Caregiver Burnout - A Personal Hell

Where I am has been extremely difficult. The misery has been seven years in the making. I am slowly fighting to crawl my way back out of another pit in hell. What is happening in my life is known as "CAREGIVER BURNOUT" –a very real thing and it is also a very dark, isolated and lonely place to traverse through.

"Caregiver Burnout" is absolute mental/physical/spiritual/exhaustion, isolation, loneliness, frustration, irritability, anger, resentment, despair, depression, inability to concentrate, brain fog, memory loss and the list goes on.

You are completely on empty. Yet, you can’t just walk away or tend to your own struggle because you still have to care for someone else’s wellbeing 24/7 who is dependent on you.

Moreover, when you tend to be the one everyone else looks to for support, encouragement, wisdom, strength, fun and to get lifted back up – it is difficult to ask for support. Even worse is, when you finally reach out to those who you lift up and they don’t seem to know how to reciprocate. Or, perhaps they just don’t actually care.

People get used to you always being there FOR THEM. You being the light FOR THEM. You LIFTING THEM up. You listening to their concerns and caring about THEIR NEEDS. People get so used to it, they don’t even think about the importance of giving it back or that you could use the same.

STRENGTH vs INVINCIBILITY

I have dealt with, overcome and risen up from things in this life that would have completely broken or killed most people. Yes, I am strong and will find a way through this – but please don’t abandon me when I am sinking! That just adds more to the pain, sadness and isolation which is already unbearable.

Strength doesn’t mean I don’t ever need love, kindness, compassion, understanding and support from others. Strength does NOT negate feelings, emotions, heartache, pain or suffering. It just means you will crawl, walk, kick, fight for and do whatever is necessary to deal with what comes at you in order to survive it!

Strong, but not invincible! A person only has the physical and mental strength for so long to tread water, keep their head above it and not drown. There comes a point you are so expended and burnt out mentally/physically/spiritually that you start to go under and sink.

I fight to stay afloat. I fight with everything I got for a second wind. I fight for my happiness. I fight to keep my light going for others. I fight to lift others up even when I am drowning. When I go down, I fight to get my head back up above the water, breathe and stay alive.

I am worn out. I am on empty. After seven years of being a sole caregiver 24/7, my strength is wanning and I sink more often. It is not that any one thing is particularly difficult. It is seven years of a daily grind with little to no support. It starts to chip away at you a tiny piece at a time. Often, you don’t even realize what’s happening – then, one day you are just in this devasting, dark place on empty and all alone.

CAREGIVERS ALSO NEED COMPASSION & CARE

Caring for a loved one with dementia / Alzheimer’s requires an enormous amount of patience, compassion, understanding and flexibility. Having to do it on the daily is no joke. Having to do it all alone (I have no spouse, no children, no living siblings to help me) is even less funny.

People’s lack of understanding and compassion for what I am dealing with on the daily adds to the joy of it all. As much as, we as caregivers, give away of ourselves in compassion and care to our loved one, we also need those around us (friends and family) to help fill us back up.

Understand, it takes a lot for me to show my vulnerability when I hit a bottom. Then, to have people make indifferent comments or blow me off - that sends me into a further downward spiral. For example, in the last few months I have reached out and told people I am struggling, angry, frustrated, hurting, emotionally drained or whatever and I received the following terrible responses.

SideBar: I am not sharing these “responses” with the intent to make anyone feel like crap for saying them. On the contrary, I want to use the experience as a teaching moment to help others. To help those who are struggling know they are not alone. And, to help others understand how to be a truly good friend to someone who is struggling.

TOP FIVE WORST RESPONSES I’VE PERSONALLY RECEIVED WHEN I SHARED I WAS UPSET & HURTING:

#1 “One day your mom will be gone and you will miss her.”

My Internal Unspoken Thoughts:

Duh, do you not think I don’t already know this. Seriously!? Thank you for completely disregarding and dismissing my feelings/struggle while adding more guilt onto the pile for me to carry.

#2 “Yeah, I have had bad days too. Did you hear what Biden said about blah, blah, blah.”

My Internal Unspoken Thoughts:

Thanks for the acknowledgement of my suffering [sarcasm]. Of course, ridiculous rants about politics are far more important than people or my pain. Sure, let’s talk about that instead. Sigh . . .

#3 “Why don’t you just put her in a nursing home.”

My Internal Unspoken Thoughts:

I never thought of that. What a brilliant idea. Really!? Have you bothered to ask why I have not done so?! The answer would be, nope . . .

#4 “What doesn’t kill you, makes you stronger.”

My Internal Unspoken Thoughts:

The next time I bare the pain of my soul and a person throws out a platitude and treats my feelings with such indifference - they really need to run! How about if I beat you down just shy of death and barely able to breath and then, say "Don't you feel stronger now!?"

#5 “You should take a vacation?”

Wow, I never thought of that! Yep, it’s just that simple. I’ll take a much-needed vacation. Seriously!? You think the reason I haven't taken a vacation in seven years is because I haven't thought about or planned one? There are 100 details, responsibilities, circumstances and financial aspects that have to be considered and are not easy to navigate. By the time you deal with all of that - it just isn't feasible.

WHY ARE THESE RESPONSES SOME OF THE WORST THINGS YOU CAN SAY?

First of all, NOT one of them even acknowledges or validates the person’s struggle or feelings. You have basically dismissed their pain and stated what the person is feeling or struggling with does NOT matter. Or, that they are a bad person/failure for not always feeling joy and honor in their mission as a caregiver.

The above responses do NOT acknowledge any sense of compassion or empathy for the person's struggle or how hard they are trying to keep it all together. Worse, it heaps guilt onto the caregiver of which they are already struggling with – feeling guilty for not being able to do it all and keep up with everything.

Secondly, the caregiver is pouring out ALL they have emotionally/physically/spiritually to care for their loved one and not receiving any emotional support in return. The caregiver’s cup is empty and those responses say “So what. Why don’t you just fill the cup up.”

I liken it to Marie-Antoinette’s obliviousness and disregard when she was told people were starving and had no bread. Her response “Why don’t they just eat cake.” WTF!

SO, WHAT SHOULD YOU SAY OR DO? HERE ARE SIX THINGS YOU SHOULD. #1 First, understand if a friend is sharing their hurt with you, they are being vulnerable and trusting you with something deeply personal. That’s not easy. Respect and honor that vulnerability.

#2 Actually listen. What they are sharing with you is deeply personally and important! Don’t just change the subject, start sharing a story about your day, your job, your politics or whatever. And, please, don't start flipping through your phone responding to texts, posts or so on while the person is pouring their heart out to you.

#3 Even if you have never been in that situation – try to imagine how difficult it is! Exude some compassion and empathy for what the caregiver must be experiencing even if you never have.

#4 Unless you have been in the same situation or have professional expertise in the area, don’t just dole out flippant advice on something you know little to nothing about. Instead, ask questions and listen to the responses to gain greater clarity, before making suggestions.

#5 Invite the caregiver to get out and do things with you to give them a break. And, understand they need some advance notice. Caregivers can’t just go and do whatever they want, whenever they want. A caregiver’s life is not their own. Sometimes we can do a spur of the moment, but more often, we have to organize, plan and make accommodations for our absence. #6 This is the easiest one. Ask the person "What can I do to help you?" Or, "What do you need from me that will help lift your spirits." Don't be surprised if there is prolonged silence and/or a response of "I don't know." Caregivers are so focused on and used to it being all about the other person - they often don't even know anymore what it is they need.

NUMBER 5 ON THE "DO LIST" IS A BIG ONE FOR ME!

The isolation and loneliness as a sole caregiver and someone who is also single, is one of the hardest on me. I don't have that support person/partner in my life I can just put my head on their shoulder after a long day, get a hug of support and love or just have a conversation with.

You have no idea how even two hours away from the house and sharing conversation with someone about anything can make a difference and help fill my cup back up. It's a much-needed break from the grind, a refreshing change of scenery.

So, please, invite me out. Include me in things. And, understand, if I ask you to join me in doing something, it is more than just something to do – it is my lifeline and sanity. I am not writing this just to vent. The intent is to use my personal struggle as a teaching moment and give purpose to my pain. Hoping that something I shared here opens people’s eyes and more importantly their hearts.

As I first started writing this, tears began streaming down my face. The last seven years

have been a very challenging and lonely road. One that most cannot even imagine nor could endure.

I confess, most days I make all of this seem easy from the outside looking in. That's what I do. I don’t give myself the option of giving up! I just deal with it alone and don't endlessly complain to others, talk or vent about the struggle. I want to bring the light to others, not be a "Debbie Downer" and a drain on others. So, if I ever do tell you I am really struggling, upset, angry, hurt, having a bad day, etc . . . It's because I am running out of strength. I am on the verge of falling or have fell into a deep pit, a dark place and I am drowning. PLEASE LISTEN and HEAR ME.

There is only one thing worse than suffering in silence. It is allowing yourself to be vulnerable and having the courage to reach out to others - only to have others dismiss or abandon you. That hurts far beyond any words I can even find to explain it . . .

A PARTING WORD OF THANKS & REMINDER

Last, but not least. Thank you! To those who have stepped up, who genuinely care and have supported me in this journey. You have no idea how much your words and acts of kindness matter. No matter how great or how small. A reminder. When your lives get busy, please don’t forget about me and the important difference you make in mine. Sending a “How are you?” text, a phone call, an invite. Often, it's the little things we do that can make such a huge difference in someone else's life. If you know a caregiver, please reach out to them. Even if they are NOT voicing it or asking for your love, kindness and support - trust me, they still need it.