Caregiver Fatigue and Self-Care

Caregiver fatigue and self-care are often overlooked.  As a caregiver, you may be so focused on your loved one that you forget about your own self-care.  I’ve touched on this topic in another blog, but today I want to dive in and get into some of the nitty-gritty details.  Let’s talk about how to recognize when you may be reaching the end of your rope, and what to do about it.
 
While I was waiting for my transplant, I spent more than half of my time in the hospital.  This meant that my mom made many trips back and forth to the hospital (20 miles each way).
 
Every day I was in the hospital (sans two), she was there to help advocate and stay up to date with my changing needs.  She was also helping with the needs of my grandparents who were in assisted living up the street from her house.
 
From my perspective, she was a superwoman and managed everything with great finesse.  But, I’m sure if you asked her, she’d say she did her best but it was not perfect.
 
Caregiver Fatigue and Self-Care Dirty Job

Being a Caregiver Is the Hardest Job Ever!

There are tough and sometimes dirty jobs out there!  Just ask Mike Rowe.   But when it comes to caregiving, I’d contend it’s one of the hardest.
 
It can be thankless.  Sorry about that, caregivers.  It’s not that we mean it.  We are caught up in our own world and forget to say thank you.  Or we’re completely out of it and can’t even remember our names, let alone how to be grateful.
 
It can be downright disgusting.  Nausea, vomiting, incontinence, drains.  Need I say more?
 
It can be terrifying.  Brushes with death, HE-induced belligerence, and the general “my loved one needs a transplant” anxiety.
 
It can be stressful. Managing multiple appointments, dietary restrictions, updating friends and family, prescription tracking.
 
With all that rests on your shoulders, it’s no surprise that so many caregivers experience fatigue.
 
Caregiver Fatigue

Recognizing Caregiver Fatigue

I admit, I was self-absorbed at the time, but even still I could see when my mom was feeling the fatigue setting in.  She was great at forcing herself to disconnect, but it can still catch you off guard.
 
So how do you (or someone else) recognize when you might need to take some time for self-care?  Here are a few signs of fatigue to look for:
  • Insomnia
  • Sleeping too much
  • Feeling overwhelmed
  • Having trouble engaging in activities
  • Mood swings
  • Tension
  • Headaches
  • Loss of appetite or overeating
  • Overwhelming sadness
  • Inability to disconnect

 

Everyone is going to handle stressful situations in different ways.  This means signs of fatigue may not always be glaring, so look for more subtle signs too.  I’m sure you can feel when stress is taking hold.
 
Alright, so you recognize your fatigue, now what do you do about it?
 

Caregiver Self-Care

Self-care for caregiver fatigue isn’t only about a hot bath and a cup of tea (although, those are nice too).  It goes deeper than that.  Often, the transplant journey can be a very long process.  We could be talking years here.  You won’t always be in full-on caregiver mode for that whole process.  But at the end of the day, transplant patients have to be sick enough to receive a transplant.  So, the chances are good you’ll be donning your caregiver superhero cape at some point.
 
So what are some other things that you can do for self-care?
 
Caregiver Self-Care Support

Seek Out Support Groups

There are a ton of support groups out there for caregivers.  It doesn’t even need to be one that’s focused on caregivers for transplant patients.  You can search for resources by state here.
There are also many private groups on Facebook, some of which are transplant specific.  You can also ask the transplant center team.  They may know of some in your area.
 

Ask for and Accept Help

Put together a list of things others could do to help.  People often say, “let me know if there’s anything I can do to help.”  Now is your chance to take people up on their offers.
  • Meals that go from freezer to oven or slow-cooker
  • Someone to come take your loved one for a short walk
  • Grocery pick up
  • Errand running, like prescription pick-ups
  • Non-perishable snack packs to keep you fueled at the hospital
  • Someone to sit with your loved one so you can take a break

 

Understand Your Limits

Part of caregiving is understanding what you can and cannot do.  If something is outside of your level of comfort, ask for help from professionals.  Don’t feel comfortable inserting an IV into a PICC line at home?  Ask if there is a service covered by insurance to do this for you or training to ease your discomfort.
 

Focus on the Positives

Don’t be too hard on yourself.  Most people who are family caregivers have no experience in what to do.  Nobody expects perfection and you are doing the best you can.
 
Caregiver Fatigue and Self-Care Resources

Use Your Resources

Transplant patients have several resources available to them at the hospital.  But guess what?  Many of those resources are available to you too.  Transplant centers understand that the patient may not be (and often are not) the person they talk to most.  Nurses, doctors, and social workers are all accustomed to working with caregivers.  They are an excellent resource when you have questions.
 

Plain ‘Ol Self-Care

Sometimes, it is about the simple stuff.  The usual things for caregiver fatigue and self-care apply in this case.  Here are some ideas to get you in that mindset:
  • Meditation
  • Deep breathing exercises
  • Yoga
  • Tai-Chi
  • Therapy
  • Massage
  • Journaling
  • Hot bath
  • Dinner with friends
  • Mani/Pedi
  • Facial
  • Crafting
  • Putting together a puzzle
  • A walk or run
  • Stretching
  • A good cry
  • Scream into a pillow (it sounds silly, but it’s more cathartic than you might think)
  • A healthy balanced meal
  • A good night’s sleep
  • Quiet meal with your spouse or other family members (no transplant talk!)
  • A scenic drive
  • Read a book
  • Listen to a podcast

 

Caregiver Self-Care Hand Massage

Caregiver Fatigue and Self-Care Are Manageable

Understand that despite how overwhelming everything can seem, it’s all manageable.   No caregiver is going to make it through the transplant process without experiencing some degree of fatigue.
Self-care often requires that you make a concerted effort.  When your to-do list is long or you feel overwhelmed, self-care is the last thing on your mind.  I mean, how in the world can you pull back from all that needs to happen for a run or mani/pedi?  What if you miss something?  What if your loved one needs you?
 
The likelihood is that your loved one will be just fine for an hour or two.  Particularly if they are in the hospital.  Besides, you can always ask someone to sit with them for a little while.  See above.
 
The transplant journey is a marathon, not a sprint.  And not only for the patient.  This counts for you too.  If you run at a sprint pace for days, months, or even years, you’ll never make it to the finish line.  Pace yourself.  Being a caregiver requires strength and fortitude.  You can’t be either of those things if you are too exhausted.
 
You are going to need the strongest version of yourself for this.  Give yourself the space to feel your feelings, rest, and recover.  Your loved one will appreciate it and you’ll make it through in much better shape.

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2 Responses

  1. You were right about the timeliness of this wonderful article. Your wisdom blows me away. Love ya.

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Hi, I'm Tiffany!

Liver Transplant Recipient

In 2013 I was diagnosed with End-Stage Liver Disease and  given 90 days to live.  A mom of two and healthy for most of my life, I now had a terminal disease and no clue where to begin.  I spent the next 132 days fighting for my life.

I am here to give you tips to help you through the transplant process and beyond.

Welcome to the transplant family!

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