I'm Sorry

I am sorry if I have failed you in any way.

I am sorry I might not be able to keep this up. I had thought that when you reached this point of sleeping and being bedridden all day, it would be easier. In many ways it is, of course. You are too weak so I'm no longer having to chase you as you escape down the road. But it is quiet and lonely in the house with you tucked away needing so little. Some of your physical care is more onerous; transferring you to and from the wheelchair the few times you want to get up is more difficult with your extreme weakness and unsteadiness. But I do look forward to the new daily rituals of sponge baths and meals-on-a-tray, sometimes our only real interaction now. I spend much of each evening in the rocking chair at the bottom of your bed while you drift off to sleep. You need me there to calm you but I need to be nearby too, listening for steady breathing, not wanting to be completely alone.

I am sorry that decisions made about your medications might be better for me than for you. Your psychosis and anxiety were overwhelming both of us, rendering you paradoxically more mobile and alert in exaggerated fight-or-flight response. That is a bad combination with the weakness and instability you now suffer - your falls have become dangerous - so I have essentially strait-jacketed you with a reduction in the Parkinson's medications. That has been a relief on two counts: you are more clear-headed on fewer drugs and you are less mobile and unpredictable in your behaviour. The occasional need for anti-anxiety medication has made you sleepier. During the two weeks when you were so terribly ill and unable to take many of your pills even in crushed form, I felt the burden of this job most acutely. Every day I was having to make hasty decisions about your medications, usually alone and without support: If you can only swallow one pill, which one do I choose? I felt as though we were crossing a ravine on a tightrope and I had more than a few panic attacks. These are powerful drugs, not to be treated in a cavalier manner. But we do seem to have achieved a modicum of mental stability; the adjustments are working well, for now.

I am sorry for the times I might have been irritable and harsh, frustrated and even angry as I have traveled through a minefield of emotions. You always look back at me benignly and calmly. Your tone, when you can articulate anything at all, is courteous and gentle. It is only if you are in the midst of a psychotic melt-down that you might rise up with any strong emotion but I am never hurt by those infrequent outbursts. I know they are only you stuck in a waking nightmare where you have no control. I, on the other hand, have no such excuse.

I am sorry that I cannot always read your signals or understand your words which are usually inaudible or completely nonsensical. You have difficulty expressing anything now so I limit my questions to those that can be answered with a simple yes-no response. Even those are sometimes beyond your capability so I am left to guess, often incorrectly, when even your body language is shutting down. I am trying so very hard to tempt you with foods you might enjoy to help you regain the weight you lost on your two week near-starvation diet; you refuse most things except a few favourites. When I list the foods I think you might like, you often stare back at me blankly. When I repeat the list you then might blurt out a yes to a food on offer. I must remember you often take a while to process the information I am giving you. I must be quiet and slow and patient.

I am sorry that I am so well and you are so ill. Is this what is known as survivor's guilt? I have worked hard to remain fit and strong just so I can have the energy to manage your care with all the associated heavy lifting. Alas I feel badly that I only seem to get stronger through all of this as you become weaker. 

I am sorry if decisions to keep you at home have been wrong. In my heart it feels right but I would like to have been able to consult with you on all of this before it was too late. All you ever said on the subject when you could still form such thoughts was that you never wanted to be like this, so utterly dependent. You have been gone a long time now so I've been left to make all decisions on my own for many years. That has been both empowering and lonely.

I am sorry that when the end finally comes I will probably feel a crazy mix of grief and relief. I know I will feel lost without your constant presence. I have been caring for you intensively for nearly four years, but you have been home full-time and very ill for ten. It is hard to imagine being able to make decisions freely without consideration of anyone but myself. I am sorry that I even find myself thinking of a life beyond all of this and especially for the small thrill beneath the terror that I feel at the prospect.


*Saints Kings Church, Venustiano Carranza, Mexico: Stained glass windows Sun, Alpha Omega