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?
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.