Lighting the Candle at Both Ends
A Firsthand Account of Family Caregiving Burnout
There comes a time in some peoples’ lives where the roles may switch between parent and child. According to the American Academy of Geriatric Psychiatrists, “1 out of every 4 Americans cares for someone 50 or older.” I am one of the 25 percent.
My mother was diagnosed with early-onset dementia before she turned 60 years old; but between you and me, I think she had it long before she was diagnosed. I always thought my late 30s and 40s would involve me living life to the fullest and traveling – doing things I had never done before. The universe had another plan for me.
My mother was able to stay by herself up until about a year ago. Four years into her diagnosis, she and I decided the best thing to do for both of us would be to move in together. Even though I’ve occasionally struggled with this decision because of a lack of alone time, I’m so glad we did. She has progressed more in this last year than she had in the first four combined. I have been my mother’s full-time caregiver for a little more than a year now. It has its challenges to say the least. Up until recently, I haven’t really ever seen myself as a “caregiver.” I normally just say I’m repaying my mom for taking care of me for 18 years. But, I am a caregiver. If you are helping a loved one with medical needs, monitoring their meds, keeping the house clean, preparing meals, even taking care of groceries or errands – brace yourself – because you are a caregiver, too! Once you come to this realization, the next step is to take care of yourself, too. If you don’t see yourself as a caregiver, you are more than likely not taking care of YOU because you feel like you HAVE to care for them instead of thinking of it as a second job.
Have you ever struggled with finding the energy to go to work? Ever just feel like you need a break because you’re so worn out? Just like with any other job in this world, you can experience burnout when caring for a loved one. If you have a full-time job already (like me), you leave for the day only to come home to your second full-time job of caregiving. There is never a break from those responsibilities! You are the one helping with their medications, laundry, cooking, answering endless questions, providing entertainment, taking them places, etc. They require your full attention daily, just like a child.
Let me ask you a question … are you suffering from burnout? Here are some telltale signs:
Anxiety, depression, irritability
Feeling tired and run down
Overreacting to minor nuisances
New or worsening health problems
Feeling increasingly resentful
Drinking, smoking or eating more
Cutting back on leisure activities
You have much less energy than you once had
It seems like you catch every cold or flu that’s going around
You’re constantly exhausted, even after sleeping or taking a break
You neglect your own needs, either because you’re too busy or you don’t care anymore
Your life revolves around caregiving, but it gives you little satisfaction
You have trouble relaxing, even when help is available
You’re increasingly impatient and irritable with the person you’re caring for
You feel helpless and hopeless
If you answered yes to any of these, you could be burned out from caregiving. How many of these signs have you experienced in the last month? Burnout is different for everyone. For me, I feel like I experience all of the above daily! And I feel guilty for feeling that way. The truth of the matter is, we as caregivers will not be any good to our loved one if we are exhausted. If we can’t take care of our own needs, we may not be around much longer to help them.
A study done at Ohio State University states that “children caring for their elderly parents and parents caring for their disabled children live four-eight years less than those not in a caregiver role.” Another study from Stanford Medicine states that “40 percent of individuals caring for someone with Alzheimer’s or dementia die before the patient.” This isn’t due to anything other than the sheer physical, spiritual and emotional toll of caring for someone with Alzheimer’s or dementia!
As caregivers, we must take care of ourselves. It’s a lesson I am failing at miserably. This will not be a “do as I say not as I do” kind of thing. I plan on taking my own advice … starting today. Thankfully, there are agencies that provide non-medical home care; programs that can give us a little break (often referred to as respite) occasionally for those of us who may not be able to afford the costs of hiring a caregiver; and/or family or friends living close by who may be able to help as well.
To prevent the symptoms mentioned before, respite is a way to do that. It can be something as small as someone coming over and letting you take a nap or as big as someone staying with your loved one so you can go out of town. In my situation, I am an only child. I don’t have much help outside of the community resources that are out there. But if you have siblings, church family, or extended family that are willing to help, let them. They can’t read your mind! You will have to ask for help sometimes even if you are reluctant or consider it a burden.
If you are at your wit’s end, take a break from your loved one. You may feel guilty (something I struggle with daily) or even heartbroken, but I promise you once you are out of their sight, you will be okay – just like when you were starting school and you cried for your mom or dad! Once your attention was directed at something else, you were fine … and they will be, too. If it helps, think of it this way – if you are sick of them, I promise they are sick of you, too! They need time away from you just as much as you need time away from them. They could benefit from someone new to tell those same five stories to that you hear every single day. It will do their heart good (and yours as well) to have someone fresh to laugh and play games with – respite benefits you AND them.
Another piece of advice that has worked for me is to not tell them they are getting a caregiver. Introducing someone as a “caregiver” makes them think they need a babysitter and takes away their independence. Instead, introduce them as a friend of the family that wanted to stop by and visit for a bit. This will help them feel like they still have independence and are making a new friend.
If you receive respite from an agency like ours – Favor Home Care – you may feel like you can’t leave the caregiver there by themselves with your loved one until you feel comfortable. This is normal. Maybe the first one or two times the caregiver is there, just go take that nap you have been wanting. That way if anything does happen you are there. Slowly make your way out and about. Trust can take time.
There are also resources out there that may help pay for these services. Alzheimer’s Arkansas has grants available specifically for this. For more information, visit https://www.alzark.org/ or give Favor Home Care a call at 501-725-2273 and let us help.
Even if you just need someone to talk to, Favor Home Care will listen and do all we can to ease the family caregiver burnout. As a Care Manager, you may ask for me directly … because I’m working through this with my mom and understand what you’re going through. If we’re not able to help with services for your loved one, please consider us a resource and reach out anyway. We may be able to point you in the right direction to get you that break you need … and DESERVE!
Candice Lewis is a Care Manager for Favor Home Care. She lives with her mom, Trish, who is battling early-onset dementia. She has a passion for helping others who are on the same journey as she and her mom. She finds comfort in the presence of animals and has a pig, three cats and a rabbit.