Why Caregiver Support is So Elusive

There’s no denying it – caregivers need help.

The role often isn’t one we can do alone, especially if we’re providing 24/7 care for a loved one with considerable needs. Even if the practical and emotional tasks seem bearable at first, caregivers start to get overwhelmed as time goes on.

That’s because there isn’t enough space for you to rest and recover. There isn’t the time to do the things you need to feel good, including having your own interests and hobbies. Seriously, to stay resilient, it’s crucial to have some parts of your life that are still yours.

Plus, things add up, often in ways you don’t expect.

That brings us to the topic of the day – asking for help. Or, more relevantly, actually getting the help you need.

Let’s take a look at the topic, including some of the common perspectives on asking for help and what they mean in practice.

Two Schools of Thought

I spend a lot of time reading caregiving books and blogs – and I’ve noticed two general themes about getting help as a caregiver.

The first seems to place the blame on caregivers, saying they should be asking for help earlier and more explicitly. The second comes from caregivers themselves and voices the frustration of asking for help and not getting it.

Let’s delve into these ideas for a little, as there’s some interesting information under the surface.

It’s The Caregiver’s Fault

This first perspective feels like blame culture and is surprisingly common.

Authors who write about this claim that friends and family are all too willing to help, if caregivers would only ask. They point to possible reasons that caregivers don’t ask for help, like feeling guilty, thinking they can do it all themselves, or not recognizing their own needs.  

Other times, a book may provide a section on the importance of asking for help, such as the fact that caregivers can’t do it all and the issue of caregiver burnout. However, the details about actually asking for help are incredibly limited. We’re often told to ask, but given no information about how to do so.

As many caregivers know, simply asking for assistance isn’t enough.

There are also posts focusing on how and why caregivers refuse help. Such posts often gloss over legitimate reasons that caregivers mightn’t accept help (like when it comes from a sibling that is neglectful and might even put the senior at risk).

It shocks me how common this view is. Even when searching for information on why people don’t help caregivers, the top search results included responses like Why Some Caregivers Refuse Help. That idea is true in some situation, but certainly isn’t the whole picture (or even most of it!)

No One Wants to Help

The other perspective comes from caregivers, some of whom talk about how no one is willing to help.

This conversation often happens on caregiver forums (and likely in support groups as well). More than anything, it’s a complaint and an expression of frustration.

It can be true too.

Many families have a familiar dynamic where one individual provides the majority of care and support, while others seem to sit back and do nothing at all. That situation breeds caregiver sibling resentment and can be incredibly frustrating.

Even when this isn’t the case, caregivers often find that people don’t step up. You can ask until you’re blue in the

What’s The True Story?

So, we have two opposing perspectives here.

One is that people want to help, but caregivers simply aren’t asking, aren’t asking in the right way, or are refusing help. The other is that no one really wants to help. Perhaps they’re just paying lip service to the idea or are doing the bare minimum.

Both ideas can be true.

There are certainly times when friends and family members refuse to help. That might be out of selfishness or because they are overwhelmed in their own lives.

Other times, the caregiver mightn’t be asking or accepting help. This is most likely in the early stages of caregiving, when you feel like you can and should be able to do it all.

I suspect that most often the answer is somewhere in the middle – that other people want to provide help, but can only do so in some ways. Caregivers may also unintentionally be asking for help in ways that make things more difficult.

So, let’s look at ways you can improve the situation.

That said, there are always some people in the ‘won’t help’ camp. You may not always know or understand why they won’t help either. You may simply need to move on and find other avenues for support.

How to Improve Your Chances of Getting Help

Focus on Acceptance

Before we dig into the asking for help steps, there’s one crucial approach to consider – acceptance.

This idea comes from mindfulness work. It focuses on the importance of learning to accept things as they are, rather than emotionally fight against them.

Acceptance is a funny idea. It doesn’t mean that you think other people’s behavior is right or that you stop seeking change. But, it does involve learning to be at peace with the way things are – including the fact that people mightn’t help.

This helps for two reasons.

First, it decreases tension in you. Bitterness and resentment hurt you far more than your family and friends. These emotions can make an already difficult situation seem even more unbearable.

As part of this, you may need to consider that life and people are complicated. Things rarely work out the way we want them to or think they should. There’s a whole host of reasons for this. Some might be another person’s fault, while others link to factors that you may simply not understand.

Second, acceptance makes you more likely to get help.

This is partly because acceptance helps you be kinder and gentler, which people respond better to.

Acceptance can also make you less focused on precisely what help should look like. This is powerful, as family members probably won’t help in exactly the ways you expect. If you can be more open minded about the type of help you receive, you’re more likely to get support.

Ask Early, Ask Small

In an article on the topic, Donna Thomson from The Caregiver Space talks about the idea of training your support team.

This really is an excellent point.

Most people won’t have the confidence or emotional capacity to provide respite care to you or even to look after the senior on their own for an hour or two. The idea can be overwhelming for people who have never provided care before.

Similarly, those who know you are struggling may feel confused about how to help. They may make seemingly glib remarks about “ask if you need anything”, but never follow through with concrete help.

To get people to help with the big things, you’ll often need to start small, ideally when you’re not stressed to the max.

It also helps to put a limit on the request. For example, you might ask someone to help with cleaning once a month for six months. This helps them feel confident that they’re not over-committing.

This approach to asking helps your friends and family to become confident in being around your loved one and providing support. This increases the chance that they’ll be able to take on bigger requests later and that they’ll be invested in doing so.

Caregivers face a kind of double edged sword when it comes to asking for help. It’s tough to ask for help early on, as you don’t need it yet and may feel guilty. But, the longer you wait, the harder it is to actually get help.

Things get harder if you’re asking in a crisis point. But, here too, it’s important to keep the requests small and realistic.

I know, I know… getting tiny pieces of help when you’re overwhelmed can feel incredibly pointless. Yet, this is how you build your support network. Asking too much too soon is liable to backfire.

Keep People Informed

Sometimes people don’t help because they have no idea what you’re struggling with. This is a common issue, as it’s easy to keep the challenges and complexities of caregiving to yourself until things become overwhelming.

But… if you can keep in the loop earlier, they have the chance to help before things ever reach crisis point.

Simply telling people may not be enough, especially if we’re talking about family members in denial. Here, you may need to help them understand in other ways, like by talking to the senior’s doctor.

Think About The Person’s Strengths

Another aspect is to match the support you’re looking for to the person’s strengths. For example, some people will be great at hands on care, while others might only be able to help financially instead.

Here, you may want to look at their life. What are they good at? What makes them happy? Someone who is highly social might be able to keep your loved one company and engaged while you take care of the housework, while someone who loves cooking might be able to drop in meals from time-to-time.

If someone can only help financially – use this to your benefit. For example, you could use their financial aid to hire an in-home caregiver for respite. Or, you might hire a cleaner, so there’s one less thing for you to do.

Recognize Limitations

When asking for help, remember that people will have their own limitations. Some may be intensely committed in their own lives and have little energy to spare. Others may seem to have the time, but lack the emotional capacity to do much.

The emotional side of things shouldn’t be taken lightly.

As we’ve discussed elsewhere, caring for an aging parent comes with a host of under the surface challenges, like confronting a parent’s mortality, dealing with an apparent role reversal, and family conflict. How people respond to these challenges differs dramatically.

Have Honest Conversations with Family Members

If family members aren’t stepping up, it’s important to take the time and work out why. This can involve having in-depth and honest conversations about what everyone is looking for, the definitions of best care, and how this can all be done better.

Sometimes the problem isn’t that your family doesn’t want to help, but that may think your parent should be supported in a very different way.

• One aspect of this is the debate between safety and quality of life (something discussed at length in the book Being Mortal). When do you focus on protecting the senior and when do you allow them their autonomy?
• Assisted living is relevant too. Some family members may feel that facility care is much safer. This is often the cause of sibling conflict, as some siblings may be willing to help pay for assisted living but are not willing to engage in hands on caregiving.
• Are family members aware of your loved one’s current health? Do they understand what’s likely to happen next and why so much support is needed?

Curiosity is a crucial tool in such conversations. This includes being curious about other people’s perspectives and your own. Doing so puts you in a place of learning, rather than trying to prove others wrong.

Who knows, your family may even help you find new solutions and approaches to the current situations – ones that are better in the long term.

Be Collaborative

Finally, it can help to be collaborative, especially when working with family.

This could involve holding some type of meeting or a few in-depth conversations. Instead of saying what you would like people to do, talk about the bigger picture. This is often more powerful and is less likely to lead to defensiveness.

For example, you might explain in-depth about your aging mother’s health, the current challenges, and how her condition is likely to progress. Then, you might talk about what you’re doing right now, including what is working and what isn’t.

The goal here is to find solutions together.

This could mean that other family members step up and provide caregiving support. Or, perhaps people come up with different approaches. Sometimes such meetings can even help you to see your own blindspots.

Final Thoughts

This is always a controversial topic.

Comment threads and forums are filled with caregivers who have struggled to find help, even when they’ve consistently asked in every way they can imagine.

And, truthfully, the advice in this post doesn’t guarantee you’ll get help.

Some people in your life may be unwilling to help no matter what you say. Others may be willing, but unable. Sometimes you’ll never even be let into the reasons why, leaving you feeling rejected and alone.

Despite this, it’s important to try and keep trying. Some people may surprise you. Some may not have realized that you needed help or that there was something they could do. Others may simply need support in learning how to help you.