Breakfast with the Mad Hatter

Michael was once an epicure, not only enjoying a fine bottle of wine and a sumptuous meal, but also no slouch in the kitchen. When I met him he even had a subscription to a magazine dedicated to fine cuisine. My own cooking style leans toward the staples: casseroles, whole foods, child-friendly meals. His cookbook of choice: "The Playboy Gourmet" (with no reflection on his sexual proclivities). Mine: "Whole Foods for the Whole Family" published by the La Leche League, and "Diet For a Small Planet", the hippie cooking bible of the '70's. Worlds apart, as you can see, but it made for great variety in our early days of eating together, each of us appreciating the other's style...usually.

I'm not sure if this is common in all cases of dementia but with Michael I have seen an enormous change in his tastes. A big part of my job is to ensure he has a nutritious diet that pays special attention to his numerous issues: lots of fibre for the ever-so-sluggish bowels, and careful amounts of fats and salt for his heart condition. There is also a need to pump the fluids, sometimes a challenge with a man whose beverage of choice used to be coke or ginger beer, never water.

Mealtime for Michael is haphazard. Sometimes he is well enough to eat, sometimes not. There are periods of time, during a prolonged episode of mania and psychosis, when he will not eat, at least not very much. Severe bouts of constipation can also interfere with his appetite. This is when I must focus on getting calories alone into him without paying as much attention to quality. At these times he seems to revert to what I call kid food: cans of Chef Boyardee Ravioli, peanut butter sandwiches, small yogurt cups, porridge, hot dogs, pepperoni sticks, pizza, tuna casserole.  If I had the energy to create the kind of gourmet meal he used to enjoy, maybe he'd actually eat it. We'll never know. Instead, because of my own recent dietary restrictions, I've been producing a lot of hearty soups and low fat delicacies, none of which are at all appealing to him. And vegetables? The closest he gets to that these days comes in a jar or bottle to go on top of his hot dog. Colour, yes. Nutrition, not so much.

Then there are the days when he forgets how to feed himself. Not frequent - yet - but difficult when it happens. I must step in and spoon-feed him, or, at the very least, cut up his food and demonstrate how to feed himself.

But today there was a new wrinkle. On serving him his scrambled eggs and raisin toast, he pushed himself away from the table. When I asked what he needed, he announced, "Ketchup." Michael has never had ketchup on his scrambled eggs, I quickly reminded him, but he was adamant. Okay, ketchup it is. When he got it into his hands he started to squirt it over everything, including the sweet toast. I don't know why I bothered but I let out a little shriek to stop him (as if it really matters that he wants ketchup on his toast). He looked at me defiantly and articulated as clearly as the Mad Hatter, "But I've always eaten my toast with ketchup."

Hard to argue with that logic. For the record: He ate all his breakfast and even added more ketchup to his toast before he was finished.

* John Tenniel's illustration from Lewis Carroll's, "Alice's Adventures in Wonderland", 1865.

The Holiday is Over

It's three weeks this Thursday since my surgery and I'll be declaring the holiday over when I see my surgeon tomorrow. I won't go so far as to say it's been fun but it has been a change. And what is it they say about the connection between change and rest?That adage certainly applies in this case. At the very least, it is a holiday that makes me happy to be back.

I recovered remarkably quickly despite a rocky few days of unusual and worrying, post-operative, abdominal pain. I figured out the cause (too much Ibuprofen) after fearing it was some horrible complication of surgery. But the silver lining of that cloud was that I needed more back-up at home for longer than I had anticipated, so I had to call upon my children after my caregiver and then my fantastic brother had competently covered the first few days. My daughter, who is expecting our first grandchild in May and whom I hadn't expected to see at all during this pregnancy, came home for five days. She relieved our son who had done a two-day-long shift. Neither of these children had we seen over Christmas so their presence felt like a belated gift.

In the first few days, I had people completely taking over Michael's care while I languished (and writhed in pain and vomited). By the time our daughter arrived I was well on the way to recovery, requiring only an afternoon nap to get through the day, so I had plenty of time to spend with her. I read books, slept when I needed to, enjoyed not having to cook, chatted over steaming mugs of tea. I wasn't allowed to engage in my usual energetic, strength-building workouts so I indulged in guilt-free laziness. I have even started to regain some of that weight I lost during and between my visits to the Hull Spa and Weight-Loss Clinic, also known as the Hull Hospital. Even after we were back to a fairly normal routine, I refused to do housework beyond cooking and laundry, the two most necessary tasks. The snow even held off until I was strong enough to tackle a shovel this past weekend. The mounds of dog hair rolling like tumbleweed through the house are tauntingly calling out to be vacuumed up but I have ignored them until now. This week I will show no mercy and will enjoy that task, a sure sign that I'm back from my holiday.

Michael held up well during the ten days of my convalescence and house guests. The night after the last one had left and we were finally alone in the house together, he had his characteristic manic melt-down. But it was short-lived and tolerable since my strength had nearly fully returned. Besides, I had declared that I was still "on vacation" so the afternoons were spent sprawled out on the couch with both of us snoozing with one eye on the television. My sister-in-law had loaned me three seasons of the award-winning television series "Sons of Anarchy". I have a fascination for aberrant, criminal behaviour and I found myself quickly addicted, justifying many hours of guilty, pleasurable indulgence as a necessary part of my convalescence. I'm not sure staying up all alone until one a.m., stuffing my face with previously forbidden potato chips, in front of hours of murder and mayhem, would be described as the ideal convalescence but I was on holiday so I didn't care - even when Michael had a psychotic episode that same night, allowing maybe only three hours of sleep. I knew I could just cancel life the next day if I had to. I was overcome by a strange insouciance. 

As is his way, his condition is now belatedly worsening as if somehow he recognizes that I'm fully recovered and now able to deal with his collapse. Will it be another long descent into his special Hell this time? I don't know. Signs are pointing to it being an especially harsh journey but he has pulled through long, bad ones before. It's okay, though. I am no longer worried about my own health and I'm ready to take it on. We made it through that difficult hurdle. We'll make it through whatever else is in store for us.

I'm back.


*Zuleika, John Singer Sargent, 1906

A Clozaril Christmas and New Year Predictions

2013 has arrived. It is more than three years that I have been providing intensive care to my husband, mostly alone. It is astonishing to me that we are still at this. Michael's resilience seems to be unshakeable. 

I have long given up anticipating (hoping for?) dire things whenever his condition changes. My hospitalization two months ago did affect him hugely, creating all the problems I predicted, namely increased psychosis and confusion. His overall physical health, however, does not ever seem to be harmed, only his mind. He is oblivious to the challenges these psychiatric changes bring, mercifully. It is up to me to shoulder these problems.

Since my last post, Michael's psychosis increased so badly that an emergency visit to the neurologist was in order just two weeks before Christmas. His anxiety was keeping him awake and active in the night and was untouched by the usual anti-anxiety medications. Hallucinations were becoming a daily experience and delusional behaviour meant there were days when I could barely leave his side for fear he would hurt himself, endanger us or suddenly decide to rush outside into the harsh winter conditions. A curious aspect of this disease is that when confusion is extreme he can no longer understand the workings of a toilet, resulting in many accidents on the bathroom floor if I am not paying very close attention. The problem for me with this mysterious confusion is that it is in no way consistent; he will have many days when he can be left alone to manage in the bathroom but then there will be without warning a moment when he suddenly forgets. I become complacent during the more lucid moments not paying the close attention that is needed for the confused times. This is unfortunate because I have been speaking to him harshly and with frustration when I have a large mess to clean up. 

Michael's neurologist prescribed an increase of Clozaril, the anti-psychotic medication Michael has been using for over three years. He has been on a relatively low dose so the gradual doubling of this powerful and dangerous drug seemed the most logical approach to this escalating problem. The doctor informed me that the anti-anxiety medications with which I was having so little success this time could actually increase the psychosis. He also told me another curious aspect of psychosis after I had reported the more severe falls Michael was experiencing with little or no pain: Apparently deep psychosis can heighten a person's pain threshold, protecting him from the pain that would otherwise flatten the rest of us. Being constantly in a state of fight or flight, though posing long-term dangers to the heart, at least has some benefits.

The effects of the gradual drug increase were noticed immediately. Though the ability of this drug to clear the mind of psychosis can take a few weeks, at least the soporific effects were felt immediately, giving me a reprieve from what had become a fairly constant vigil. I was hopeful that he might settle down by Christmastime. There were also brief moments of complete lucidity with the old Michael shining through, startling me with his intelligence and humour. The drug seemed to be working.

Christmas was to be a relatively quiet affair for us with only two children home. We were planning our usual Christmas meal at home with extended family, this time on Christmas Eve for a change with many of the invitees returning on Christmas afternoon for leftovers and games. It was fun, just the tonic I needed to help me through the loneliness of this job. But Michael fared very poorly despite the increased Clozaril.

For the week that there were extra people in the house, his activity level once again increased and his hallucinations were obvious to everyone as he swatted his slipper at unseen vermin and crawled on the floor picking up invisible objects. During a spirited card game of Spoons where every player must grab a spoon (or pencil in our version) at the appropriate time, Michael, who was not participating in the game itself but was seated with us at the table, suddenly grabbed the pencil that a young guest had also reached out to claim. Our poor guest looked surprised especially since Michael had no intention of relinquishing the pencil. For some reason I found this so funny that it took me several minutes before I could gather myself together to resume the game. On another occasion, during a relatively quiet visit with his elderly mother, Michael was scooping chip dip with his hands and placing his orange peel into people's tea. His poor mother's alarm was visible; I don't think she has ever seen his dementia so obvious. Our daughters, on the other hand, calmly guided Daddy's hands away from the dip and quietly picked the orange peel out of their teacups, all without fanfare. 

We are a day away from my laparoscopic surgery to remove my gallbladder if my mild cold does not derail these plans. If all goes as it should, I will be gone only about ten hours, if that, and will return home in the evening, our caregiver here overnight to care for both of us.  I am not worried for myself but I am fairly certain of one thing: this is not likely to be tolerated calmly by Michael no matter how well he manages in the short-term while I am convalescing. All past experience points to major disruption.

I can safely predict that 2013 will bring us more of the same: more psychosis, more confusion, more anxiety, more chaos in Michael's addled brain, more isolation. Of my own health and resilience I am less certain. Since it will likely be another year of no change in our situation I must think of more strategies of endurance that do not adversely affect what little stability we might achieve with Michael's mental health. 

My New Year's resolution is simply to get by.

*Icon Labirinth (sic) of the Soul (Russia).