Many of us, though not all, are to a degree controlling in our lives. Sometimes this tendency is beneficial, and sometimes detrimental; it’s a common feature of many personality types. I admit, I am a control freak. Friends, family, and members of the various teams I have led or worked with would tell you that’s an understatement.
I’m not necessarily a micromanager, but in many aspects of my life, I was and still am ultra-controlling. Coupled with a rare and extreme case of impulsiveness (a trait from before my illness), it’s a potentially toxic mix. It embarrasses me to this day, and you will probably react with disbelief or even anger at this, but once, when my wife and I were discussing a new car for her, we had agreed on the make and model, but not on the timing of the departure of her beloved car of ten years (it even had a name!). Anyway, I made appointments to view new cars, and the showroom informed me that there was an interested party who wanted to buy what I was selling (a tailored part-exchange), and they could send someone out to assess it. I agreed. They came, and then said, “We’ll take the car for xxxxx.” For a fleeting moment, I considered discussing this with my wife, but my impulse took over, and I sold it, emptied the contents, and off it went. As my wife was walking back from work, she saw some random individual driving off with her car. I had a lot of explaining to do. This is not a good story!
Back to control… I recall a lecture where we attended a class on ‘Visiting the Sick,’ and we were told by a psychologist that it’s crucial to give the patient a sense of control. Why? Because when someone is in the hospital – often out of sheer necessity – the institution takes over virtually all decisions: what to eat, when to eat, what to wear, when to go to bed, when to get up, when to shower. This is psychologically very difficult. So, well-intentioned visitors can inadvertently make it worse. They come into the room and ‘let me rearrange the flowers,’ ‘have some grapes,’ ‘see this,’ ‘I’ve chosen these clothes for you,’ ‘I’ll get us tea.’ These actions, though kind, can deepen the patient’s sense of helplessness. Rather, an empowering approach is to ask, ‘Is there anything I can help you with?’ ‘Would you like to do anything – a walk, a coffee, whatever you want?’ ‘Is it too hot or cold for you?’ Such questions restore a measure of agency.
I’ve thought of this a lot in the context of control. At the moment, although seriously disabled, I would describe myself as having a high degree of control. I can’t drive, I can’t walk properly, and my vision is impaired, but I choose when I get up, what I do, what I wear, and major financial decisions are still made by or with me. Whether that’s a good thing or a bad thing, it’s important to me.
It scares me that I am on the cusp of losing it. As I read the forums of PSP support groups, I see that increasing reliance on a partner and others (e.g., a carer) is required as you lose the ability to dress, communicate, move, eat, and drink. Your world, and your control, shrinks.
Perhaps the most personally frightening example is the ‘End of Life’ document I have signed. In my country, there is a document filed with the national authorities outlining your end-of-life requests (e.g., medical directives regarding non-intervention or DNR orders). It’s a complex subject, particularly within Jewish law, and I studied and prepared the document with a knowledgeable friend. It appoints a ‘Power of Attorney’ to someone who will make all decisions on my behalf. After much thought, my wife and I decided on one of our older children (a complex decision in itself). When it came time to sign the final document, I asked how it was enacted. Our lawyer said that, legally, once my wife and child declare it effective, it is effective. It shocked me to my core how easily my right to decide my fate could be removed. Of course, I trust my wife and children implicitly, but it was still mentally hard. I asked for a day to think about it and then realized that this child was the right person simply because I know they will be able to make the tough decisions. It was the ultimate control freak’s nightmare. The same applies to financial and other forms of control.
As PSP progresses to its later stages, and as with all diseases and with aging in general, there must be people struggling with this. Therefore, I feel compelled to raise this topic. I am perhaps an extreme case – a recently retired partner and head of consulting at a Big 4 firm, suddenly forced to retire due to a rapid decline. But I am not unique.
I think this is something critically important for all involved in the care of patients to consider.
How can we give the patient – at their relative stage of life – some measure of control? It could be little things, like ‘blink twice if you want to sit or go outside,’ or a call to say ‘Can I visit now, or is later better?’ It can be simply offering choices framed as open-ended questions rather than closed or leading questions.
The patient, too, has a huge adjustment to make, and it is undoubtedly very hard. It is perhaps one of the reasons (I speculate here) that apathy is a known condition in PSP and other neurodegenerative diseases like Alzheimer’s and Dementia – it dulls the pain of loss of capability, memory, and so on. Perhaps full emotional engagement with such a loss would simply be too painful.
Control is a major issue for me, and one I have to work on. But I suspect I am not alone, and I suspect it is a much broader issue than just PSP. We all have a part to play in understanding and addressing this.
And one tip… never sell your wife’s (or other partner’s) car without her permission. Get it wrong, and it will be with you forever. Sorry, hun!
