Caring for an elderly, ailing relative can be more than exhausting.
It can lead to depression in the caregiver. And that can mean a reduced quality of care for the relative.
Add the unexpected – such as the caregiver getting sick – and the struggle to cope can seem mountainous.
A recent Associated Press-NORC Center for Public Affairs Research survey found that nearly half of adult caregivers say it's moderately or very difficult to balance work and caregiving. More than three-quarters of the respondents found it to be "stressful," and more than half found it to be "overwhelming." Still, more than nine in 10 called the caregiving experience worthwhile.
For perspective, we spoke recently with Donna Raziano, chief medical officer of Mercy LIFE. She and her colleagues work with seniors and their caregivers through Mercy LIFE's Program of All-Inclusive Care for the Elderly.
Who are today’s caregivers and what do they face?
In America, it is frequently the female who's taking care of an older adult, usually Mom. Women live longer than men. Right now, at least 20 percent of adult children are taking care of an older parent. It's pretty impressive.
The last phase of life is generally 4.5 to 5 years. The caregiver burden does progress. In the beginning you might be okay, and then you might realize mom is starting to fail, or you're starting to fail. That's a critical scenario. They're taking care of mom, so maybe they stop exercising. So their knee starts to give out. Or, let's say they get injured.
Depression in the caregiver is very significant. It can be from 20 to 40 percent of all caregivers. As the burden of caring for their loved one increases, the depression generally gets worse. That's a huge risk. If you do not take care of your depression, the quality of your care goes down, too. I would call that a critical doctor's appointment. You might need medication. You have to realize this is a very common scenario. You don't have time for everything, but you should make time for your mood.
Self-care is so important. The two things you don't generally hear about in that regard are physical health – make sure you keep walking or exercising – and spiritual health. We know that having some outlet in something spiritual has benefits. You'll hear about yoga and medication. Experts don't mention church services much. But just something religious or spiritual can be helpful in giving you the strength to move forward.
As a caregiver, how would you know if you’re approaching burn-out?
The early signs are starting to feel more irritable, more strained. You might start to feel angry. You might start to worry about money more because you can't work. You're starting to feel uncertain. Those feelings shouldn't be dismissed and kept private. There's a point where you need to be communicating them to family.
There's also something called the Zarit Burden Interview. It's a survey with about 30 questions, but a few key ones have been helpful for focusing on how the caregiver feels internally. They include:
Do you feel that as a result of the time you spend with your relative, you don't have enough time for yourself?
Do you feel stressed between caring for your relative and trying to meet other responsibilities, such as work and family?
Do you feel strained when you are around your relative?
Do you feel uncertain about what to do with your relative?
Uncertainty is often a trigger. As you get sick and Mom gets sick and you have financial difficulties and you don't know what to do, that really hits a critical spot where you don't know what's going to happen. The perception of that burden is intensified when you're uncertain.
If you don't recognize that those triggers can happen and don't start preparing, you might become very burdened and very angry and very resentful. Extreme burnout is very dangerous. I've seen physical abuse, financial abuse. People snap. You can be so frustrated at a loved one who is repeating themselves, who is falling. One thing that often causes burnout is fecal incontinence. That is an extreme trigger where people just lose it.
If you find that you are suffering burnout, what’s next?
If almost every day you're feeling you don't have privacy, you can't manage any more, etc., you may need time off to recover and re-engage. Respite is what they call it. Often, a weekend is not going to do it. A week is great. You've got to take a break.
There are two ways. Mom can go into a facility for a week. Or another family member can fill in for a week. It has been shown over and over again that respite care, one to two times a year, will improve the resiliency of the caregiver, the ability to give good care, day in and day out.
It's also okay to supplement your services with formal services. If you don't have the money, you might have to work through your church or the Philadelphia Corporation on Aging or your county's aging office, or consider a LIFE program, which has day services. That's where you say, "I still want to do this, but I have to figure out a way to supplement before I completely burn out." Another example is Time Out, a respite program at Temple University where a student sits with Mom for an afternoon.
You also mentioned advance care planning. What is it and why is it important?
This is about the long term. With medications these days, people live longer. You have to be thinking about resiliency and multi-year endurance.
With advance care planning, you consider what you are going to do if something happens. What are the emergency scenarios? How do we want to deal with the future when I get sick or Mom gets sick? What if she gets to a point where she can't do steps? Can you put the hospital bed in the living room? What if Mom has a stroke? How are we going to keep Mom comfortable?
Emergencies happen in health care. If you have not done any advance care planning and you get in a car accident or have a heart attack, the stress is through the roof. But if you know that Plan B is Sister X, the situation will feel like less of a crisis.
Ideally, the entire family should be involved in making the plans. I have tried many times to get family members B and C and D to agree to do certain days or nights of the week. We need to spread this out a little bit. That sort of works, but it's not great. Often, the reality is that Daughter A does it all and the others informally come in.
But just having an open discussion about what Mom's needs are and how we're going to deal with her as the next decline happens takes away some of the uncertainty for the caregiver. Just hearing the brother say, "it's okay, you can call me," will give that caregiver resiliency.
With all the burdens, why do nine in 10 caregivers say it’s worthwhile?
It can be very satisfying, but it's also the hardest job in the world. The majority of people want to do it themselves because they know Mom the best. They know what Mom likes. They know how she likes her hair done. They know what food she likes. They want to take care of Mom.
The caregiver has social purpose. And if you have social purpose in life, generally you are less depressed. Even as Mom is declining, you can re-engage, re-connect in a very private, tender moment.