dementia

The Caregiver Files: Anger and Guilt

Scott McPhersonLeave a comment

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 Caregiver’s Test

Scott McPhersonLeave a comment

1365 Relax and Succeed - The Caregiver's Test 2

As many of you know, for close to 10 years now I have been increasingly shifted into a full time role as the sole caregiver to my elderly parents, who are both old enough to have both served in WWII.

Much to the disappointment of those in need, the vast majority of people will never even consider taking on care-giving. Then again, rarely did our parents offer to care for their parents either.

Even in large families the duties almost always fall to either the spouse, a single sibling or one child. That singularity means the social, financial and emotional prices are all paid by the patients and those solo caregivers.

What is unknown to many is that even in the system here in Canada, which is one of the better ones around the world, there are still nowhere near enough long term care beds for the number of people who need them. There are also many seniors who have zero interest in living in them for very good reason.

(Sit with enough seniors long enough and they start confiding senior secrets about the weird challenges that go with institutional living. But I’ll leave that for another post.)

Unless a person is able to pay a large amount to get into what is essentially a ‘medical condo,’ in many cases the wait lists for public facilities can last many years. If the people did not previously know to plan ahead and get on a list prior to them needing the placement, the parent may only be given space weeks before death is imminent.

This inevitably means that someone in the community will have to step up or the person can end up homeless –as we can all see if we look at the ages of some of the people on the street.

For those lucky enough to avoid that, they survive thanks to caregivers providing 24 billion dollars worth of unpaid care every year. Caregivers pay this price by lowering the amount they work and earn in order to create the ever-increasing amount of care time.

Those financial costs are very real, and many of the fears around care-giving are valid. But many are also myths. For example, in cases of dementia, the public tends to overestimate how bad the process is for the patient and underestimate how challenging it is for the caregiver, because the patient’s decline is eventually obvious, whereas the prices paid by the caregivers go almost completely unseen.

In dementia, a lot of the time people that have the disease can function quite well and enjoy life for even a couple decades if it’s progressing slowly, and as long as they have someone around to protect them from mental mistakes or physical danger. It’s only the final stage that is the part most of the public imagines as ‘being dementia.’ This is very good news if you’re worried about memory loss.

Dad with parrot at Fulton Eldercare
My father is my hero. He goes to a seniors group for 10 hours each week. He still loves to play games, and he still loves music, and dancing, and he especially loves it when the playschool down the hall visits, or when there are animals brought down from the zoo for the day. Since parrots repeat things too, they are often the perfect conversationalist for people with dementia.

Meanwhile, the caregiver’s prices are difficult to describe. As one might guess, this role is largely taken on by women. And by being in countless waiting rooms with female caregivers, I know one of their biggest care-giving challenges relates to love.

If we think of the ages of the seniors, it means the caregivers are often nearing the end of what is considered the most romantic parts of their lives. Generally, it’s only after they start care-giving do they usually realize that if they are married, it will in most cases strain their marriage –even to the breaking point. That is like two huge weights on them at the same time. Who should be the priority in that case, the parent or spouse? It’s like a form of ‘Sophie’s Choice.‘

If the caregiver is single, the care can virtually end their romantic life at a time when they feel like time is already running out. As nice as dating can be when we’re older, dating at 30 or 40 is not like dating at 50 or 60, and there is no recovering that ‘romantic youthfulness’ for most people, and they mourn that deeply.

I felt these quiet but painful prices were best expressed by a woman who confided in me that the reason she was suddenly brought to tears in a waiting room was due to a comment from a dear friend, earlier that day.

The friend came by for a rare visit that afternoon at the home shared by the caregiver and parent. “She hated the ‘smell of old people.’ After half a cup of tea she told me to call her to make plans and we could go out for tea instead. I felt like a judge giving me a life sentence.”

If that doesn’t seem that bad, add this: the caregiver knows there is zero chance of that happening because in many cases it simply isn’t an option to find someone to take responsibility for someone with a medically complex case on for a few hours so the caregiver can go out for tea. And her mother’s bowel control did not allow her to take her out in public, so in essence the friend was saying that she wouldn’t see her at all.

“I was living inside that smell every day of my life for the last four years. If my best friend wouldn’t stay I knew right then that my romantic life was over.”

It is unlikely that the departing friend saw her words as the death knell for her friend’s sense of femininity, but when a conversation like that is one of the caregiver’s few interactions with the outside world, and it’s coming from a close friend, it sounds like a door slamming on life itself.

1365 Relax and Succeed - It is not a test of our ability

The question is, why do caregivers pay these enormous prices? The answer is the same for any question involving any price paid by any human for any thing. We believe the value we get back exceeds what we are paying. Both capitalism and love exist on this reward-based framework. If we don’t think something’s worth it, we won’t invest ourselves in it.

That being the case, it is difficult to describe the feeling one gets from intimate moments in care-giving. It can be a lot of prodding and arguing and cajoling, but can also be a lot of laughing and trust and understanding. And there are few better feelings as when your parent expresses, in a rare weak moment, that they are not afraid of dying –but of losing their sense of security in the world– and that you are the rock they are clinging to.

When you realize that they’re telling you they wouldn’t feel safe without you –and these are cute, frail, weak little old people– it breaks your heart open and you just want to do everything to help them feel safe the same way we would with babies, who are equally helpless.

Care-giving is the hardest thing I have ever done and I would very strongly urge anyone considering it to do as I did. Prior to doing it, sit down and frankly listen to people who have done it. Do not take their warnings lightly. Listen to podcasts and radio shows about it. Watch documentaries and read books and blogs from people who have done it, and in doing so you can learn more about both the rewards and the prices that go with care-giving.

If it feels right for you, do it. If it feels too big –too hard or too big a sacrifice– then you are not the person to provide the care and it is fine to accept that. This is not for the faint of heart. This is entirely about the most generous and unconditional form of love.

The role is taxing in emotional ways that one simply has no hope of even imagining without being there for hours on end, every day, year after year, watching the patterns change, enduring some abuse, and cleaning and cleaning and cleaning and cleaning.

The grace in it all is contained in the fact that, in the end, it is the contrast created by paying all of those social, emotional and financial prices, that make the tender moments so incredibly powerful. They can get you through literally years of struggle.

Having a parent be frightened, and then come to us for the comfort they once hopefully were able to give to us –has given my life more profound meaning than any other thing I have ever done.

peace. s

The Buddha in Disguise

Scott McPhersonLeave a comment

1360 Relax and Succeed - It's amazing how much more can be accomplished

My 94 year old Dad was in the hospital for a low heartbeat that ended up being only a half-beat. It was causing him to lose blood flow and pass out. It was the falls that were doing the damage. People on blood thinners are extremely hard to bandage, particularly when they have almost no sense of touch, nor the awareness to fully cooperate.

Many people misunderstand dementia. For many it’s a disease that takes a very long time to take hold. Its progression can most easily be understood as a regression back towards babyhood, with the final stages being that helpless being everyone imagines. But the progression still has the potential for joy and full experiences.

Due to it’s slow progression in many, unless you knew my Dad well and saw him often, most people wouldn’t even have noticed the first decade of it. And even after that, the progression was still slow. Being a person obsessed with studying the brain, I realized that I needed some objective way of determining where he was at in his decline.

I am very science-minded in how I approach life, I use a lot of Socratic Method and some firm principles to make most of my decisions, so I’m a bit like Spock with a big heart, (except when I’m hangry, then I’m a Klingon). I looked at Dad’s life for instances where his mind had to do various levels of complex tasks and I realized that two of his favourite things were the perfect devices for assessing his capabilities.

Dad loves puzzles (those ones you’re supposed to take forever to take apart and yet always does them quickly), and he loves playing cards. I have a brain that naturally notices detailed patterns in behaviour, and so I can watch him and see what parts of his brain are active and which he’s lost. This is a good combo. His diseases ebbs and flows, and it goes in phases. It really is quite interesting.

If you want a metaphor for the common effect, dementia for many is a condition that you can think of as lowering the power supply to your brain. This means that thinking about more than one aspect of an idea at once (like comparing two potential hands in cards), gets hard without enough electricity to load up a new potential hand while still holding the first possibility in our memory.

It’s like he’s picking fruit to build the two potential hands of cards, but he can never hold enough fruit for two full hands. But the amazing thing about the brain is, it’s clever. Life always tries to find a way. Just because it doesn’t have the capacity to load all of those possible neural links at once doesn’t mean the mind doesn’t know that the info is in there.

When this happens, totally by nature you’ll see Dad coursing through his thoughts one at a time. It’s like walking every line on a spider web rather than grabbing the whole web at once. You can literally see his eyes following a chain of thoughts.

For those of us who know him well and can catch the look in his eye, we can often see him moving through this process when he is. But there are days where you can ask him a question, and think he’s lost it but it’s not important enough to re-ask. Then suddenly, five minutes later, Dad will be done his mapping of the spider web and out of seemingly nowhere he’ll say, “He was from Aberdeen,” in answer to your question in the previous conversation.

Dad with parrot at Fulton Eldercare

Where this can be frustrating for many is when he repeats questions (which is why he really likes parrots). When he’s tired but very fixated on something he can ask the same thing every two minutes for hours, (many caregivers note that fixated behaviour is another common reaction to dementia). While he was in hospital, a visitor seeing another patient asked me how I could stand it –that just hearing the same question five times in eight minutes drove him crazy.

I explained that I used to live in Sydney Australia in an apartment on a very busy road. When I first moved in I could hear every time the light a block and a half away turned green due to the change in the noise. Within a month people would visit and ask if the noise bothered us and my girlfriend and I would ask “What noise?” So, A) we get used to things.

B) is that it’s really quite easy to handle his repetition when we live in the Now because the concept of repetition demands we think both a past and a future into being. When Dad does bother me it’s when I’m living in the past by recalling the last time he asked me. I can’t blame that on him, that’s me. I don’t have to have my brain still talking to me about what happened 3 minutes ago.

When I don’t –when I’m present– I just turn and answer him originally every single time, and it sounds pretty much the same the 80th time as the first. Because I’m not dragging him through the other 79 times before I react. Each time is new, in that moment, for both of us.

We can’t expect to exhibit our best behaviour all of the time, so when I’m tired and hangry I want to be clear that I too can get impatient with Dad. There is no question there are high odds of frustration with dementia. But for the most part it’s rare with him and I because, in the present, there is no history to repeat or deny.

When spending time with Dad, rather than look back and wish I could go forward faster, I just plod along at his slower pace and keep my mind from racing ahead. It’s actually good for me.

Care-giving is an extremely taxing role even if we have a lot of skills around how we use our consciousness. But if we do have those skills, we can make that experience very rewarding, and the cost of the experiences pays off in terms of our own development.

In the state that he is in now, Dad slows everyone down and engenders patience. He has us all reconsidering our actions, and he very naturally brings out the best in others. This makes his current role in life into one much like a Buddha. And in Asia they say it’s lucky to rub the Buddha’s belly. So today when we’re playing cards, I may have the advantage of faster memory, but he can always just rub his own belly.

peace. s