If a caregiver feels isolated (as though no one can understand their unique pain), in a way they are right because no set of relationships, circumstances or health are exactly the same. At the same time, there are people who can relate to our challenges.
Obviously the first group that understands are those who have done it. They have a unique appreciation for the weird mental place that caregivers must inhabit. In many cases, while caregivers are offering truly necessary and often difficult care, the caregiver’s own life will often be left to march on, largely unattended.
The biggest and most notable sacrifice often means that a caregiver gets less soul-nourishing time with their own friends, as was discussed in The Caregiver’s Test. Less positive input and time spent relaxing means daily chores become increasingly harder.
This is also generally happening at a time when most people imagine they will be slowing their lives down. It’s certainly not when most people imagine themselves taking on the hardest task ever. In my own case, by being born in my parent’s middle age, I am very lucky to be 20 years younger than most people who do this. This is worse for income but better for energy.
Despite the fact that these responsibilities can keep us from our own friends, this is not to say there aren’t wonderful upsides to spending time with our loved one’s friends. They key difference is, those relationships often include experiencing more routine but painful losses because those friends are often the ages of the caregiver’s parents and they simply die at a faster rate.
But who knows? That’s probably good training for our brains. It makes life seem more precious and death more ordinary, and that’s a healthy way to see it. Rather than fear death, we should respect it, and then respond by living our time on Earth more fully and deeply.
The trick for caregivers can be, appreciating the value of life more than ever is an odd impulse to have when we simultaneously feel estranged from our own lives. But that also hints at how we can still use our time spent caregiving to mine some really meaningful personal depths.
Any time something is really hard to do, we can rest assured we are being repaid in some larger psychological and/or spiritual way.
In addition to the prices paid regarding friendships and time spent relaxing, caregiving is also personally taxing in strange ways that can be difficult to endure when we’re already lagging in energy.
Even the caregiver’s own health concerns will get delayed responses, or often go unshared as a way of ensuring that the parent, sibling or child being cared-for does not feel a sense of fear over potentially losing access to their only support person.
It is also often necessary to conceal the inevitable drops in income –particularly for those who are self-employed, whose hours are income. If discovered, those losses can generate guilt on the part of the person being cared-for, plus those drops in income can then also reduce the number of conveniences that can be employed which further taxes the caregiver.
There can be a lot of cleaning required for people in care, so those without the luxury of an occasional maid service will experience a certain relentlessness that is itself harder than the actual tasks. Also, if there’s no money to go out for dinner then there are no nights off for the cook. All of this amounts to an enormous outflow of spiritual energy with very few opportunities for inflow.
That return flow from the person being cared for is the advantage that the mothers of babies and toddlers generally have when compared to someone caring for a loved one with dementia. But they do understand large parts of the adult caregiving experience.
Parents of toddlers also can’t leave the person they are caring for unattended except when sleeping. They also must often decipher weird clues in order to resolve a problem, and they will often be dealing with a fussy, unsatisfied, frustrated, unreasonable or even an angry person to look after. It is no fun thing to be screamed at or criticized by the very person the parent or child is sacrificing so much of their life for.
But young mothers of healthy kids, know this: you are fortunate. You look into the growing faces of ever-more capable people who –despite their nasty sides– can share love along with their frustration and disappointment.
Both things can become effectively impossible in cases of dementia-related decline. People can’t hold enough facts together to conjure up the notion of love, which is, to our minds, the shape or flow of activity within particular regions of the brain.’ They try, but happiness is about as close as they get except in unspoken moments were the love is delivered in the wordless form of making them feel safe.
Time prices, energy prices, soul prices –if caregiving feels quite relentless and sad up to this point it was supposed to feel like that, as a means of trying to illustrate the strange bleakness that can be a caregiver’s reality at times. Those things, especially over time, leave a caregiver’s spirit thinner and more easily knocked off balance.
Those times are when we can have a straw break our camel’s back, and many caregivers and parents of toddlers know, these are the hardest parts of the job. Little in life feels worse than to snap angrily at the helpless person we love, and their cowed reactions only make it worse. It feels like stabbing ourselves in the gut.
For my Dad, the other day, it was a simple repetitive action that lead to my most recent experience with this. He has neurological deafness, meaning the problem really isn’t his ear, it’s his brain. One day he can hear a soft voice through his left ear without his hearing aids, the next day –or hour– and he won’t hear someone screaming into that hearing aid.
But he has dementia and doesn’t ‘know’ that is the case because he can never remember what’s previously happened.
How this played out the other day was that Dad took out his hearing aid, turned to my mother and ask her to put a new battery in it, which we did. The first time he asked. But he’s neurologically deaf, so a new battery won’t help if it’s his brain that’s not working.
After putting in the new battery, he was given his hearing aid but, when he put it in, he put his hand over his ear to test it, Mom and I heard it squeal, and then he immediately took it out and turned to Mom and said, “I need a new battery, this one’s dead.” The descending, backward conversation that followed sounded something like this:
“I just put a new battery in.”
“Well you didn’t, because my hearing aid doesn’t work.”
“Yes she did Dad, I just watched her do it, but you’re deaf in that ear so the hearing aid doesn’t matter.” I have to yell that, because I’m on the side of the deaf ear.
Dad then responds by covering his hearing aid which again, makes it give off a painful, high pitched feedback squeal which is not at all pleasant for Mom or I. But he can’t hear it, so he keeps trying, which keeps us listening to the piercing sound. “No. See. I need a new battery.”
“Dad, it is squealing, it has a battery, you just can’t hear it.”
He covers his ears again and makes us listen to the squealing for far too long –yet again– as he tries to ‘find it.’ “No. Battery’s dead.”
Mom and I have been through this a million times before, so I know I have to prove it. So I stop cooking, I go over to him take it out the left ear and the take the hearing aid to his right side so he can see me cover it like he was, and then he hears the feedback squeal through his right ear. He always looks surprised when it squeals, and then he’ll agree it’s working and he’ll put it back in.
And after it’s in, he cups his hand over his left ear, but still can’t hear it squeal, so he turns to Mom and he starts right from scratch with, “I need a new battery.” By then he has completely forgotten the entire previous conversation so the process repeats like that, over and over and over and over, and he’ll ask all night if we let him.
As you might imagine, that gets to be like water torture. But we respect the fact that he doesn’t understand so we keep our own feelings in check and we just repeat the process over and over and over because what choice do any of us have?
The problem is, after a bad week where the prices noted at the start of this piece were already high, we can be so low on energy that we snap, and one or the other of us (or you reading at home), will get angry and tell him/them to drop whatever it is they are fixated on.
I cannot begin to describe how disappointing that feels when it happens. Because when a dementia patient can’t grasp an idea, they can generally grasp the tone of the people they are with. If people are ignoring them, they know that. If we’re happy, they know that. But if we’re angry, they know that too. And here’s where it gets really complicated.
Due to their understanding of emotions more than ideas, generally, the anger works. Provided that is a rare experience for the person, it shocks their brain out of its repetitive loop and they suddenly start seeing the room as being about others instead of whatever they are fixated on –like the hearing aid.
No matter how valid a reaction anyone has is, it will always still feel truly horrible to end our own torture by causing the person we’re caring for to feel like they’ve done something wrong.
The bizarre thing is, even if Mom and I could get the aid to work, there would be an 95% chance he’d have any interest at all in listening to anyone or any thing anyway. He’s more likely to remove the aid anyway just to play with it. That’s because many dementia patients love taking things apart in the same way that they’ll get obsessed with picking up crumbs.
With dementia, pieces and wholes often become fascinating. I’ve even noticed an early sign of dementia can be when someone seems obsessed with removing the branches from trees. That was actually the first sign Dad gave: an irrational need to try to remove the parts of things he deemed ‘out of alignment’ in some way. (Having an intense, pattern-matching brain while watching a dementia patient is incredibly informative.)
Dementia patients are often obsessed with alignment, and even if you have their place mat square to a TV table, that’s no good if there are crumbs between the border of the mat and the table. It can be surprising how hard it is to get an adult out a door for a medical appointment when they don’t feel they can leave until every crumb is picked up.
So how can we feel okay both about the monotony of actions like bread crumbs or repetitive questions, while also being okay with ourselves for when we snap? We accept.
If we think we can’t, we already do so in other areas of life. No one expects toddlers to walk at adult speed with their tiny little legs. That is kind of the adjustment you make with a dementia patient. You leave really early for everywhere because just getting out of the house and into the car can be a half hour tug of war over crumbs or hearing aids or shoes on the wrong feet or any other thing.
In those situations our only hope is to adjust our lives to suit the reality we’re given, and caregivers get pretty good at that. But no one gets good at ‘snapping.’ It always feels terrible to do to anyone. Despite that, we are sure to be constantly disappointed in life if we somehow think any of us is impervious to negative reactions. These are natural aspects of our humanity.
A sense of frustration is what often drives innovation and solutions. So bad feelings are often useful, and we cannot expect to live our lives without experiencing them. There can be no peaceful way if we cannot define it relative to that which is not peaceful.
Yes, if we’re angry too often, we should seek support from friends or professionals. But we’re not being unrealistic or failing if we snap once in a while, especially when we’re exhausted and hangry. Also, these things must be taken in a larger context.
With the dementia patient, they will not remember the experience so their sense of us will be based on our history with them, not on those isolated moments. So little to no permanent damage is done (whereas this is often not the case with the toddlers).
The advantage to those experiences is that they really hurt, and in feeling that way they reorient the caregiver back to their best self. After Mom or I snap, or after we see another caregiver do it, we always see an immediate blowback effect where the person follows that with remarkable levels of patience.
In this way the anger is what brings about our clarity of purpose. It resets us on the path we seek, and it does it by making us feel terrible about being off the path. That’s not a bad mechanism for quickly getting us to be our better selves by recovering from our own pain much faster than most of us could do otherwise.
Can we see the natural system at work there? If we don’t see those moments as failures, but as logical points on a logical journey, then we are simply living out the Yin and Yang of life.
Pressure, fatigue and relentlessness leading to frustration is natural. Nicely, so is our loving reaction to snapping. But we don’t feel better for having snapped, we feel worse. That painful reaction instantly motivates us to find the best and most patient versions of ourselves and that is a genuinely helpful thing.
I will never pretend it feels good to snap because everyone reading this knows of times when we have and those still hurt years later. I wince when I think of past examples. But that isn’t a sign we are bad people. It is a sign we are human.
The fact that we have such a strong distaste for those experiences proves that those moments hurt because they are so far beneath who we know we fundamentally are. This means that beating ourselves up for those momentary lapses does no good for either us or the person being cared for, we are better to simply enact our better selves.
What both we and those we care for really need, is for everyone to be healthy. If it takes a shock of anger to get there once in a while, that is unfortunate. But once that’s happened, we should not forget that there is great value in quickly grabbing our renewed and more compassionate reality.
However painful, how we got there is the past. But if we turn our mind to the present, we can realize that we have been left in a state of patient love that actually extends our ability to provide care. And that is a sign of the strength of the genuine and dedicated love that lives within us. So, knowing that, be kind to yourselves during times when your load is heavy, for that is when everybody stumbles.
A serious childhood brain injury lead Scott to spend his entire life meditating on the concepts of thought, consciousness, reality and identity. It made others as strange to him as he was to them. When he realized people were confused by their own over-thinking, Scott began teaching others to understand reality. He is currently CBC Radio Active’s Wellness Columnist, as well as a writer, speaker and mindfulness instructor based in Edmonton, AB where he still finds it strange to write about himself in the third person.