10 Things Non-Caregivers will never truly understand

When you picture your future, you never really imagine that you’ll be responsible for another person’s welfare (aside from a child possibly). The thought that you might have to care for someone you love might pop into your head from time to time, but you never really imagine yourself as a caregiver to a loved one. It can be quite a shock when someone you care about suddenly depends on you for so many things… Being a caregiver means giving so much of yourself and overcoming so many obstacles big and small on a continual basis. Often times we are left to face these obstacles on our own, the struggles misunderstood by those who don’t experience the same issues every day.

That is why I’ve put together this list of ten things (and I’m sure some of you could come up with more) that non-caregivers wouldn’t really understand. Helping people be more aware of what caregivers face can help garner support and establish the proper resources to ensure that caregivers can thrive in their role without sacrificing themselves in the process.

So without further ado…

#10 Eternal Paperwork

One thing a non-caregiver might not be aware of is the heaping pile of paperwork that follows a caregiver like a shadow. Medical forms, insurance forms, disability/pension applications, legal forms, power of attorney’s, etc. Our signature becomes pretty much as valuable as any Hollywood celebrity except that we’re signing boring paperwork written in language we are too tired to understand.

#9 Social Isolation

I don’t think non-caregivers truly understand how lonely being a caregiver can be. Day after day at home with an ill or injured loved one, maybe having to give up a career or social life (or both). You can’t just go for coffee whenever you feel like it or go out and run an errand real quick. Not to mention, people might offer their support and encouragement when something happens, but when the dust settles they often avoid you like the plague, either because they don’t understand, they’re afraid they’ll say the wrong thing, or they just feel like they can’t relate to you at all so why bother? As you watch everyone distance themselves, caregivers might wonder who they can turn to for social support? Yeah there are support groups, but who has time to go to those? And if you’re on the younger side, the options are even more limited. For me, it was to a point where just chatting with the cashier at the grocery store was exciting (assuming I didn’t get someone who was totally miserable).

#8 The Balancing Act

Caregivers might be caring for loved ones with a wide range of conditions, some requiring more assistance than others. But one of the biggest challenges of being a caregiver is trying to balance caregiving life, caring for yourself, and having a life  outside of those two things (which often gets totally neglected, understandably). This requires 5 things:

  • A great attitude
  • Wicked time management skills
  • Knowing yourself well
  • Top notch problem solving skills
  • Many many sticky notes

Seriously though this balancing act is a full-time job in itself. No joke, if you thought caregiving was the full-time job you’ve missed the big picture. This is it. This balancing act is the hardest part of being a caregiver and I’ll tell you this, it has a high fail rate. If any non-caregivers want to help a caregiver out, this is the area to help with. If any organizations are looking to offer resources for caregivers, this would be a great place to start. How do you balance caregiving, self-care (I cringe at this term as it’s often associated with non-helpful information), and having a life. Might be an idea for my next blog post, hmmm….

#7 The Constant Worry

Similar to parenthood, caregiving involves a lot of worry over those we care for. There are just so many things to worry about…

  • Will my loved one get worse?
  • Will this get harder?
  • What if I can’t always watch?
  • What if something happens when I’m not there?
  • What if we can’t afford to live?
  • What if I’m tired and miss something?
  • What if they don’t call back for that appointment?
  • Did they even make the referral like they said?
  • Did I fully understand what the doctor told me?
  • Etc.

So many valid concerns and so many worries circling in our heads. We might be smiling and enjoying small talk with a friend while running errands, but in our minds these worries remain, constantly nagging at us and making us tired.

#6 Mountains of Poor Advice

Okay non-caregivers, take note of this one. It can be hard to offer support and encouragement when you really don’t understand what the other person is going through. But your words really are important (especially considering a caregiver’s limited interactions with people other than the loved one they are caring for). So let me tell you what advice is simply not helpful in any way, and you can stop giving it.

  • You should take care of yourself  [This is not helpful at all. Every caregiver can think of a response to this: Yeah, how?]
  • Why don’t you just get help? [Why didn’t I think of this before? I’ll go right to the caregiver helpers office…]
  • You shouldn’t get married/You need to kick them out/You guys should separate [Don’t tell me to give up. If I want to do that I’ll get there on my own. Help me to succeed.]
  • You’re spoiling him. Let him do it. [I’m the caregiver, I know his abilities and difficulties thank you.]
  • It’s probably nothing. [If a caregiver is concerned, please don’t minimize the concern. This just brushes it off, and the topic is now closed, alienating the caregiver.]

Caregivers need to be heard. They have so much stress and uncertainty, and when they share that with someone it’s not because they are looking for it to be ‘fixed’. What they’re looking for is support, encouragement, but really, what they need is to be heard and understood. That simple.

#5 Lack of Direction

Becoming a caregiver is a really huge transition. For some, it might be an unexpected event, and there really is no clear direction on how you should go about it. There’s no how-to manual, no resource binder…it’s a lot of trial and error, frustrations, stress and open-ended questions.

Nobody can prepare you to become a caregiver. People cope with it in different ways…and though you might be able to think of things you would do different if you were in the same situation, please remember that unless you’re there, you don’t really get it. Not really. Your love, support and encouragement will help a lot more than your advice and judgement.

#4 Assisting with ADL’s

Caregiving isn’t just about big sacrifices and the big, difficult decisions. It’s also about all the little things that add up in a day. All the little things like;

  • Helping a loved one with their morning routine (brushing teeth, making breakfast, helping them get dressed, helping them get clean)
  • Helping them get around (transportation, holding their arm when the ground is uneven)
  • Helping them out around the house (chores, errands, upkeep)
  • Helping them out financially (bank appointments, bills, taxes, applications, purchases)
  • Working with professionals to advocate for them (doctors, nurses, therapists, lawyers, social workers, dentists, specialists, etc.)
  • Giving reminders, queues
  • Participating in planning, organization
  • Making sure they are safe
  • Offering distractions, comfort, empathy etc…when needed

Activities of daily living involve so many things, and though people might be able to little or a lot for themselves, just know that the caregiver is helping with so many little things alongside the big things. This is the part that many people fail to see, and therefore they are unaware of how big of a job it really is.

#3 Scheduling Nightmares

I didn’t realize that becoming a caregiver would make me a secretary. I think my job title should be: Caregiver & part-time Secretary, because I’m literally on the phone Monday-Friday scheduling transportation, appointments, rescheduling things, trying to fit things into our hectic calendar…

Things change so often that it can be hard to keep up sometimes. And that’s just with my husband’s schedule! (As I write this now, the doctor’s office is calling). Never mind that I’m also trying to arrange things for myself and our daughter. For all you caregivers out there juggling all those schedules, I salute you. Keeping up the pace and making changes all the time, while keeping your sanity…It’s like standing on a surf board and riding the waves, hoping you won’t fall and have to get back up again. But if you do fall, you will get up, and even if no one notices, I’m sharing it with the world now and telling you you’re a champ.

#2 Advanced Prep Work

Caregiving requires a lot of thinking ahead, especially if the affected person has disabilities. Things like;

  • Will there be a lot of walking involved?
  • Will there be stairs? Will they have railings?
  • Will there be a lot of people present?
  • Will the ground be uneven or will the location be accessible?
  • Will fatigue make a certain activity challenging today?
  • Will we need to plan for rest periods?
  • Are there bathrooms nearby? Are they accessible?
  • Is the schedule too fast paced?

This might involve calling locations beforehand to ask these kinds of questions or planning to bring equipment (like a walker, walking sticks or a wheelchair) that might not need to be used for shorter distances. There are many judgement calls to be made. Something as simple as going out to do groceries can become quite complicated at times depending on the situation. Sometimes it’s like trying to pack for a trip, not knowing what you’re going to find when you get there.

#1 Dealing with Frustration

Okay so if you’ve just skimmed down this article only reading the titles, I get it, but this is a huge part of being a caregiver and we feel a lot of guilt over it at times…

– We get frustrated. [Like really, crazy frustrated] –

– Our loved ones get frustrated. –

There is frustration rumbling around the household on a regular basis. We get frustrated for many reasons such as;

  • Our loved one might lack awareness, repeat themselves, have behaviours that we don’t know how to handle
  • We are trying to get our loved one taken care of and things don’t always go at the pace we’d like them too
  • Appointments get cancelled, things get missed
  • We’re running on empty; hungry, tired, lonely, stressed
  • Other people just don’t get it
  • We get poor advice and it drives us nuts
  • Sometimes it seems like professionals or organizations want to take advantage of us or our loved ones
  • There doesn’t seem to be enough resources and support
  • etc. etc. etc. etc. etc.

And then our loved ones get frustrated for many reasons such as;

  • They can’t do things that they could do before
  • They don’t understand their condition or their limitations
  • They can’t express themselves the way they want to
  • They feel as though they have no control
  • They resent that the relationship with their caregiver has likely changed
  • They miss being independent
  • They need a structured routine and have difficulty when it gets disrupted
  • They’re hurting
  • They feel lonely, secluded, misunderstood, ashamed, disappointed, bullied, guilty, useless, tired…
  • etc. etc. etc. etc. etc.

Imagine having all these feelings swirling around the house, nobody really talking about it, no outlet, no social life or escape from it… These are ten things that go on in our lives that non-caregivers might know about, but can’t really understand. Caregiving is a massive job; one that involves the well-being of 2,3,4,5,…x amount of people at the same time. So the way you interact with us matters. Whether your grumpy or friendly matters. Whether your helpful or judgemental matters. And that’s why I wanted to let you into our world a bit today and show you that despite our exterior demeanour, we are working through some heavy stuff.

But that’s what love is.

 

Choosing Your Morning

My cats have a bad habit of getting into spats at 5,6,7 o’clock in the morning. They run up and down the halls, the pitter patter of their feet loud against the hard wood and meow as though to tell us we we’re missing something important. On most days, I can just ignore it and go back to sleep. Baby doesn’t even bat an eyelash. But my husband, it drives him nuts.

It shocks me that he can even hear it. When I bring baby in to nurse during the night, she can be wailing beside his head and he doesn’t wake up. But a cat meow’s and he’s up in an instant, angry and grumpy and talking nonsense about getting rid of the cats.

This morning he was ranting in bed, so I got up. It’s not like there was anything I could do about the cat’s behaviour, but when I got into the living room I saw the most beautiful sunrise outside. The sky was a beautiful mixture of pinks and purples, a true sight to start off the day. I hurried my grumpy husband out of bed to the window.

When he got there, I told him to look. I could see his eyes searching as he kept asking: “What?” . I told him he was looking too hard, that it was right in front of him. He finally went: “Oh, the sunset?” I told him yes. I told him to look at how beautiful the sky was. He seemed to simmer down a little.

Now that he was calmer I told him he had two choices:

  1. To be grumpy the cats woke him up
  2. To be grateful

He looked at me as though I was crazy of course.

“Grateful that the cat’s woke me up?” He asked. I told him no. Grateful that he got to wake another day and see a beautiful sunrise. He was quiet.

Bad mood conquered.

I wanted to share this story because I’m a big believer that our perspective colours our entire life experience. I think sometimes we just need a little nudge from someone we love to get back on track when we’re not seeing things clearly. Watching my husband’s playful mood following our conversation made me happy.

If you’re going to have a great day, you have to start it off strong. None of that ‘morning person’ BS. That’s just an excuse to be miserable. Choose to be positive and see things in a positive light, and it changes everything. It really is that simple.

Have a great day.

What’s your hurry?

 

While perusing Pinterest a couple nights ago I came across this quote:

Most humans are never fully present in the now, because unconsciously they believe that the next moment must be more important than this one. But then you miss your whole life, which is never not now. -Eckhart Tolle

How true it is that we often want to fast-forward through our lives to moments we think will be the most gratifying for us. I know I’ve done it- wanting to hurry through the night because I was leaving for a trip in the morning or wanting a certain shift at work to fly by so I could go home and do whatever…

But as Eckhart so eloquently stated, always looking forward means we miss things that are happening right now; right in front of our eyes.

For example, my husband and I just got back from a fantastic trip to Arizona with a group. Some of the group members were younger than us, and did not have children or disabilities slowing them down. We spent a lot of time trying to keep up with everyone, which was difficult but worth the experience of the trip. They were a great group of people, but they were in such a hurry!!

  • Driving before we could even get buckled up (every time)
  • Rushing us through nursing feeds for the babe while out
  • Walking ahead of us when going to a restaurant
  • Complaining about the wait times at restaurants
  • Wanting to jump from one activity to the next instead of checking out everything at one location

I totally understand that they wanted to make the most of their time in Arizona, but it was kind of a relief for us when we all split up and my husband and I could do things at our own pace. We are slow walkers because of Jay’s balance issues, but we also like to see every little thing. When we went hiking, we weren’t doing it to get to the end; we stopped to look at the plants, take photographs, rest, enjoy the scenery. When we checked out the downtown area we visited every shop, looked at paintings and souvenirs, and chatted with people. While we were at the restaurant we were just glad to be among friends in a new place.

We haven’t always stopped to smell the roses. We used to rush things too (and still do here and there). But now that my husband moves so slowly (and that we have a baby with us) we definitely take more time to do things. And what I’ve noticed is, since we’ve been forced to slow down, we’ve begun to see more.

It might sound weird, but I’m kind of grateful that my husband’s disability has forced us to slow down- I’ve never been able to fully experience things the way I do now.

Now I can take the time to really enjoy things. I don’t want to be somewhere just to cross it off some imaginary bucket list; I want to observe, and hear, and taste, and really be exposed to everything happening right there in that moment. Otherwise, what’s the point?

Plenty of people miss their share of happiness, not because they never found it, but because they didn’t stop to enjoy it. -William Feather

Your experiences really are what you make them out to be. It’s fascinating how much our perspective can shape the way we see things. The way I figure it, you can see the things around you, or you can look at the things around you. The two are not the same. One is passive, one is active. You’ll see so much more if you actually look.

But are you willing to take the time?

Pursuit of happiness

Are you happy?

I don’t mean on special occasions, or when everything is going your way. I mean on a general basis, are you a happy person?

It’s a loaded question, I know. But an important one. So important, because whether you want to admit it or not, you are not guaranteed any time in this life. As one of my previous coaches Patrick Mathieu likes to say, we all have an expiry date. And yet, as a society, we LOVE to waste time.

  • Procrastinating
  • Waiting for the “right time”
  • Hoping things will just fall into place
  • Waiting for life to just turn out the way we want it to, simply because we wish it to be so
  • Being unhappy yet unwilling to do anything to change it

The truth is, happiness isn’t going to ‘just happen.’ You can’t just stumble upon it, you can’t buy it, you can’t pretend you have it when you don’t…

If you truly want to be happy, you have to choose it, and acquire it for yourself (and yeah, it will probably require a lot of effort on your part).

I was watching a documentary on Netflix with my husband on this very topic last night, appropriately titled: Happy. It was pretty fascinating and definitely an eye-opener (I highly recommend it). One of the stories that hit me the hardest was of a man in India. This man was a hand rickshaw puller.

He had no shoes, and pulled people everyday (running not just walking) in the heat, the rain, etc. He said sometimes people who were intoxicated would treat him badly. After a long day of manual labor, he would go home to his house which was built with tarp (literally, the walls were tarps). He described rains blowing into the house at times.

But do you know what this guy said when he was asked if he was happy?

A very emphatic yes. 

He said seeing his children’s faces when he got home from work made him happy. He said he had a good house (the tarp one), the air circulated well (no doubt), and he had great neighbours that they were friends with (I don’t even know my neighbours). This man had very little; not even a pair of shoes.

But man was he happy. And his face lit up when they asked him about it. He was truly, genuinely happy. Even though work was tough. Even though they struggled. Even though things didn’t always go his way. He was happy. In his eyes, his basic needs were met, he had a roof over his head, he had a job, he had a great family and supportive neighbours and friends, what more could he want?

He didn’t feel that he was entitled to more because he worked hard. Seriously though, what more could he need? Fancy clothes? A big house? Tons of money? Do you think that would make him happier? I doubt it. He’s already there.

So why do we think that buying stuff and having more and more money will make us happier? Over here in Canada we live a very different life. We’re not walking barefoot in the streets carrying people all day. We have choices! In fact, we’re balking at jobs simply because they pay minimum wage or because they aren’t easy, or because they don’t offer us the lifestyle we want. We always want more. More money, more stuff…because once we get more we will be happier right?

Or not.

The problem with that logic? We never really get to “that place”. The perfect amount. The right amount of money, the right amount of material items, the right house, the right setup. We focus so much on making money that we distance ourselves from those we love, only making surface connections that lead to deteriorating relationships. We isolate ourselves in our pursuit to find success and wealth. And then we wonder why we are still so unfulfilled.

I know we need money to live, but it’s how much that is the debatable question. If we’re looking to be happy, a lot of money isn’t necessarily going to do that. A nicer car, a bigger house, becoming a well-known person probably isn’t going to get you there. Myself, I have been waiting and waiting to move into a bigger home so we can have more space for everything. But these past couple of weeks, I’ve realized that maybe it’s not more space that we need, but less stuff. This realization has led to positive change for us, which you can read in my previous blog post about minimalism.

And if you find all this to be rambling on, I’d be satisfied if you just thought about this:

Are you happy?

 

 

 

Minimalism-how it has brought me intense relief.

The other night I was perusing Netflix for something interesting to watch, and I was in the mood for a documentary. I came across a title called Minimalism: A documentary about important things. I was intrigued.

The documentary was about a lifestyle choice- a choice to live with less. Less stuff. Less material items. Shopping less. Owning less. Collecting less. This is called minimalism.

According to The Minimalists; Joshua Fields Millburn & Ryan Nicodemus (who created the documentary), minimalism can be defined as follows: 

Minimalism is a tool to rid yourself of life’s excess in favor of focusing on what’s important—so you can find happiness, fulfillment, and freedom.

The more I watched this documentary, the more excited I got. Was I going to throw away everything I owned? No. Was I going to live in a tiny house like some of the people on there? No. Would I ever be able to keep all my worldly possessions in one bag? Nope.

But something clicked. Something told me that I needed to see this. We are currently 4-5 weeks away from a move and I’d been itching to get into our next home, which will be significantly bigger than our currently one.

  • A home with more space.
  • A home with more storage.

We were finally going to have somewhere of our own where we could open every box after moving 6 times in the last 3 years.

But when I thought about it, I realized I was going to be packing up all kinds of stuff that I didn’t need, or want, and that the thought of dragging all of this sh*t (excuse my language) had been weighing me down without my even realizing it. As soon as the documentary was over, I jumped out of bed. It was around midnight, but here I was looking at everything in our small home and considering it. Did it bring me value? Did I really need or want it?

The majority of stuff I got rid of was clothes. Clothes that didn’t fit. Clothes I didn’t even like. Stuff that was just sitting around, taking up space, making me feel cramped. Kitchen items we didn’t use, or that we had several of. Trinkets that served no purpose. Eventually I filled up 4 large garbage bags and the next day promptly dropped them off to be donated. Once we move, I’ll be combing through our things again.

The feeling I had after packing up those four bags was one of intense relief. Every time I put something in the bag and made a little more space in our home I felt like a weight was lifted off my shoulders. It was like I’d started drowning in stuff. I realized that even with a bigger home, having things you don’t need just makes you feel crowded. And I started to realize just how crowded I felt.

These last few months I’ve been so irritated when anyone tried to sell me something. I changed the radio station when an ad would come on for example. It upset me that everywhere I went there were ads and marketing campaigns and people trying to get me to buy things I didn’t need, and I had no clue why it suddenly bothered me so much.

If you check out their website, Joshua and Ryan explain how their movement came to be. On their documentary you can see them engaging with people, inspiring them, and even hugging them (they’re big huggers- not something you see a lot of these days). I have to say, I’m pretty impressed. I definitely agree that our love of stuff has begun to trump our love of people. The documentary had one scene where these two women were physically fighting over something (at a black Friday event I think?) and it was pitiful to watch.

My home is where I spend most of my time as a caregiver and new mom. I need it to be a place where I feel safe, in control, happy, organized and peaceful. I never really considered that having too much stuff could get in the way of that. Shopping is something I enjoy. But the high from acquiring something new is temporary- a temporary high like you get from drinking alcohol or eating junk food. It wears off.

Nothing you buy will bring you long-term happiness. Therefore, money will not bring you long-term happiness. So why do we try to make as much of it as possible? 

Happiness is not owning mansions, or boats, or cars, or designer clothes…happiness is a choice we make despite our circumstances. It’s living a life according to our values. It’s being able to see the good in our lives and appreciate that good. Minimizing all the clutter in life can help us really see those core values to help us live accordingly.

So thank you to The Minimalists. I think decluttering my life so that I only surround myself with what I truly want and need is a step into personal growth and accomplishment. And I fully intend to work on this in 2017 (because the New Year buzz might be over, but I’m still looking to make it an awesome year!!).

I feel so much better already.