What Next?

Friday night we were settling into a weekend of family.  One offspring was home from Montreal and another was returning very late at night from a three week vacation.  The other two were only able to pay phone and skype visits.

It had not been a particularly dramatic week for Michael despite some anxiety over the bedsore that had developed a few days earlier. And that was only when the nurse visited after I thought it prudent to alert the medical staff of its existence at least. I had already gotten treatment under control but somehow the presence of medical people always raises his anxiety levels no matter how minor the problem - the main reason I hesitate to include them unless absolutely necessary and I'm not sure why I did this time.  I suppose it was a moment of doubt that crept in when I read about pressure sores online and the advice was categorically to alert a health professional.

In fact, the week had been rather positive despite that slightly rocky beginning.  After all, Michael outdid himself mowing the lawn on Thursday and repeated the performance on Friday for about five minutes, albeit with frequent falls. On both occasions he came in exhausted and drenched in sweat.  Michael, who used to love the sun and would tan to a beautiful mahogany-brown every summer, has become terribly sensitive to the heat now, a function of some of his Parkinson's medications. Profuse sweating is a common problem he suffers in the full sun, so really I shouldn't allow him too much exposure at all.  But he does still love it and it's hard to deny him the pleasure of rare Canadian heat.

Perhaps he was dehydrated on Friday night.  I don't know. I was rather preoccupied and happy about the arrival of our kids and was probably not paying much attention to whether he rehydrated sufficiently or not after his exertions.  Not long after our first child arrived home late in the evening, I became aware that he was spending a lot of time in the bathroom. Whenever that happens I barge in on him, denying him any privacy in that department.  That night he was perched on a stool I keep in there for his use in the shower.  He was inspecting himself rather carefully and anxiously.  When I asked him what was wrong he showed me bright red blood in the toilet, obviously produced during urination and, from what I could tell, it had followed his pee, not preceded it, resting on the bowl of the toilet above the water line.  He was understandably alarmed. My first thought was that he was on the brink of another urinary tract infection like the one that had caused so much trouble back in September.  I asked him all the usual questions: Is there pain on urination? No. Is there any pain in your pelvis? No. I checked his temperature and blood pressure but both were normal.  I felt his pelvis and his back around his kidneys for pain, thinking that he might have a kidney infection or another stone, something I hoped he'd never have to experience again after an agonizing attack several years ago. But there was obviously no pain.  Hmmmm. What could it be?

Thinking that dehydration could somehow be the culprit, I forced him to drink two tall glasses of water on the spot.  What was puzzling was that normally in the evening he is trotting back and forth to the washroom several times an hour. Fortunately he only has a few paces to travel each time with his specially equipped washroom right next to the living room. But after all that water, he didn't produce any urine for over an hour and had become rather distended in the pelvis.

When urination finally resumed I watched closely. Yes, still a fair bit of blood but still no burning or pain anywhere.  The blood was obviously following the urination process and was even staining his daytime protective underwear.  He was so alarmed I had to stop him from pulling down his pants to inspect himself while sitting on the couch.  There are a few things I try not to expose the kids to.

I have a very old book, simply entitled  "Symptoms" by Dr. Isadore Rosenfeld, that has helped over the years to calm my nerves when faced with various ailments and odd symptoms displayed by family members.  I pulled it out and consulted the section on blood in the urine.  It indicated that any bloody urine should be reported, and that painless and post urination blood might be nothing other than a mild UTI or the result of an injury (perhaps incurred during one of his many falls that afternoon). Or it could be an indicator of something more serious.  In any case, I realized I'd better make a call.

It was now fairly late but I have learned that the special number I have been given for medical support of my home care patient will connect me with a sympathetic nurse at any time of the day or night.  Michael's file is immediately available to the on call nurse, so after she had consulted it she felt that, with no other symptoms, I could probably relax and do a reassessment in the morning, calling again if necessary.  I felt comfortable enough to let it go for the night, not wanting to add to Michael's anxiety.  I reassured him it was probably nothing and hustled him off to bed, needing, however, to give him extra anti-anxiety medication and extend our prayer time to calm him. He had a night of noisy breathing but was otherwise quiet once he finally relaxed.

The next morning he had mercifully forgotten all about the incident.  There was no further blood and there hasn't been any since, at least nothing visible. There could, of course, be microscopic blood present. After reading in my book about one of the more alarming possibilities, I hit the computer to do more research on bladder cancer which is often pain-free and can show frank bleeding following urination.  All the other possible symptoms are present too but are misleading because he has displayed frequency of urination and low pressure for years, common symptoms of Parkinson's disease. Colour change of his urine is not a reliable indicator of anything either since his medications are responsible for a rather alarming array of urine hues. He has never been a smoker, at least not for any extended period and not for over thirty years, so he is not in the highest risk category for this disease, but he is male, which makes him several times more susceptible than a female the same age. There could also be prostate trouble.

With all this in mind, I finally called the visiting nurse today, now Wednesday, and left a message requesting a urinalysis which, I believe, may only show if there is infection and blood present, not if there is cancer lurking.  That, from what I understand, would require a whole raft of tests that I shudder to even read about let alone pursue, given my poor husband's sensitivity to all things hospital related. I have yet to hear back from her.

But I am getting way ahead of myself imagining the worst case scenario even though, in the past, I have found it to be a very useful strategy to prepare myself for terrible things.  In my experience, often those dreadful things come to pass so having imagined them first has helped me to cope. Last night I asked Michael a hypothetical question:  If he were ever diagnosed with a life threatening disease like cancer, would he want me to pursue all possible treatments for him or not. I'm not sure whether his silence on the matter indicated a refusal to talk about it or an inability to absorb and process the question, but that silence is leaving me, once again, to guess and do the best I can on the bumpy road ahead.

Just when you thought...

Michael never ceases to amaze me.

This week I was preparing for yet another dip into calamity. There was the pressure sore, of course, which has been duly treated and seems to be improving with careful attention. Michael also seemed more distracted, more lethargic, more delusional than he has been in a few months.  He seems to have been hallucinating mildly, in the evenings especially, and has done some pretty odd things.  Today I came home to an apologetic caregiver who explained that, on receiving this week's issue of the local rag, Michael felt compelled to tear it into individual sheets which lay muddled all over the table. I did manage to piece it together somewhat. In truth it made an otherwise fairly mediocre paper into a slightly more interesting and challenging read.

The weather has been enough to make anyone slightly squirrelly with non-stop rain for over a week, cold temperatures and general low pressure making everyone feel draggy, me included. But today, summer suddenly arrived at about three pm. It was hot, sunny and muggy, perfect for my annual visit to the garden store to buy my bedding plants. On returning home with my tiny car full of soil and flats of flowers, I saw Michael and his caregiver basking in the sun on our front deck. Michael was dressed in his rubber boots, ready for some action apparently.  As I unloaded the car he rushed over to the shed and started hauling stuff out.  It became clear he wanted the lawn mower.

Now, we own two lawn machines, both gas-powered and terrible polluters for the hypocritical environmentalist.  One is a lawn tractor Dad bought for us just before he died, concerned that the lawn would become too much for my ailing husband. His intention was that our then eleven-year-old son would take over lawn duty with a fancy new machine to drive.  He was right.  William would tear around the place at high speed, putting life and limb in peril, but the lawn always got mowed. Everyone just took cover when William was at the wheel.

The other is a simple gas push mower for the more delicate work.  Not that any of our dandelion-strewn lawn is the least bit delicate. William paid for most of that machine himself and used it for a few years for his small yard work business.

After Michael nearly asphyxiated himself a year ago while "repairing" the tractor in the closed shed, I have hidden the key.  He is only allowed to use the push mower which, most days, is far too challenging for him to operate. The forward pitch he must maintain while pushing the mower makes him fall almost every other step, making the ordeal a very painful one to watch.  Since he barely got off the couch all winter and has been falling constantly lately, I was sure the mower would remain untouched this year.

Our acre of land has a lot of trees and a beautiful meadow that was Michael's pride and joy for years, filled with native plants and grasses, and visited by butterflies and birds all summer long.  Michael let this corner of our lot grow to minimize the mowing we must do.  He carefully mowed paths through the meadow making it a haven for small children seeking a hiding spot and deer looking to rest. It is my favourite part of the yard. I call it Michael's Meadow and it will never come down as long as I live here.

But there still remains a lot of grass to mow.  After a week of non-stop rain, the grass - which is mostly crabgrass and weeds, but very green - was thick and tall.  Last year I hired a fellow to cut the grass for me, hoping this arrangement would prevent Michael from attempting it himself, but with all the rain, our lawn man hasn't paid us a visit yet this year. Enter Michael.

Out came the push mower, and a "discussion" ensued once again about why he cannot use the tractor. With some annoyance he started up the other and set off.  Deep breath. This won't last long, I assured myself. Sure enough the mower spluttered to a stop a few minutes later and Michael took a breather.  His lower back always gets very sore whenever he is upright, his muscles are so weakened.  I found him crouching. But he got himself up and set off again, falling every few paces and making me wince. The stop and start of the mower continued for several minutes. I disappeared into the house and made myself a calming cup of tea, knowing that I would not be able to divert my determined husband from his task.

From the porch where I had retreated, I realized I was hearing a steady roar from the engine, with no punctuating stops. I peeked around the side of the house.  There he was, labouring intensively, but making great headway up and down the flat stretch at the back of the house.  At one point I hid my eyes as he bee-lined for my garden.  There was some loud crunching as he hit dirt but, on later inspection, there was mercifully little damage.  He even managed straight and methodical lines, unlike his usual approach which is rather free-form, criss-crossing, confusing paths.  What was so surprising was that once he got warmed up, he hardly fell at all.  There was the occasional stop for a rest and I would find him sitting happily amid the dandelions accompanied by a playful dog. Then he'd pick himself up and set off again.  In the end he was not able to complete more than a fraction of our huge lawn but what he did manage was well done, apart from one wide swath cut through my beloved meadow. Finally his medication ran out and he struggled to get into the house before he collapsed completely.

He was drenched in sweat, a tired but happy mower.

Nitty Gritty

Bedsores. The new reality. Michael is not completely bedridden so the single sore took me by surprise yesterday, but I suppose he now spends so much time in bed or reclining on the couch that it should have been expected.

Bedsores are caused by immobility and continued pressure on one spot for several hours.  Blood circulation is impaired, so the skin is not being nourished and starts to break down.  Fortunately, this single butterfly-shaped red sore at the bottom of his tail bone is only a day or two old and, from what I have read, is only at stage one, meaning there is no broken skin, no suppuration. With vigilance I am hoping we can clear it up.

Michael spends at least nine hours locked in one position all night. His preferred position is on his back, with the hospital bed slightly raised at the head and at the knees.  Movement is impossible once his last dose of Parkinson's medication has worn off, usually long before midnight, so there he must stay.  Lying on his side is less comfortable but it also poses problems with the diaper he must wear every night.  Michael is completely incontinent now, at least he is through the night, so lying on his side leads to far more leakage onto the bed, far more discomfort by morning.  I have a collection of large square cotton bed pads; one covers his bed sheet every night and takes most of the excess moisture that the ultra-absorbent adult diapers do not retain. These pads are gortex-lined on the bottom, rendering them impermeable. There is always laundry every morning but at least with these pads, usually the rest of the bedding is left dry. Occasionally there is a deluge.

Back to the bedsores.  For now, I won't try to change his position at night, but during the day I will try to keep him off his backside as much as possible.  This will mean that when he wants to recline to watch television, I will try to have him on his side, not his back, and try to get him up moving more often throughout the day. Anything that will take the pressure off that spot. Friends have recommended a mixture of aloe vera and vitamin E which I will try if this first approach is unsuccessful.  This morning I placed a memory foam overlay I had lying around onto his mattress, hoping that will relieve some of the pressure. I will also consider waking up once in the night to turn him if necessary but that will be a last resort only. Sleep is too valuable at the moment for both of us.

If someone had asked me ten years ago if I could ever deal with my husband in diapers, I most probably would have said no, but it is remarkable what you can get used to. It doesn't bother me but it is probably the most significant factor in my distancing myself from my husband physically. Our relationship has become one of simple affection.

My biggest concern with the diapers was not the aversion factor but the environmental one. For all four of my children I was dedicated to the use of cloth diapers exclusively. On the rare occasion I used a disposable one for travelling, I felt that I, personally, was responsible for all environmental disaster. In fact, for short trips, I was known to carry along lots of plastic bags to store the rinsed out soiled diapers until I could return home to wash them. A bit extreme, I know.  It wasn't just the use of an unrecyclable paper product that bothered me but also the disposal of human waste that should have gone into a sewer but was ending up in a landfill, despite every effort I made to remove solid matter.

But with an incontinent adult, using cloth diapers is really not an option.  With my children, their use arguably hastened toilet training (anything to get out of those soggy, heavy messes); with an adult, comfort is the most important consideration, and the amount of cloth that must be used to stem the flow of an incontinent adult male would be more than uncomfortable.  The one consolation is that the technology has advanced to the point where thinner and thinner diapers are holding more and more fluid. The same can be said for infant diapers too, so I suppose the impact on the environment has been diminished somewhat.  I still shudder at the thought of all that human waste being dumped into landfills, though. Surely we have advanced further than that as a society. It seems ironic to me that we have perhaps the most advanced plumbing systems we've ever seen and are so preoccupied with hygiene and the spread of disease, especially in public washrooms, yet we are so cavalier about our disposal of that kind of waste that has the unfathomable potential to spread disease into our soil and water systems.  But I'll get off my high horse now.

As this disease marches on, indeed as any of us progress toward our earthly end, I am struck by the circle of life, how much my husband has returned to a childlike state: diapers, unstable gait, inability to articulate his needs, teeth falling out, an inability to dress himself, a complete childlike egocentricity where his needs are paramount. I saw it with my parents and my father-in-law, and my niece probably saw it in my sister in the months before her death.  It is a sobering inevitability for most of us.

Methinks Shakespeare said it more eloquently than I:

All the world's a stage,
And all the men and women merely players:
They have their exits and their entrances;
And one man in his time plays many parts,
His acts being seven ages. At first the infant,
Mewling and puking in the nurse's arms.
And then the whining school-boy, with his satchel
And shining morning face, creeping like snail
Unwillingly to school. And then the lover,
Sighing like furnace, with a woeful ballad
Made to his mistress' eyebrow. Then a soldier,
Full of strange oaths and bearded like the pard,
Jealous in honour, sudden and quick in quarrel,
Seeking the bubble reputation
Even in the cannon's mouth. And then the justice,
In fair round belly with good capon lined,
With eyes severe and beard of formal cut,
Full of wise saws and modern instances;
And so he plays his part. The sixth age shifts
Into the lean and slipper'd pantaloon,
With spectacles on nose and pouch on side,
His youthful hose, well saved, a world too wide
For his shrunk shank; and his big manly voice,
Turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.


-"As You Like It", Act II, Scene VII.

Passion

One of the biggest challenges of this job of full time caregiving is staying balanced and content. The constant repetitions of each day, the isolation, the stress of being on high alert at all times take their toll. On the whole, I manage the balance fairly well and can actually report that most days I am content, even happy.

But there are days when life overwhelms, not often but occasionally. The meltdowns are usually short-lived for me, thank goodness,  and cathartic, allowing me to press my reset button and face the monotony again.  Or a simple call from a friend or family member is enough to jolt me out of my morass for a few more days.

Recently, though, a connection of another sort occurred that has gotten under my skin and is chafing. Long lost unrequited relationships sometimes surface that trigger memories and longings that I have mostly been successful in suppressing. But this one has uncovered feelings and yearnings I have kept well hidden over the past few years of intensive caregiving.

I have always described myself as a person without definite passions.  I've often thought that perhaps I suffer from anhedonia . But that is defined as a mental disorder, one where the sufferer no longer finds pleasure in previously enjoyed activities, not what I am.  No, I take simple pleasure from simple things: a prayerful walk in the forest alone save the company of my dogs; watching my garden spring forth every year; my children; my friends; my volunteer work. I have, of course, loved my husband, sometimes very passionately, and still do, though the passion is sadly long gone.   Something must die when a spouse must cross that line from lover to nurse (despite male fantasies to the contrary), and, with a chronic, severe degenerative disease like PD/dementia, there is no turning back, at least, not for me. Sometimes I think I am better suited than most for this job because I do lack passion for many of those external things like hobbies and causes. I don't feel I am missing much and on the whole I am a contented homebody.

I am not ready to give up my job as caregiver, as onerous as it is, but I am realizing that a life without passion is a sad one.  I wish I could abandon myself in a hobby that might fulfill me if I only had the freedom for such things.  But there is still this chafing yearning that will not go away, a reminder that I am, after all, human with all my physical needs calling out to be met.  A cruel joke that is keeping me awake at night. A spiritual life is helpful but only an occasional panacea.

My solution is to engage in time travel and fantasy. In the case of time travel, I am able to lose myself in memories of my husband in better times, when he was well, fit and amorous. It is a useful strategy and gets me through lonely times just imagining his comforting, protective arm around me in the night. But I am now the Protector so the illusion quickly vanishes, leaving only the yearning. It is merely a ghost of the past.

Fantasy, on the other hand, offers the promise of future, though a rather hollow promise at that.  It works for a while but, again, is only an illusion that vanishes perhaps even more quickly than the other because there is no past memory to fuel it. It is a chimera. It is less satisfying, perhaps even destructive, because it does leave the longing with nothing tangible in its wake. The time travel indulgence at least still has all the fine material products of that relationship before me as a reminder that it was real.