Little things matter

more than you know

Yesterday felt like we reached a new step in the full-time, at home, care of my mother with Alzheimers.  Over the past year she has steadily declined, becoming a fraction of her former self physically and losing her memory of people, places and events.  She remembers me still, but not the names of her grandchildren, though she recognises them as familiar people. 

Trying to get up out of her chair yesterday, I noticed how much difficulty she was having.  She usually forgets that she is trying to stand up and will lean forward as if to stand and then sit back and cross her legs again.  I have to remind her several times that she was just about to get up.  There is always somebody next to her to help just in case.  She slowly puts her hands to the edge of the arm rests on both sides and presses down as hard as she can as if to will her body upwards.  

But yesterday she not only couldn’t make it to standing position, but as we supported her on both sides, it was as though she had forgotten what it meant to stand.  She was physically unable to hold herself up, let alone try to walk.  We stood with her some minutes but were unable to let go until, after a time, she steadied.  Then she froze and seemingly forgot for a few moments how to walk.  Once she had her cane in her hand she inched forward, shuffling her feet along the floor, head down.

This issue of walking with her head looking to the ground stems from a fear of falling. She must imagine that if she keeps looking at her feet, she will be safe. Encouraged to stand tall, head up, back straight, she shifts her position for a moment and then reverts to watching her feet.  It takes forever to get to the toilet, as she stalls at each door on the way, waiting for direction. Am I meant to be going here? No that’s the basement.  How about here? No that’s your bedroom.

Finally at the toilet she enters, remembering to place her cane in the corner.  Stopping. What to do next?  Most of the time she remembers that she has to remove her pants before sitting, but she dislikes the cold of the seat on her bottom and sometimes doesn’t want to allow her trousers to fall to the ground.  So she might say that she has already been to the toilet and wants to leave before she has had the chance to sit. 

I have noticed how each stage of her illness requires some adjustment on my part.  What seemed unthinkable just a few weeks ago is now part of the daily routine.  I no longer shudder or get irritated when my mother has failed to clean herself properly.  I just put on two pairs of blue surgical gloves and do the job expediently and with as little fuss as possible.  I have had a hand bidet fitted in the toilet for this purpose, though my mother complains about the gushing water against her buttocks and swears.

Coming from a typical East End family of people who swear, my mother blames her sisters on the fact that she swears.  She recalls her oldest sister Lizzie, who died a decade ago, aged 90. Long, dyed blond hair, chain smoker, living in a flat in the East End, Lizzie liked to bet on the horses and wouldn’t eat ‘foreign’ food like spaghetti or rice.  My mother nowadays prefers potatoes to rice or pasta, despite having been an amazing and adventurous cook who would watch cookery programmes on TV for exotic recipes.  She learnt how to make Chinese food from my father and would make a veritable Chinese feast for Boxing Day every year.

Better days - mum and Lizzie

It is easy to see how vulnerable people can be neglected, even abused.  So fragile, we must watch our innate tendencies to want to control or exert power very carefully when we are in caring positions or when we work with marginalised and disadvantaged groups. This need to be vigilant is greatly increased when we are around those unable to speak up due to impaired mental capacities, as well as those who are held to ransom by systems and institutions and professionals on whom they depend, sometimes literally for their lives and livelihoods.

Working with refugees for almost two decades and spending thousands of hours with them during that time and whilst writing my PhD dissertation, it became clear that those in power easily abuse their positions: in small and big ways.  In the prison where I worked as a prison chaplain it was so obvious that power dynamics were always at play.  I could see that those at the bottom of the institutional hierarchy and in the closest contact with the prisoners made their power known by either ignoring requests, or keeping people waiting for unnecessary amounts of time.

I recall a time when a young prisoner was in agonising pain with toothache.  He had to wait until the late afternoon medicine round in order to get some pain relief.  As the attendant wheeled in the trolley, I requested if said prisoner could get his medication first.  The person snorted and refused and said he had to follow the routine.  This particular prisoner was not well-liked by the guards. He was often provoked, because they knew he had a short temper and could be violent. He spent many an hour in the isolation wing where I was allowed to visit him.  I was always made to wait unnecessarily as the guards miraculously found something more important to do than to let me visit the prisoner.

(Excerpt from a letter I received from above-mentioned prisoner)

It's easy to fall into these power games, consciously and unconsciously.  Do I delay a response to a client to tomorrow because they are not as important as other things or because I know they have no recourse to complain?  One of my good friends, who I met whilst doing my Masters, was an asylum seeker at the time.  He has since gained refugee status.  He waited 274 days between his first and second interview because the civil servant literally forgot his case.  All that while he was separated from his wife and daughters and never so much as received an apology. We decided not to make a formal complaint because of the fear that it might affect the final judgement on his case.

In an harassed care system where care minutes are allotted to each patient, how easy might it be to fail to wash somebody thoroughly or to leave combing their hair until the next day or the next carer?  Very easy.  An Angolan refugee who works in the care system told me how concerned she is that we are failing our old people because there’s never enough time to give them the attention they need. I worry about checks and balances and accountability.  It’s easy to skip one’s duties; it’s easy to see failings in a system; but it’s not so easy to speak up about it.

That’s why it’s so important to develop the skills of self-reflexivity as well as reflectivity.  Not only what do I do and how do I do it, but why do I do what I do and what impact do I have on the whole – am I causing harm or perpetuating systems of injustice and violence?  And what do I do if the answer is yes?

Back to my mother. It would be easy to give in to her desire to not want to wash or change her clothes.  I could fail to see the wet marks on the bed protection pads and save myself the toil or ripping both pads off the bed and putting on new ones, taping the edges with a light masking tape so that she doesn’t feel the seam under her nightclothes.  I could skip washing her clothes as soon as there’s a small stain on them; who would notice anyway?  She certainly wouldn’t. But it’s the small things which matter, which say to me that I am caring for her as well as I can. 

As hard as it is to care for a loved one who is sick, I encourage you to give it your best shot, even if you feel you could be doing better at times. Right now I have at least five friends who are coping with a parent or close family member with dementia.  These are trying times as populations age due to better healthcare and the incidence of dementia increases. 

Notice how well you are doing and remember the importance of caring for the little things. Whether you are at home looking after somebody, working in business or government or running your own enterprise, how we treat the least will be reflected in all that we do.

 'Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me. '” (Matthew 25:40)

And if you are interested in reading my ethnographic research on Affect and how we might easily fall into unhealthy affective patterns when working with the vulnerable, drop me an email and I’ll send you a pdf. You’re also welcome to forward it to others if you think it might support them. Email: kim@centreofcourage.com