Monday, May 19, 2008

Pooka, and Kasia Sings the Blues #2

We took our dog, Pooka, to the vet on Friday because he hadn't been eating. The vet ran blood work and confirmed that Pooka had an acute infection, for which she gave us antibiotics, but also told us he was experiencing kidney failure and had the first signs of cancer. She told us if he didn't start eating again normally by Tuesday, we should sit down as a family and have 'the talk'. But we are hopeful that with the antibiotics he will have a while longer with us. The vet conceded that he didn't seem to be in any pain as yet, though he was probably feeling nauseous. But even at 18, Pooka is surprisingly spry, and seems to enjoy that part of his day he is awake, and bounds along more like a puppy than an ancient. But the vet made it clear that the best we could hope for is a couple of months.

Tigana was with us when we got the news, and this time Mom made a point of telling Kasia before Tigana could. (Regular readers will recall that Tigana's discussion of what happened to Portia, our other dog, did not go all that well.) Kasia was initially upset, but seemed somewhat reassured when she understood that he wasn't going to die in the next day or two. Then wandered off to do other things.

With Tigana, we always know what she's thinking and feeling because she provides a constant commentary and exaggerated emotional displays -- Miss Drama Queen all the way. With Kasia, we often have no clue what is going on in there.

Lately Kasia has taken up the harmonica. I didn't even remember we owned one until I heard her playing it one day, but not like you'd expect from a four year old -- no random blowing or even random notes. Actual, well, riffs. Darn if it didn't sound half bad. I subsequently recorded her playing for her Mom for Mother's Day.

Then late Friday evening when no one else was around, Kasia picked up her harmonica and started to play:

Harmonica riff,
"Oh, my dog is going to die."
Harmonica riff
"Oh my dog is going to die."
Harmonica riff
"Makes me wanna cry."
Harmonica riff

and so on for about seven minutes until she noticed me, and then stopped went on to something else.

Now I know what Kasia is thinking, but am left with the larger puzzle. Where does this stuff come from? We never listen to the blues in our house, yet, there it is. Harmonica and all.

Can't help wondering who Kasia was in her last life.

Saturday, May 10, 2008

Mother Part I

With the passing of my brother, Doug, the care and feeding of our mother has fallen to me.

Doug went to the nursing home every day, summer and winter, blizzard or rain, to feed mother supper. He only missed four days in four years, right up until he fell ill himself. Blind and with no memory, she could neither see her supper nor remember it was there without his patiently spooning it out for her. Mother was always a slow eater, and now at 99, it routinely takes three hours to get her supper in. Her meals are all pureed, but she still has to compulsively chew each mouthful to liquid. There are frequent pauses to reheat the current course in the microwave, since the meal obviously gets cold over three hours, and reheating the food significantly increases not only her enjoyment of the meal, but also the chances of her actually eating. It all looks like baby food to me, but it is clear from looking at the trays of the other residents, most of whom do not require pureeing, that the food here is excellent; far superior to hospital food, with much less repetition in the offerings. With only three or four exceptions in four years, she has always raved about the soup; she expresses similar enthusiasm for the entrée about one day in three. Mom also loves the strawberry flavour Ensure, a liquid meal substitute, and I have found that by mixing her "Great Shake Plus" protein drink into her tea, I can usually get that in too.

Mom was extremely dependent on Doug; more so even than I think Douglas realized. Before, when I'd come up to visit, I would often go to the nursing home when Douglas wasn't there, to increase the visitor-to-hours-alone ratio for mom, but I quickly discovered that Mom wasn't the same person when Doug wasn't there. Most of the day she would sleep, or daydream, and neither the staff nor I could sustain much interaction with her. As soon as Doug showed up, however, his voice would trigger an instant rally, and she would sit up and engage with him for the duration of his visit. Of course, by definition, Douglas never saw her when he wasn't there. Douglas would talk about her good days or bad days, but the truth is, it was probably good hours and bad days, because she was never really there outside of the brief window of his suppertime visits.

Some evenings she would be lucid and have lively conversations with Doug; other evenings she would be engaged, but very confused; others she would simply sleep through the entire meal, not eating. Doug and I suspected the sleepy or confused days correlated to when she got her pain medicine renewed, but we could hardly begrudge her pain relief. Initially, Mom had more good days than bad, but increasingly Doug reported she was having more bad days than good (and that was Doug's biased sample of the 'good' part of her day, at that.) As mom declined, I eventually gave up trying to visit her when Douglas wasn't there. As even supper times became increasingly problematic, I came to see my role not so much as visiting Mom, as supporting Doug. I'd regale him with my ongoing monolog as he struggled to feed mom, and we'd get a decent visit out of it, whether or not Mom was able to participate. She was usually able to say hello and goodbye to me, but as Doug needed to sit by her good ear to feed her, she often couldn't hear me, and didn't usually remember that I was there, or who I was, without a good deal of prompting from Doug. But of course, the vast majority of days Doug was there on his own.

It must have been incredibly hard on Doug. I don't know how he managed, especially as the percentage of 'bad' days increased. Staff subsequently told me that it was not unusual for him to take until 10PM to feed her supper (which starts at 5). As mom became increasingly confused, it must have been hard to sustain conversation or find rewarding moments. (The worst was a brief period in February when Mom went completely deaf for a couple of weeks -- blind and deaf must have made trying to feed her supper very difficult and frustrating. Fortunately, her hearing partially returned in March.)

Living in Lethbridge, I can't be there every night, of course, but I have managed to get up to Edmonton for a week to ten days at a time. Whenever I'm away from home for a week, I feel guilty throwing all the parenting responsibilities onto Mary, and I miss my wife and kids horribly; but whenever I'm at home in Lethbridge, I feel guilty about abandoning my mom. There really is no way to balance that out, so we just do the best we can. (Mary is content -- and farsighted enough -- to have me role model for our kids that it is sometimes important to put others' needs first; at some point, we will want our daughters to occasionally abandon their husbands and children to come feed us supper...)

I have a great deal of confidence in the nursing home staff, who provide excellent care for my Mom. I think Doug's having been there every evening went a long way towards forging a connection with the staff, and by going up every few weeks, I've managed to maintain that positive relationship. But staff are not family, and my being there seems very important to mom. Not only don't I want her to feel abandoned, but I can provide the three hour meal service and the little touches (like extra cups of tea) that the staff's heavy workloads preclude. I cannot always get her to eat, but my batting average is better than the staff's (just because I have a longer timeframe in which to succeed).

Mother Part II

Good Days and Bad Days

I've been fortunate that most of the days I've been visiting mom have been good days. Once or twice she's known who I am, remembered my daughters and wife, and been able to hold a normal conversation. Most days she's been talkative and upbeat, but 'confused'. A couple of days have been bad, with mom either being too sleepy to eat, or too grumpy.

"Confused" is not really a fair description. The doctor diagnosed "Alzheimer's", but I do not believe that to be entirely accurate. The real problem is that mom has lost her memory, and is blind, an unfortunate combination.

Being blind, Mom has no basis on which to distinguish between dreaming and waking. Ever had that experience of waking up in a hotel or at a relative's and taking a second or two to remember that it's not your own bed? Or just that that was a dream, and now you're awake? Where the rest of us can open our eyes and look around to orient ourselves each morning, Mom has no access to accurate updates. On the contrary, her eyes insist on feeding her false images. (This is apparently fairly common among those who become blind as adults.) For several years, Doug would have to remind her that she was blind, so that whatever she was seeing wasn’t real, and Mom would go, "Oh yes, you're right." Doug would remind her that she was in the nursing home, and she would say, "Oh yes, of course!" And Mom would be able to orient herself back to the real world. As her memory has increasingly failed, however, her ability to recall that she is in a nursing home (which she has never actually seen) or even that she is blind, given that she is 'looking' at something right there right now, has also declined. So she isn't 'confused', so much as reacting to the sensory data available to her, which unfortunately is inaccurate. I am convinced, if mom could only see, she would be reminded of who and what was around her, and consequently lucid much more of the time.

As it is, however, with little to ground her in our world, she spends much of her time in her own. I often arrive to find her in animated conversation with people who aren't there; or when I ask her about her day, she'll tell me about visiting long-dead relatives in cities to which she's never been; or tell me that sitting on the plane all day has been tiring, and ask when do we expect to land? (Well, not an unreasonable question given that she spends the day in a reclining wheelchair, about as comfortable as a typical airline seat.)

Increasingly, Mom spends most of her time in 1948 -- just before or just after her father passed away -- surrounded by her friends and family. She often has tea with her mother as they sit in the kitchen after supper; or with her sister mid-afternoon. Her brothers amuse and help her; various relatives come to visit on a daily basis, especially a contingent from England who seem to be staying with them. These visits are the source of considerable enjoyment for my mother, who seems to revel in the company.

It does create a minor difficulty for me, however, in that I was born in 1951, and therefore do not yet exist in this world. When I tell her that I'm her son and here to visit with her, she looks confused and troubled. "Who did you say you were?" "I'm, Robert, your son."
She shakes her head as if to clear it, and says, "Robert? I don't have a son 'Robert'. My sons are 'Doug' and 'Ron'."

"I'm your third son."

"I only have two sons." And so on. I try to imagine what it is like for her to be sitting having tea in the backyard at her parents' home, and have some complete stranger come in and claim to be the son she hasn't borne yet. Freaky weird.

Even weirder for her is the disorientation that occurs when she falls asleep during dinner. I guess Doug was better at reading the signals, but I can't always tell when she is opening her mouth for the next spoonful, and when her mouth falls open because she's fallen asleep between chews. On one recent memorable occasion, I spooned in a nice dollop of pudding, and Mom shot up in her chair sputtering and crying out.

"What's wrong?" I shouted into her good ear.

"Um, urfph, ack" mom choked out, feeling around for a napkin. When I put it into her hand, she spit the pudding out.

"What's wrong," I asked again. "Did it taste bad? Was there something in it?"

After a moment or two mom calms down and says, "Well, no, I guess there was nothing wrong with it, really. But what was it doing in my mouth?"

"Um, I put it there?"

"You put it there?"

"It's chocolate pudding," I said. "It's good."

"Well, yes, I suppose it was. But what is it doing in my mouth?"

"Why not? It’s desert. It's supper time, and that was desert."

Mom's trademark head shake trying to make sense of what I'm saying. "But I was just getting on the train, and suddenly I had a mouthful of pudding."

She'd fallen asleep, and drifted in to a vivid dream between one mouthful and the next. Okay, again, how weird would that have to be? You're walking along the platform about to board your train, and suddenly and inexplicably, a spoonful of chocolate pudding materializes in your mouth. (Magic realism story idea in there somewhere, for sure.)

On my most recent trip, the problem of not knowing who I am was further compounded by her insistence that I was a woman. Her hearing seems to have lost the lower registers, and with the added difficulty of a slight cold that made my voice more than usually squeaky, she became convinced that she was hearing a woman. Having visualized a woman sitting next to her, it must come as something of a preposterous shock for said woman to then claim to be one's son.

It doesn't bother me. I don't really care whether she knows who I am or where she is, so long as she is happy. Her waking dreams seem to be mostly upbeat -- she often tells me she has had "a wonderful day visiting everyone" or "it's been a nice quiet day with Evie" (her sister). Got to beat sitting alone, blind and aching, in a nursing home.

Mother Part III

A Bad Day

The worst visit to Mom's nursing home for me this week was so bad that it's the stuff of black comedy.

As I arrived, the woman from the adjoining room waved me over. I hadn't seen her on this trip so far, but she had in the past often given me very helpful updates on my Mom. "Hello, [name deleted]," I said.

"Hello," she greeted me with her raspy voice. "Could you help me?"

"Of course," I said, "What can I do for you?"

"I'd like to die, now. Could you kill me?"


"You have to hurry, though, before the staff come back."

The evening went steadily downhill from there...

The aid who brought my mother's supper tray told me that Mom hadn't eaten or drunk anything all day. The pressure was therefore on for me to get something into her.

Mom took two sips of soup, and then carefully held out the cup at arm's length. Thinking that she was aiming for her tray table, though way off the mark, I attempted to intercept it. This provokes a very hostile reaction. "What do you think you're playing at! Let go!"

"Oh, sorry. I thought you were looking for the tray table."

Mom gives me a disgusted expression as if I am a total moron, and says, "I was passing it to Evie, as you could see plainly see. What did you think you were doing, ripping it out of her hand like that?" and proceeds to stretch her arm out once again. Where the cup hovers precariously, and begins to tip onto the floor. I again attempt to catch the falling cup, and mom again goes ballistic at my interference. "What is wrong with you? This is completely unacceptable behaviour! It is not appropriate to grab my cup out of my very hand. If you interfere with us again, I shall have to ask you to leave." And again proffers the cup to her long dead sister.

"Evie's not here," I say. "This is your soup, and you need to drink it."

Again, Mom tilts her head and takes on this look of complete incredulity that anyone could have the gall to maintain something so patently absurd. "What do you mean 'Evie's not here?' She's sitting right there. You can see her," [Points] "on that wicker chair right there. That's Evie! Now stop being so rude!" And so on.

Eventually I give up arguing with her over who's there -- because, truth be told, I'm not absolutely positive that just because I and the staff can't see or hear them, that mom's family aren't in fact sitting around visiting her. Mom's not only completely convinced, she's convincing. I'm not sure whether I find this creepy or reassuring, but there is a long tradition in our culture that those on the other side sometimes crowd 'round to welcome you to the next world. Fair enough, if spending time with her family helps her with the transition.

But on this particular evening, Mom refused to eat at all. "I've already eaten, thank you. I had two great big buns, and a huge bowl of soup, and turkey, and desert, and there is simply no way I could take another bite." When I pointed out that they had just brought her meal and it was sitting untouched on the tray table in front of her, I was again on the receiving end of that disgusted look that I was contradicting not only her but the obvious facts sitting in plain sight. "You can see my empty plate right there! I had these two great big buns, and--"

"Mom, they don't serve buns here. You haven't had a bun in four years."

"How would you know? You weren't here when I was eating them." And so on. Again, the facts as I know them are in direct contradiction of the facts of which she is equally sure. She has eaten a huge meal with her family, and is now sitting having a quiet cup of tea, and what am I on about?

In the end I had to go home with nothing concrete to show for my visit, except for my own grieving: seems to me, if she is not only spending all her days visiting beyond the veil, but now taking her meals there as well, it may not be long before she moves there permanently.