Lockdown Day 277 - Musings of an adult child of an Alzheimer’s patient

There are some topics most people prefer not to engage with and this is one of them: not everyone has the capacity to take care of a parent with Alzheimer’s Disease.

They might understand if there’s a material reason, because that fits into their narrow definition of what is and isn’t acceptable, but if your reason is emotional, you’re unlikely to find much understanding. Assumptions, assumptions, assumptions – every step of the way.

We don’t talk about it, because in the process of our socialisation there are tacit messages, rules and practices that we are assumed into that keep us trapped forever, with very little space for a dissenting response, no matter how well thought out or articulated.  In the small circle of people I might discuss personal things with, there are probably fewer than five who would hear me out on this topic without judging or disapproving (by either stating their views clearly or, more commonly, not saying much, but showing by their facial expressions that they feel I have crossed the line, that I am a terrible person and that I’m going straight to Hell).

The truth is – nobody is prepared for a parent’s Alzheimer’s diagnosis. But somehow, what we default to is this set of one-size-fits-all rules that we grew up with that dictates how we should respond to this sad and devastating reality. In the society in which I grew up, you are expected to take care of your ageing parents, no matter what you are dealing with, and if you say you aren’t able to, there's something wrong with you. 

Because I’ve been grappling with this for eight and a half years, I’ve done a lot of reading on it. The truth is that every individual in every family responds differently. A healthy approach is for the family to sit down with a suitably qualified and sensitive counsellor, as early in the journey as possible, and to talk openly about whether and how each family member is able to contribute to the care of the parent. Central to the ongoing process is respect, for everyone involved – even when their views differ from yours. Also healthy would be regular review meetings by the family, to discuss what is and isn’t working and to agree on what has to change. In cases where the family can’t agree (this is common!), a session with a counsellor could provide clarity and guidance and help the family deal more compassionately with not just the loved one, but also each other.

The one thing you cannot be, when dealing with any kind of degenerative disease, is rigid. The disease changes, so the loved one changes, which means the caregivers have to be flexible. What pertained 8 years ago won’t pertain now.  

In my socialisation, the message was clear – you never put your ageing parent into a home.  All kinds of judgemental things were said, when people did this, which of course further entrenched it as a terrible thing, in my young, impressionable mind. However, when my mother was diagnosed with Amnestic Syndrome, in April 2012, and could no longer live on her own, I knew without a doubt that I could not take care of her in my home. (The Alzheimer’s diagnosis came a year later.)

I had been retrenched in October 2010, had been taking on short contract jobs, while looking for something more permanent, and was between jobs at that time. My biggest priority was finding a job, in order to support my children. I had had an acrimonious divorce in 2001, had won a terrible custody battle and for years had been dealing with my ex-husband’s successive attempts to derail all my efforts at stability and to have me declared an unfit mother. My biggest fear was having him succeed at this. Besides all of that, because I was (privately, on a daily basis) trying to process all the trauma experienced in my adult life, I did not have the emotional capacity to take care of someone with dementia. I knew that, without a doubt. This has not changed. 

There are so many aspects to this topic. For example, despite the strong messages I’d received from my community, as a child, about how unacceptable it was for people to put their parents into a home, my mother had always said the opposite – she would always say: “When I can’t live on my own, one day, please put me in a home.”  The subtext – often said in so many words – was that she didn’t want to be a burden to her children. So, when the time came (suddenly – with very little time for the family to process it) for a decision to be made around my mom’s living arrangements, I assumed we’d find a home for my mom, but my sister somehow knew that my mom’s spoken instructions had been more bravado than truth. I knew without a doubt that I could not be my mom’s primary caregiver (for many reasons) and my sister and her husband made the decision to bring her into their home. 

Initially, my mom spent occasional weekends with me, until my sister asked me to do it on a fortnightly basis – which I did, until March 2020, when the COVID-19 national lockdown started.  

I’ll get back to my personal journey, in a while, but there are a few other things I’d like to say:

1.       Families need to discuss these things and prepare for the possibility of a dementia diagnosis in an elderly relative. In my case, not only have my kids and I discussed it, but they know what my views are. I am busy putting it all in an official document.  

2.       One of the factors that contribute to families looking after their aged relatives themselves is the unaffordability of good alternative care. Old age homes in South Africa, like so many other things in our society, still show the huge disparity between facilities for the haves and the have-nots. State-owned facilities for ‘’white’’ people were more plentiful and of a much better quality than those for the rest of the population.

·         These days, anyone can live at any old age home, but the affordability factor is a significant deterrent. General residents at state owned old age homes hand over most of their state pensions, as far as I know, while Alzheimer’s care may cost 4 times that amount.

·         In private facilities (originally for “whites”only), which are better facilities, with more individualised care, Alzheimer’s care could cost anything from R12,000 a month. Very few families I know personally can come up with that kind of money.  

·         Another form of care is home-based care, where a qualified carer is hired to come into your home, at agreed hours, to care for the old person. This gives the primary carer relief and ensures the loved one is still cared for. There are women in many communities who undergo training and do this as a post-retirement job, to earn extra money. Of course, there are also younger people who do this kind of work. Carers can be accessed through various channels, including agencies and some NGOs.

Ok, back to my journey. There’s still so much I feel I can’t say, even while trying to openly write about my struggle. The shackles cut deeply when we try to wrest ourselves from them.

I’ve found that another contributing factor in how people view the topic of caring for a family member with Alzheimer’s is religion. In my experience, many people who are religious seem so steeped in tradition, that they leave very little room for individual responses to anything. They hold themselves accountable to a set of rules in a holy book, and assume everyone else does, too. From what I’ve observed, people are a lot more accepting of someone openly coming out as gay than as an atheist.

Religion holds us accountable to rules and systems we had no part in drawing up and it passes on, from generation to generation, the harsh judgements that accompany non-compliance. Yes, religion gives people peace and a sense of community and purpose, but its adherents can be extremely harsh towards those who don’t comply. A woman at the church my sister attends said, soon after my mom’s diagnosis: “Whatever you do, don’t put your mother in a home. “ Firstly, she had no right to say that without knowing the family’s situation and secondly, why did she assume her words carried any authority? The thing is – they do, if you think they do.  And that one sentence can become a different kind of sentence, if you let it. But you have a choice. You always have a choice.  

So back to the few friends who don’t judge me when I tell them about how stressed and nervous I am about caring for mom, now that she has Alzheimer’s - the ones who don’t look at me with faces that suggest anything from deprecating clicks of the tongue to eternal damnation. These are the people who themselves have dared to make different choices to the ones they were expected to make and who boldly and courageously live authentic lives. They’re the ones who colour outside of the lines, who dress differently, who allow life to lead them down interesting side roads and who opened themselves to careers or relationships that weren’t standard, in their communities. They are the outcasts, the different ones, the ones whispered about at family gatherings.    

It’s easy to romanticise something you’ve never had to deal with, yourself. And even if you have dealt with it yourself, your circumstances and responses were yours – mine are mine. No two people are alike.

If you are someone for whom all the elements aligned perfectly, when your parent was diagnosed with Alzheimer's, and you found it the most beautiful privilege and blessing to be able to be the primary carer of that loved one, I am happy for you. And I mean that sincerely. If you had all the resources, including the mental health and capacity, as well as the financial stability, to adjust your household and take on this mammoth task, I am happy that that was how it played out for you. But remember that that was your choice, made from the place where you found yourself in life; you have no right to assume that just because that was the obvious course of action for you, it has to be the same for someone else.  This is what causes tension in most families. Unfortunately, what most adults do in this situation is default to the hierarchical roles afforded by birth order - or, to put it more bluntly, bullying. And when that doesn't work, some other form of punishment is meted out, like freezing the 'offender' out.     

What we should do is listen when someone expresses how they feel about something, and not make assumptions. And not judge. The more you invalidate someone's truth, the more you alienate that person. If you don't understand how a family member's journey has impacted on them, create a safe space for all involved to sit down and talk, and to listen. The most important thing families should do, when faced with any kind of crisis, including an Alzheimer's diagnosis, is communicate - lovingly and consistently, and with a view to arriving at a win-win solution for all. There's no other way. 

As Lemony Snicket said: “Just because you don’t understand it, doesn’t mean it isn’t so.”