Caregiver Burnout Is Real
Taking care of another person is hard work no matter how you slice it. It doesn’t matter if it is a paid position or not; if you are related to the person you are caring for or not. It doesn’t matter if the person you are caring for is kind and loving or cranky and irritable. It’s all difficult. It can lead to burnout if you aren't careful.
Caring for a frail or struggling elderly person is a lot like parenting, and possibly a little harder. The nitty gritty tasks are quite similar: logistical tasks like shuttling to appointments, orchestrating health care needs, paying bills and so on. Feeding, toileting, bathing are similar. Though kids (and their poops) are smaller, adults have some muscle memory and can help you hold a towel and sit patiently while you shave them or do their hair.
I think the big difference is the philosophy or mindset that drives the caregiving. Parenting is like spring gardening. You are metaphorically planting seeds all over the place and you are so hopeful for all the growth. Possibility is everywhere and optimism abounds. With elderly caregiving, not so much. It’s more like a fall cleanup- hard work and things are looking a little scraggly. There are some bright spots, sure but most of the hope and optimism is gone. Oh and when it’s over, you will have lost a senior.
What is Caregiver Burnout?
We talk about burnout a lot but what actually is it? Burnout is the state of emotional exhaustion that comes from being worn out and feeling empty from the constant demands on one’s time, energy and resources. It happens over time and it’s hard to recognize it until it feels like you are drowning.
Almost 42 million Americans provide unpaid care to an adult over age 50
40% to 70% of caregivers report signs of depression
23% of family caregivers report that caregiving has negatively impacted their physical health
40% of family caregivers of people with dementia suffer from depression compared to 5-17% of non-caregivers of similar ages
Caregivers whose care recipient has an emotional health problem are more likely than others to report a decline in their own health (24% vs 14%)
In short, caregiver burnout is a real thing that has real consequences.
What Causes Burnout? Let us count the ways:
Emotional demands of your senior's condition. It’s hard when you have no control over what is happening to someone you love. Sometimes you just can’t make someone well again. Dementia progresses. Parkinson’s progresses. When someone starts to slow down mentally or physically it feels like it just keeps going. It’s also hard when your senior has an unending need for attention or reassurance. For some seniors, you just can’t talk with them long enough. Too much feels like never enough to some people.
Conflicting Demands. Family caregivers are often caring for more than one person (like their children and their parents). And those people’s needs are often in conflict. Kids and teens might be bored by what grandma needs to have done and grandma might be overstimulated and overwhelmed by what the grandkids need. Oh and then there is work to consider. Deadlines don’t care much about sundowning.
Role Ambiguity. This is a really tough one, in my opinion. Some days you are the daughter or son to your senior. Some days you have to be the parent or decision maker for your senior. This can change moment to moment. My mom used to ask me for advice and when she didn’t like my opinion she would switch and admonish me like I was a young child. Some families are spread across the country and the local caregiver is in charge and then maybe someone comes into town and disrupts the system. It’s a lot.
Financial Strain. Aging is expensive and people run out of money or didn’t have much to begin with. Need I say more?
Lack of Privacy. Many caregivers feel like they are never alone. There is never a moment’s peace. People are coming in and out of the house or the long term care facility. They have kids and bosses and partners. Wherever you are, someone who is somewhere else needs something from you. Oh and kinda soon, if possible.
Lack of Know How. Caregivers are thrust into roles they don’t know how to navigate. They have to be nurses, insurance agents, accountants, podiatrists, pharmacists and IT support. Often in the same day. Talk about imposter syndrome.
How Can You Tell If you are Burnt Out
Here are some of the ways burn out manifests:
Exhaustion. Emotional or physical. You don’t want to do much outside of your obligations. It’s hard to motivate. Scrolling on your phone, watching mindless TV or other zoning out activities happen during this time.
Headaches/Body aches/ Stomach Aches. Your body will send you signals that will prompt action. In my professional experience, people are very good at ignoring their mental needs and they are quicker to seek help for a physical ailments.
Sleep problems. It can be hard to fall asleep when your mind is reeling from all that has to get done or didn’t get done or because you are replaying a difficult conversation in your head. Alternatively you might collapse from the aforementioned exhaustion only to be woken up in the wee hours by something you forgot or something you are worried about. Stress is often nocturnal. When your body finally is allowed to stop for awhile your mind is more than ready to pick up where your body left off.
Irritability. There is a lot to do and caregivers excel at figuring out how to get things done. Their minds are often juggling several items at once in a chaotic and perfectly timed symphony. It’s hard to sustain this for long and the convergence of all these factors makes for a short fuse.
A need for control. Because there is so much for caregivers to keep track of it feels like there is little margin for error. At least that’s the perception. When you work so hard and plan so much to keep all the balls in the air it can feel like anything that upsets the balance will throw the whole system into flux. When so much is out of your control like health conditions and doctor appointment availability and finances, it can feel reassuring to take control. It’s important to remember though, that feeling like you are in control doesn’t always mean you actually are.
Pro tip: ask someone close to you if you seem overwhelmed or burnt out. Most people notice changes in others before they can see changes in themselves. Our own coping skills are often habits and ones that we don’t even realize. Because of the signs mentioned above, loved ones of caregivers often feel like they are walking on eggshells. They know their loved one is stressed and they also fear upsetting the balance. Remember that your symptoms are often visible to others.
What Can You Do About It?
So far this has been pretty depressing, I know. It seems like all bad news. However, knowing you are likely to experience something can help you prevent it and recognize signs in the first place.
Take Stock of Your Personal Strengths and Shortcomings. Some people are good planners, some are good at executing a plan. Some people are better at phone calls and handling money. Some people do ok on little sleep; others not so much. This is not a time for judgment but an honest assessment of your strengths. Play to your strengths and ask for help in your areas of weakness.
Schedule periodic check-ins with yourself and your support person. Ask yourself: how do I feel? Try to name a feeling other than fine, stressed, tired. Notice if you are having any physical problems. Take stock of your sleep and your coping skills. Are you drinking or using marijuana more than usual? Ask your support system if you seem ok. Be willing to hear something you won't like.
Plan for Respite Care. Respite Care is a service that allows caregivers to take a break while their loved one is in a facility. It is only covered by Medicare if your senior is in hospice. There are facilities that offer this for seniors and you can also hire people to come into your senior’s home to do this. You don't have to have formal respite care but a prolonged break is important if you can make it happen.
Ask for Help. Caregiving is a big job. Remember when I mentioned shortcomings above? Ask people for help in areas you are not so great at, even if it is short term. If you are struggling with your senior’s constant need to talk, ask a friend to come along and help you talk with your senior. Helpers tend to do well with specifics. Help looks different for everyone and most people are happy to help if you give them a specific request.
Realize there is more than one way to do something. This goes along with asking for help. Someone covering your tasks won’t likely perform them the way you would and that’s ok. Remember you are getting help and you will probably want them to help you again in the future. Remember you are getting a break. Deep breaths and let it go…
Don’t Let Perfect be the enemy of good. Sometimes when we are nervous and wanting to be in control we really have an idea of what something is supposed to look like or how something is supposed to turn out. Abandon that notion when you are working with someone trying to help or with navigating healthcare systems, etc. Sometimes good enough really is good enough.
Let something go. On purpose. When you are figuring out all that you have to get done I think many people have an aspirational list. I know I do. I don’t just write down what I think I can get done. I write down what I think I can get done if I am a well rested robot with 12 uninterrupted hours ahead of me, tons of energy and know-how. Take something less important off your list. Your sanity will thank you.
When you are caring for a senior who is frail or in poor health it can feel like you are alone. Sometimes emotional support is the most important. I was a late in life baby for my parents and so my parents were much older than most of my friends’ parents. I went through their aging process earlier than my peers and now my parents are gone while my friends are going through it. People who have been through this or are going through it are very supportive. They really know how hard it is. Find a support group in your community or online. Talk with a friend. There are no awards for not breaking down and you need to do that sometimes. I know I did and I am so grateful to the people who helped me through it. Let us know in the comments what you struggled with or tips you have for other people going through this challenging time.
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