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Caregiving is a common role. Countless people throughout the world end up caring for their aging parents, spouses, other family members, friends, or strangers. Yet, as important as the role is, the challenges faced by caregivers are often overlooked.
Indeed, there’s still far too little recognition of all that caregivers do for their loved ones or the toll that their role can take.
There is good news though.
Despite the under-recognition of caregivers, there are many tools and resources out there. There are services that can help financially or provide respite care for exhausted caregivers. There are places that teach the skills you need, along with information about how to balance the demands of caregiving with your own needs.
Many of the articles here at Kapok are written specifically to help caregivers find their feet.
In this post, we’re rounding up some of the biggest challenges faced by caregivers and talking about how you can overcome them. There are no perfect solutions, of course, but often finding the right information at the right time can make a huge difference.
So, let’s get started.
Challenges Faced by Caregivers
- Lack of Knowledge
- Caregiver Guilt
- Not Knowing When to Say ‘No’
- Running Out of Time
- Chronic Physical and Emotional Stress
- Sleep Deprivation
- Difficult Patients
- Family Dynamics
- Not Enough Money
- Strain on Other Relationships
- Lack of Privacy
- Not Enough Assistance
Lack of Knowledge
Professional caregivers often have considerable training. They’ve been taught plenty of skills and get to go home at the end of the day, giving them a much-needed respite.
Family caregivers are in a very different position.
Few have any specialized training. Many didn’t even plan to be a caregiver. The whole thing just sort of happened.
Even if you knew what you were getting into at the beginning, things have probably changed since then. You might be dealing with your family member’s cognitive decline or their increasing inability to take care of themselves.
Most of the time, family caregivers are simply making it up as they go along.
Doing so is stressful, scary, and can even be dangerous.
What You Can Do
There are two general solutions to a lack of knowledge.
The first is to learn more. There are specific caregiving training courses out there, ones designed to help family caregivers to support loved ones. Some may be run in your local community, but if not, there are online options.
If time or transport is an issue, online services might be the best approach.
The second solution is to reach out.
Caregiving can require some specialized skills at times, like wound care, lifting the senior safely, giving injections, and responding to dementia behaviors. You may be able to learn some things, but not everything.
It’s important to recognize when it’s time to reach out. Look into your local resources. Ask around. Ask on forums. Find out what types of support there are. You might be surprised at what you find.
Caregiver guilt is a common issue. Many of us feel like we should be doing more or that we’ve failed in some way.
- You might have made a bad decision, perhaps even one that landed the senior in hospital.
- You may have been ‘too’ lenient with them, allowing them to do anything they wanted, even at the expense of their health.
- You may have had moments of resentment or anger. Perhaps you briefly wished that they were dead.
- You might be taking time for your own wants and needs, rather than always putting the senior first.
What You Can Do
The first thing to understand is that caregiver guilt is often misplaced. We often feel guilty because we were expecting too much of ourselves to begin with.
Caregiving is hard. It can be overwhelming at times and may push you to your limit. And, when you’re pushed that hard, you’re not going to make the best decisions.
You’re human. You’re not going to get it perfect all the time. That isn’t something to feel guilty about.
Instead, you should be proud. You’re doing incredibly well in a difficult situation.
Also, taking care of yourself is important too. We’ll touch on that idea more shortly. For now though, know that you cannot care for another person well without also caring for yourself. The more you try to push yourself aside, the more you’ll struggle, and the less effective you’ll be as a caregiver.
Not Knowing When to Say ‘No’
Difficulties with saying no is one of the most common challenges faced by caregivers.
Some of this stems from caregiver guilt, as you feel bad for saying no to your loved one.
If you’re caring for an aging parent, the parent-child relationship comes into play too. It may feel like you should always say yes, as your parent gave up so much to care for you.
Caregivers who can’t say no often end up exhausted. Burnt out. Their own needs aren’t being met, so it becomes harder and harder to support their loved ones.
You might also find that your relationships are compromised. Marriages have even ended because one partner places their aging parent above everything else, including the rest of their family.
And, to make matters worse, always saying yes is rarely good for the person you’re caring for either. You’re simply teaching them to be excessively dependent.
What You Can Do
To solve this problem, you need to draw boundaries.
I won’t lie. Drawing boundaries with an aging parent takes time, patience, and work. Doing so is also essential for your health and theirs.
We’ve talked about boundaries in another post. For more in-depth information, check out the book Setting Boundaries with Your Aging Parents by Allison Bottke. This book focuses on the importance of boundary setting and how to do it in practice, with the people you care the most about. You can apply the same principles even if you’re a caregiver for someone else, rather than a parent.
Running Out of Time
When I was a caregiver, the thing I wanted the most was more time. Anything would have helped, as there were never enough hours in the day.
Invariably, some important things had to get pushed out and out, to the point that they got lost altogether.
What You Can Do
You can’t increase the length of the day (and sleeping less is NOT the answer).
What you can do is manage your time better. The better you are at managing time, the more time you can free up.
Here are a few important ways to get started:
Make self care a high priority
Caregivers often put their own needs last on the list of things to do. This gets to be a problem very quickly, as the things at the bottom of your to-do list rarely get completed.
You need to put yourself at the top of the list instead – because when you’re doing well, you’re much more efficient.
We talk about this idea in our post on the Capacity Model. Basically, the more burned out you are, the more you’re struggling, the harder everything is. Life takes more effort. You make more mistakes and you’re much less efficient.
When you make your needs a priority, you’re changing the equation. You’re filling your own tank first and suddenly you have much more to give.
Decide what is actually essential
One of the biggest shifts I made as a caregiver was realizing that many things weren’t as urgent or as essential as I assumed.
Like… vacuuming every week or washing the dishes after every single meal. Most household tasks have some inbuilt flexibility. Most of life does, for that matter.
Take the time to decide what really does matter to you. How often does it need to be done?
Think about how much support your family member actually needs as well. As caregivers, we often try to make our family member’s life as easy as possible. Yet, our job is to support them, not make their life perfect. Sometimes doing so means that you help with them what they need, but not with all of their wants.
Use lists and planners
Tools like diaries, lists, and planners help immensely with time management, even if your life is very unpredictable.
For example, rather than going out every time you need something, you might choose to only do a run into town a couple of times per week and do everything all at once. Making lists will help you to make sure you don’t miss anything.
Lists can also help you to work out your priorities. With them, you can work out where to focus your time. We’ve highlighted our favorite tools and tricks in this post. We’d love to know what approaches you’ve found too.
Chronic Physical and Emotional Stress
Whether caregiving is easy or difficult for you, it’s an ongoing task. Day after day. Week after week, even year after year. It can drain on you, leading to emotional fatigue, along with physical health problems.
In fact, caregivers often suffer from mental health issues, including depression and anxiety. Some get to the point where they’re doing worse physically than the people they are taking care of.
What You Can Do
You can’t fully remove the stress of caregiving, but you can take steps to make it more manageable. The main way to do this is exactly what you’d expect it to be – taking care of yourself.
Self-care sounds like a tired piece of advice, I know. While most caregivers already know that they need to meet their own needs, doing this in practice is an entirely different story.
We talked about an unusual approach to this challenge in our Secret to Self-Care post. This one’s worth checking out even if you think you know all there is to know about self-care.
Getting enough sleep as a caregiver is tough. Perhaps you’re stressed about what’s happening or there are tough decisions to make.
Or, perhaps you’re getting woken up regularly in the night.
What You Can Do
Sleep is crucial, so you need to find ways to get the rest that you need. The solution will depend on your situation, but here are a few approaches that can help.
- Consider an alternate sleep schedule. These are sometimes used to promote efficiency, but they’re also relevant in cases where a full night’s sleep simply isn’t possible.
- Don’t overlook napping. Napping isn’t for everyone, as it can make it more difficult to sleep at night and promote unhealthy habits. Still, naps can be powerful too and they’re a way of catching up on the rest you need.
- Set firm boundaries about your rest times, so that family members don’t disturb you unless there’s a dire emergency.
- Practice good sleep hygiene as much as you can. This includes being consistent with your bedtime and keeping the room fully dark. Such patterns increase the chance that you’ll sleep well.
- Be cautious about what you eat before bed, as some foods can keep you awake.
- You could consider sleeping pills or melatonin supplements, but talk to your doctor about these first, as they can make sleeping naturally more difficult.
- Experiment. Try these approaches and others to see what works for you. You could try using a gadget like a Fitbit to track your sleep cycles and see when you sleep well and when you don’t. Doing so makes it easier to identify what behaviors and situations promote good sleep.
There’s no nice way to put this. Some people are difficult to care for. That’s all there is to it. Sometimes this is because of their personality, while other times it might be due to a health condition (like dementia) or fear of aging.
What You Can Do
We’ve written about difficult parents in multiple posts, so you can check those out for more information.
However, there are a few guiding principles to consider:
- Look at why they’re being difficult. What’s underlying their behavior? Once you have a sense of this, you know where to start looking for solutions. For example, if their difficult behavior is related to dementia, you’re likely to need to change your approaches. But, if the behavior is related to their fear, they should be able to change.
- Communication is important. Always. Sometimes this involves having difficult conversations. While it’s tempting to avoid those conversations, it’s important to have them and work things out.
- Don’t make assumptions about what others know or why they’re behaving in a certain way. Humans are complicated and we all come from very different places. Sometimes the main problem is not recognizing these differences.
- Decide on your flexibility. If your family member is going to be this way no matter what, you need to decide where your boundaries are. What are you willing to put up with? What aren’t you? What happens if they cross your boundaries?
Some caregivers choose to stay supporting difficult family members, even if nothing is ever likely to change. Doing so is possible, although you need some bravery and flexibility, along with a large ability to forgive.
Others choose to leave instead.
Ah families. They’re often complicated and caregiving can make things so much worse.
Some caregivers deal with overly involved family members, ones who are often judgmental or have conflicting views about what should or shouldn’t be done. Or, perhaps your family members are disengaged instead and aren’t willing to help, no matter what you say.
There are endless variations, but you get the picture.
What You Can Do
Once again, communication is important. If this is an area that you’re getting stuck with, check out the book Difficult Conversations. That book provides important insight into ways to deal with conflict, particularly when people are coming from very different points of view.
It’s also important to recognize that you mightn’t be able to change a family member’s approach.
For example, in a family where a parent was difficult or even abusive, one child might feel a duty to be a caregiver, while another may choose to cut all ties to protect their own mental health and their family life.
Neither approach is inherently right or wrong. They’re different ways to respond to a challenging situation – and it may be that neither party is willing to budge.
If things aren’t changeable, then you need to learn to do the best with what you can. Work out how to draw boundaries, when to engage with your family members, and when not to.
Not Enough Money
Life gets expensive fast – and there often isn’t enough money to go around. This often gets worse when you’re caregiving, as there are so many added expenses.
I remember this with my partner. We started to need extra things on top of our normal bills, like waterproof pads for the bed, new sheets every few months, bandages, pain killers, and the like. Most things weren’t terribly expensive, but they added up, straining our already tight budget.
What You Can Do
There’s no magic wand solution to solve your financial problems. Still, there is support out there, along with approaches that can make life easier.
- Find ways to cut costs. This includes reducing electricity and water use, paring your food budget where you can, and finding ways to save on entertainment.
- Look for discounts. Seniors are often eligible for discounts and these aren’t always advertised. Don’t be afraid to ask. You never know what you’ll find.
- Talk to family members. Some may be willing to chip in financially, especially if they’re not helping with the practical side of caregiving.
- Look for financial assistance. There aren’t many federal programs to support caregivers, but there are often local programs that can help. The NCOA’s BenefitsCheckUp can help you to find the programs in your local area.
- Can you get paid? Some states will pay adult children to care for their aging parents or other family members. There are other approaches as well. Check out this post for more information.
Strain On Other Relationships
Caregiving can easily end up taking over your whole life, giving you little time and energy for anything. When this happens, your other relationships often suffer or are even lost entirely.
This often happens in marriages, especially when one partner is more emotionally invested in caregiving than the other.
What You Can Do
The answer to this challenge is simple in theory and difficult in practice – you need to not make caregiving your entire world. You need to make space for the other people in your life too, no matter what is going on for the person you’re caring for.
Sometimes this will mean saying no to their requests, to spend time with other people.
For example, you might not visit your aging mother when she calls because it’s date night at home. Drawing this type of boundary can be difficult at first, as many aging parents will take offense. But, they’re not your whole world and shouldn’t ever be.
For your health, your other loved ones, and even the person you’re caring for, it’s critical that you have other relationships. Those connections are what will keep you going.
Lack of Privacy
Some caregivers run into issues of privacy too, especially when they live with the person they care for. This becomes even worse if you’re supporting someone who doesn’t respect physical space or always wants to be around others.
For example, one writer on caregiving forums talked about an aging mother who spent most of the time sitting in the kitchen, wanting to make conversation every time someone entered. The situation got to the point where family members started avoiding the kitchen or even going home, as they needed space.
What You Can Do
Having space and privacy is incredibly important. To do so, you may need to draw firm boundaries.
In many situations, making these clear to everyone else may be enough. For example, you might have a room or part of a room that is just yours. No one else is allowed to use it.
Other times, you might need to use a door lock or something similar to ensure privacy.
I was lucky as a caregiver in that I was the only one in my household that could easily go up stairs. So, I was always left alone when I was in my office. My partner or his mother would yell up the stairs for me sometimes, but I could be confident they’d never come up.
You might also need to get away from home regularly. Carve out time and space that’s just for you. Doing so might involve going on a walk or even gardening in the backyard.
However you do this, making space for yourself is very important. Make it a priority regardless of what other people think.
Not Enough Assistance
Caregivers often struggle for time, money, and energy because they don’t have enough support. They’re going it all alone and there isn’t enough of them to go around.
Doing so can quickly become overwhelming. How could it not?
What You Can Do
The most simple answer is to ask for more assistance. This includes looking into programs in your local area and seeing what they offer. You may find some free or inexpensive options for support or respite. Perhaps there’s a senior center that will entertain your family member for a few hours each week while you get some much needed rest.
Asking family members is important too.
One way to do this is to be very specific. Rather than asking for ‘help’, ask them to do one specific thing, something that fits their situation and personality. Sometimes this might be contributing financially, as they don’t want to get involved practically. Other times it might be asking a brother to help with the garden or to organize a new bed.
Equally important is learning when and where to step back.
Take a good hard look and think about what is actually needed. Where can you cut back the support you’re providing? Can you visit your parent every few days instead of every day? Can you turn to Meals on Wheels sometimes, instead of always cooking for them?
Don’t be afraid of imperfection either.
Many caregivers don’t get enough assistance because it’s hard to give up control. Someone else mightn’t get things perfect. They probably won’t.
That’s okay though. Life is imperfect.
Should You Remain a Caregiver?
If caregiving continues to be an overwhelming challenge, one that drains you mentally and physically, it may be time to ask whether you should continue in the role.
That question might sound harsh. Your aging parent needs you, right? How can you abandon them?
But, there are a few things to remember…
- First, need is a heavy word and it’s not always accurate. Even if your parent does need some type of support, they mightn’t need the amount of focused support you’re providing. There may well be other ways to support them, like helping financially from afar or hiring someone to do some tasks and stepping back yourself.
- Second, you matter too. It’s easy to get caught up in caregiver guilt and think that you should always be doing more than you are. Yet, stepping back is sometimes the only way that you can protect yourself and stay sane. Doing so is incredibly important.
- Third, you don’t have to be a caregiver. Many people choose to care for aging relatives, but plenty of others don’t. For some, the challenges faced by caregivers are simply too much.
We’ve run through many of the challenges faced by caregivers and we haven’t even hit them all. From this list, it might seem like caregiving is an overwhelming role, one that always leaves you exhausted and gives you little for yourself.
However, that’s not true.
Caregiving can also be a joy. It’s a way of giving back to those who supported you and you can thrive within it. We talk about how to do so much more in our upcoming book, tentatively titled: Not Just Surviving, But Thriving: How to Care for an Aging Parent, without Losing Yourself in the Process.
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