s gone.)

Short story short, the spare keys arrived on time, and I got off the ferry OK. Later I found my set of keys under my mom’s seat–I remember I hadn’t checked that seemingly obvious option very carefully because I could never bear to be physically close to her. This makes me sound like an awful person, and indeed I do feel like one most of the time these days.

Obviously none of it was her fault (she was upset and confused, genuinely remorseful), which I think made my anger even worse–I did not have a focus or a means of expression for it, so it just festered, as it had been doing for well over four decades of my conscious life on this planet.

All of this preamble is to explain that it was not because of my being such a loving and caring daughter that I panicked when I got that message. I don’t know what it was. I have been feeling for some time now that every time I say to myself that things couldn’t get much worse, they do. I end up wishing I hadn’t taken it for granted when things weren’t so bad.

But back to the fateful phone call that night. I called back the Lodge and tried to remain calm.

“Someone left a message for me, so I am just trying to clarify the situation.”

“Mmmm hmmm?” came a distracted-sounding voice. Great, I thought. But thanks to the miracle of real-time conversation, I was able to ascertain the truth.

My mother’s hands were somewhat swollen, so they had removed her rings and placed them in an envelope at the nursing station; I could pick them up the next time I visited. They had wanted to let me know particularly because the rings seemed valuable–as indeed they were. One set was my grandmother’s (my mother’s mother’s) engagement and wedding ring in delicately-wrought gold (I’ve taken to wearing them now, and they feel as if they have always resided on my right ring finger); the other set was my mother’s engagement and wedding ring from her second marriage–why was she wearing them? Looking in her desk at home I saw photos attesting to her attachment to a marriage I thought she had counted as being in the past. I would not wear those rings, but I put them aside carefully. (Though, come to think of it, I seem to have already forgotten the “safe” place where I did so–no real surprise there, I suppose, given my ambivalence about her long-ago decision to bring a repeat sex-offender into the house when I was still a teenager–to be fair, I wasn’t living with her myself at the time). But I digress!

The nurse whom I spoke to on the phone also indicated that the next time I visited, the doctor advised I should indicate category 2B on the Degree of Intervention form, which would allow for mom’s hospitalization for a minor ailment (category 2A, which I had previously selected, did not allow for this possibility–goodness knows why I chose it, except that maybe at some level I was hoping to avoid a repeat of my previous errors in judgement, if any). The nurse hastened to assure me that this–the request for the 2B selection on the form–was all theoretical at this point; my mother was “fine” and did not need to go to hospital at the present time. “Vine,” I heard it.

I reached for the fruit of the vine (my only solace in these dark days), and heaved a sigh of relief. No crisis. This time. I felt the spectre of doom receding; I felt the weight (a clunky old telephone? a car battery?) being lifted from my chest. After all, it turned out, it was simply a trivial matter: 2B or not 2B.