Why Do Caregivers Wait Too Long to Ask for Help?

Caregivers often wait too long to ask for help because caregiving happens gradually, they become accustomed to carrying an increasingly heavy load, and asking for help can feel like admitting they are weak, incapable, or somehow failing the person they love.

I see this professionally all the time. Right now, I am also watching it happen in my own family.

My mother had hip surgery in June. When I call to check on her, she often tells me how badly she is hurting. Then I ask the obvious question: "What have you been doing today?" That's when the list begins.

She exercised. She went to the pool. She walked somewhere to visit friends. She went to dance class. And, of course, she took care of my dad.

Recently, I asked why in the world she went to the pool and went to dance class on the same day when she is still recovering from hip surgery. Her answer told me everything.

"Because it makes Dad so happy to go to dance class, and I have to make sure that he is happy."

Getting my dad to dance class isn't exactly a matter of grabbing the car keys and heading out the door. He can't stand up on his own.

My mother has to get him into his wheelchair, take him down a very steep ramp, transfer him from the wheelchair into the car, load the wheelchair and everything else they need, drive to the dance class, unload everything, transfer him back into the wheelchair, push him up another ramp and get him settled.

Only then does she get to enjoy any of those fun country line dancing songs. And remember, she is recovering from hip surgery.

"Mom, of course you're hurting."

At some point I had to explain that perhaps one exercise program in a day would be sufficient. Three is not necessarily better.

The funny part is that if you ask my mother about my dad's health, she will tell you that he is really healthy. "I think he's going to live another ten years."

I usually roll my eyes when she says this, thankfully while I'm in my car where she can't see me.

But I know what's underneath her words.

My mother doesn't want to be a widow.

And suddenly her behavior makes a lot more sense.

What Stories Do Caregivers Tell Themselves?

After more than thirty years in healthcare, I have learned that people can endure an extraordinary amount when they love someone.

The problem is that caregiving rarely arrives all at once. There usually isn't a morning when someone wakes up and announces, "Today I became Dad's caregiver." It happens one task at a time.

First, you drive him to an appointment.

Then you start organizing the medications.

Then you help with the shower.

Then you start getting up during the night.

Then he needs help getting to the bathroom.

Then you stop leaving him alone.

Then you begin turning down invitations because finding someone to stay with him is too complicated.

Eventually, your entire life has changed.

But because it happened little by little, you adapted. You created workarounds. You made excuses. And somewhere along the way, you stopped noticing how much of yourself you were giving away.

By the time we meet many caregivers at Aspire Hospice, they are exhausted. But they often don't say, "I'm exhausted because caregiving has become more than I can handle alone."

They have another explanation.

They're tired because they didn't sleep well last night. Their back hurts because they moved wrong. They haven't seen the doctor because they've been busy. They haven't exercised because there hasn't been time. They haven't seen their friends because everyone is busy.

There is always a reason.

Meanwhile, the caregiver's own health and personal needs slowly move to the bottom of the list. That's the part that worries me.

Why Is It So Hard for Caregivers to Ask for Help?

I think part of the answer is that we don't like airing our dirty laundry. We don't want other people to see that life has become more than we can manage. There can be something almost shameful about always being the person who needs something.

We want to appear capable. Independent. Strong. Especially when we have always been the one taking care of everybody else.

Caregivers also tell themselves stories:

"Mom isn't that bad yet."

"We're managing."

"She doesn't want strangers in the house."

"I promised him I would take care of him."

"I don't want to burden my children."

"Hospice means we're giving up."

And sometimes, "I should be able to do this myself."

I understand that feeling more than I would like to admit.

Sometimes people simply don't tell anyone what's happening. And sometimes they try, but nobody is really listening.

What Happens When Nobody Notices the Caregiver?

This is something I think we need to talk about more. People can be surrounded by other people and still be remarkably alone.

I have experienced this myself. I can be dealing with something significant in my own life and realize that the people around me have absolutely no idea. Sometimes we are so busy talking, rushing, working, solving our own problems, and thinking about what we are going to say next that we fail to ask a very simple question: "How are you doing?" And then actually listen to the answer.

I think this can be particularly difficult for older adults. Their social circles may have become smaller. Friends may have died or moved away. They may no longer work. Driving may have become difficult. Getting out of the house may require tremendous effort.

Their world can slowly shrink at exactly the same time their caregiving responsibilities are growing. Sometimes nobody realizes how bad things have become until there is a crisis.

Is Hospice Only for the Last Few Days of Life?

No. Hospice is not intended only for the final few days of life.

This misunderstanding is one of the reasons families may miss months of support that could have made an incredibly difficult season more manageable.

Medicare's hospice benefit is generally available when a hospice physician and the patient's attending physician, if applicable, certify that the patient is terminally ill with a life expectancy of six months or less if the illness runs its normal course, and the patient chooses comfort-focused hospice care for the terminal illness rather than Medicare-covered treatment intended to cure it.

Six months is very different from six days. Hospice is not just about what happens at the moment someone dies. Hospice is about supporting the patient and the people caring for that patient throughout the end-of-life journey.

Depending on the patient's individualized plan of care, that support can include nurses who assess and manage symptoms and teach the family what to expect. Hospice aides can assist with personal care such as bathing and grooming. Medications related to comfort and symptom management for the terminal illness can be provided through the hospice benefit. Medical equipment and supplies related to the terminal illness can be brought into the home. Social workers and chaplains can provide emotional, psychosocial, and spiritual support. Hospice also provides access to support around the clock when needs or concerns arise.

Think about what each one of those services means for the caregiver.

One less trip. One less thing to figure out. One more person watching the patient. One more person teaching. One more person asking, "How are YOU doing?"

And perhaps one of the most overlooked gifts hospice brings into a home is simply people. People who understand what is happening. People who aren't afraid to talk about it. People who listen. People who can reassure a caregiver that what they're experiencing is normal. People who walk through the front door and, for a little while, help carry the load.

What Can Happen When Families Wait Too Long for Hospice?

This is the difficult part of the conversation.

Waiting doesn't stop an illness from progressing. And avoiding a decision about end-of-life care doesn't necessarily mean that no decision will be made. Sometimes the crisis makes the decision for us.

I learned this painfully in my own family. My sister lived with significant medical needs throughout her life. Toward the end of her life, there were signs that her condition was changing and that she needed more support.

I saw them.

But when she moved into a group living situation, support services that had been helping monitor her health were discontinued. That meant there was no longer a skilled nurse regularly assessing her condition and recognizing changes.

And then came the crisis.

Without an end-of-life plan already in place, decisions had to be made quickly. My sister was placed on a ventilator. Our family lost the opportunity for the peaceful death at home that might have been possible had those conversations and decisions happened earlier.

That experience changed me. It reinforced something I have seen throughout my career: Not making a decision is still a decision.

Families sometimes avoid talking about hospice because they are afraid that having the conversation will somehow make death happen sooner. It won't. But having the conversation earlier may give the patient and family more choices about what they want the final chapter of life to look like.

When Should a Caregiver Ask About Hospice?

You don't have to wait until you are certain someone is dying. And you don't need to understand every Medicare hospice rule before asking a question.

It may be time to have a hospice conversation when you notice:

• Increasing weakness or sleeping

• Decreasing appetite or weight loss

• Frequent hospitalizations or emergency room visits

• Increasing need for help with bathing, dressing, toileting, transferring, or other daily activities

• Increasing pain or other difficult symptoms

• Progressive decline despite treatment

• The patient no longer wanting aggressive treatment or repeated hospitalizations

• Increasing confusion

• A caregiver becoming physically or emotionally exhausted

• The caregiver's own health beginning to suffer

• Increasing difficulty safely caring for the person at home

None of those things alone automatically means someone qualifies for hospice. But they are good reasons to start asking questions. And asking a question does not enroll someone in hospice. It simply opens the door to information.

Asking for Help Is Not Giving Up

I wish caregivers understood that asking for help is not a sign of weakness. It doesn't mean you don't love the person you're caring for. It doesn't mean you broke your promise. And it certainly doesn't mean you failed.

Sometimes asking for help is the humble recognition that you need support in order to continue carrying the heavy burden of caregiving.

My mother takes my dad to dance class because she loves him. She wants him to be happy. I love that about her.

What I don't want is the cost of caring for my dad to jeopardize my mother's own health.

Those two things can be true at the same time.

You can love someone fiercely and be exhausted. You can want more time and recognize that someone's health is declining. You can hope for tomorrow and prepare for what may be coming. You can be an incredible caregiver and still need help.

At Aspire Hospice, one of the things we want families to understand is that hospice isn't about taking over. It's about joining the family. It's about bringing nurses, aides, social workers, chaplains, medications, equipment, supplies, education, emotional support, and an entire care team alongside the people who have already been doing the hardest work.

Because the goal isn't to replace the caregiver. The goal is to help the caregiver keep being the husband, wife, daughter, son, sister, brother, or friend they were before caregiving consumed everything else.

There is no prize for carrying all of this alone.

Sometimes the strongest thing a caregiver can say is, "I need some help."

And sometimes those four words are what allow them to keep caring for the person they love.