The Caregiver Files: Anger and Guilt

1368 Relax and Succeed - It's not the load that breaks you down

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.

1368 Relax and Succeed - There are only four kinds of people in the world

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.

1368 Relax and Succeed - Forgiveness is not an occasional act
Do not forget to also bestow forgiveness to yourself.

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.

peace. s

The Friday Dose #110

As you’ve likely noticed, there is a new trend in advertising that rather wonderfully hinges on the positive aspects of life. Hopefully it will take hold and almost accidentally–and this time positively–change the society it functions within.

If you read me often you know that I occasionally write about how advertising one of the most destructive and insidious forces in our world. It has historically always targeted our ego and its fears. We’re frightened into cooperating. We feel like we won’t be cool, or we won’t be in, or we’ll be somehow missing out. It’s where most FOMO is born.

At the same time and in this same world there’s a book I found very funny. It was written by a guy who lives not far from me named Will Ferguson and the book is called Generica (aka Happiness). It’s funny because it’s about a guy who writes a book that makes the whole world happy and that ruins the economy. It’s fiction but its central point is valid.

If our needs go away so do most of our problems. And if we’re not focusing on our problems, what then do we have time for in our lives? Ask yourself this question seriously. Ask your friends too. Figure out what your answers are and meditate hard on why you’re not following through. Is your life really not going well, or are just not fully living it?

Stop waiting for things to happen and start making them happen. And have a wonderful weekend. It’s far more up to you than you’ve realized.

peace. s

Scott McPherson is an Edmonton-based writer, public speaker, and mindfulness facilitator who works with individuals, companies and non-profit organizations locally and around the world.

Parental Limitations

Our mind could have any habits or choose to recall any part of its past, but our very sense of identity means that we get up every morning and load the same software-us into the hardware-us. That brain could be bold instead of shy. It would just have to do one instead of the other. But we generally don’t. We generally surrender that freedom and instead we play out the role we’ve unconsciously written for ourselves. That’s what our ego’s for—it recites who we are to us. If we’re not constantly reminded about our limitations who knows what we might try?

677 Relax and Succeed - A teacher is never a giver of truthI was fortunate enough to have two parents that didn’t really set limits for me. They were stricter than most of my friends parents in most ways, but much more relaxed and open in the most important way. I was expected to live up to commitments and carry my own share of the family chores and pass in school etc. etc., and rather than an allowance I had to pay room and board, but I was not pushed toward any sports or any grades or any post-secondary or employment choices. My parents spent more time asking me who I was as opposed to telling me who to become. That’s huge. That, in my experience, was the biggest fundamental difference in how I was raised. Now, when I asked Mom about this tremendous wisdom, she simply said,“Oh we learned from your [much older] brothers that you can’t really tell a kid what to do.” So they focused on principles and let me find my own way and that has lead to a fantastic life that I’m very happy to have lived.

As with many parents mine each took on different roles. Mom was the one who taught me to follow rules and Dad taught me to question who made the rules and their value. Mom taught me to be polite, Dad taught me to respect others. Mom taught me to vote, my Dad taught me to care for others just as much as for myself or those I loved. Mom made sure I lived up to my commitments regardless of my personal resistance and Dad made sure that I understood that apologies helped people feel better. Mom wanted me to be responsible. Dad wanted me to have fun. Mom wanted me to be a good citizen and Dad wanted me to be a good friend.

677 Relax and Succeed - The rules for being amazingI routinely get all aspects of this wrong but I nevertheless know that I’m always genuinely pointed in a loving, caring direction and so I live without regrets or a sense of judgment. I respect others so much that they are welcome to not like me. If I’m going to be a specific way it only makes sense that I won’t mesh with some people. Meccano can’t be Lego. My parents acceptance of whatever I did as long as it was respectful means that I feel good as long as I am respecting other’s perspectives as much as my own. I may not always agree, but I’m free to have my views and I have no conflict with them having theirs. People are welcome to have their conflicts with me but I do not have any with them. It’s very peaceful.

People could easily look at my life and see that I could have used the skills from my accident in a different way. They can see that I could have done more of this or that, made more money, been more famous or had more status or whatever. But in this weird subtle way, the way I was raised didn’t lead to any of those desires. But it did create a real value around the idea of freedom, respect and openness. I like that I never hold grudges, never hate people, and that I find it easy to forgive. I can’t imagine what money or fame could get me that would equal the value of just thinking enough of others and of myself that I essentially have no real quarrel with anyone. It’s a nice, simple, clean way to live.

We can teach kids how to manage money and understand how loans work and we can teach them to change the flapper in their own toilet or the oil in their car. But if we don’t teach them to value their own life enough to enjoy it then we have spent all of our time paving perfect roads that ultimately lead nowhere. Life is not a destination. There is no particular perch from where it can be lived in total happiness. But at least if happiness is a priority then the child builds a life around what brings them joy rather than what brings them externals. A nice car is only there to bring joy anyway, so why not skip the expensive middle man and go straight to the joy? But that’s not even on the menu unless someone has separated the idea of the car and the joy. One is to get the other, it is not the other itself.

677 Relax and Succeed - My philosophy isIf you want the best way to teach a person to value joy, value it yourself. Laugh more, do more things that are frivolous but joy-filled. Stop teaching kids how to protect themselves from bad things without telling them how to go and get good things. You need both for a successful life. What you don’t need is a cookie-cutter pre-conceived idea of who your children are. Let them be known to you and support the life they choose for themselves just as you wish the people around you would have been fully supportive in whatever you chose. I had that in life. It feels fantastic to have that support. It breeds a lot of confidence and that’s also where a lot of happiness resides.

Don’t worry so much about loading your kid up with every possible skill. They’ll get hurt terribly just like you did. Everyone does. But that’s okay as long as they know what to do between disasters. As long as they wring some joy out of those in-between times they’ll be fine. That’s a lot of life. Most people die without ever having even started to live. So just love and respect your kids and teach them to value their own enjoyment of life and a lot of the rest will just sort itself out. The best thing you can possibly do is be the best version of yourself that you can. Enjoy your own life. The rest is osmosis.

peace. s