learning to navigate the world, j-bear style

Supporters of Caretakers, Lend Me Thine Ear

So, when you’re in a situation where there is a special needs child or adult, there’s always the primary caretaker or caretakers. There’s that one or maybe two go-to people who coordinate all of the various care this person needs: the doctors, the therapists, the care plans, the IEPs/IFSPs, the schedules, the special diets, so on and so forth. They are the guardian of the calendar and the people possessed with the subject matter expertise required to give their precious person an amazing quality of life.

Then there’s the people who support both the primary caretaker(s) and the person being cared for. They’re the partner parent, the significant other, the friends, the relatives, the loved ones, the siblings… The family members, by blood or choice, who are there to step in whenever needed. It’s you who I write this to.

There is a unique level of stress that lays on the shoulders of the primary caregiver. The problem with expressing that is that it is our job as that primary caregiver to make it look easy. Frequently, we look like we have everything totally in control. We make a difficult situation look commonplace and simple when it is anything but. We become masters of juggling while balancing plates on sticks.

Sometimes, those plates come crashing down.

This is when we need support.

I know, I know, it’s hard for outsiders to see when those plates are about to fall. I am forever guilty of this. I am terrible at asking for help to begin with so I rarely show signs of crisis until the plates have all fallen and shattered. I know I am not alone in being that way. We all do it for different reasons I am sure but, such as it is, we need help to step in before the proverbial dung hits the proverbial fan.

What can you do? Listen. Please listen. Please respect the stress that comes with being “on” 24/7. It may not seem like we are, but when you have a loved one who wanders, or is medically complicated, or whose care requires repeated night wakings, or any combination of any of this you rarely to never get to truly have a break from it. You, as a human being yourself, begin to lose your identity amid giving the level of care to the person who needs and deserves it. You begin to forget who you are, what it is to relax… You begin to suffer from within, usually not noticing the suffering until it has gone so far that the pain is hard to heal. This is when resentment, depression, anger, sorrow… This is when the darkness eclipses the light and a healthy situation becomes toxic.

Family, friends, loved ones… When we ask for a break, please, respect that if we’re asking it is because we’re truly in need. This break doesn’t have to be huge. It can be as small as half an hour by ourselves to do something as simple as enjoy a leisurely shower or a couple of hours where all we need to worry about is reading a book or sitting staring blankly at the wall. When we call you crying because we think we are failing or are at the end of what we have to offer, hold us up. Encourage us. Remind us that we have got this and that you’ll see us through. Let us lean on you when we’re weak so we can rest enough to be strong again.

We, the primary caregivers, run on a crisis high most of our days. It is when life is calm that we need your support most. The hormones the body releases to run on crisis can and do cease once in a while and that is when we crash. We stand the risk of falling apart because the reality of what we’ve been going through kicks in. It’s then we actually face our panic and anxiety. Support us. Be there for us. Listen, love and care.

A lot of us, myself included, do not bring in paychecks. We do not contribute to the household in a way that is materially tangible. It is hard to quantify what it is we do for a living when, in fact, we do a lot. Respect that we are not sitting around the house all day, especially when you come in and find the house a mess and nothing appearing to have been done. I will tell you first hand that days like that it’s either because the day focused on other care or, if it’s been in the past 8 weeks, it’s because I’m sick too. We prioritize differently than you might expect to make what is best for our loved ones happen and it is damaging to have that insulted or diminished.

The point of my disorganized thinking is that caregivers need care too. Please don’t lose sight of the strain of our role as you wish us not to lose sight of the strains in your life. Make the support you offer true, loving and unconditional. That gift alone is priceless and makes the quality of life of the person we both love that much better. In the long run, it will reduce strain on all sides and thus make us all happier.

I feel that to be a great return on the emotional and time investment, don’t you?

4 Comments

  1. anne rossetti (mary's sister)

    “the hormones the body releases to run on crisis can and do cease once in a while and this is when we crash” – and, that crash can be deep, dark, and long lasting. People tend to come through with tremendous support during what is percieved as a “crisis”, an illness, death, family separation – then, they go back to their own lives believing the “crisis” has passed. For long-term care-givers like you the “crisis” never passes. Something as basic as sleep deprivation can cause a total breakdown (there’s a reason its used as a form of torture). Reading this post, my heart breaks for you. I know, although in different circumstances, something of what you are going through, and I wish I had some words to help other than afirming that you are absolutely 100% perceptive in what you say. I hope that you find those “long-distance” supporters in your life. love to you … Anne

    • mamabear

      This change in hormones is a major factor in why people get PTSD/complex PTSD. It’s amazing how the brain works, yet it’s why I will likely be “mentally ill” for the rest of my life. That’s okay though, I am surrounded by fellow nuts and happy with that. I’ve done this gig nearly my entire life – if it wasn’t one person, it was another – but I know a lot of others who have not. :'( It’ll never be easy but it will always be worth it.

  2. Mary Smith

    This has been an especially hard summer for you, J [and family] with your medical problems on top of everything in your day to day lives. I was thinking that now Jacob is in preschool, you would feel a bit of release from some of the pressure. It is hard for someone to even begin to grasp what physical and emotional stress that being a caretaker involves. Your message certainly is a wake up call to friends and family who do care. It is important that you take care of yourself and I am glad to see you reaching out.
    love, Mary

    • mamabear

      Hi Mary! I did edit your comment for privacy (because I’m a blabbermouth but not everyone necessarily is -okay- with me being a blabbermouth! 😉 ) but I left the bulk in tact. This after I thought it had been deleted like what happened before! Stupid technology.

      A dear friend was going through something similar and it reminded me to write this. I do get support, thanks to you and Anne and the family. I really do, and I am blessed and grateful for it. It’s been a Godsend these past weeks. I had a baptism by fire at a young age when it comes to caretaking and then truly got drawn in during my Nana’s illness. It’s a thing, this caretaker burnout, and I see it a lot in parents in a position like mine. There has to be something out there as a safety net for offering relief to those of us who feel they have no net in which to fall when needed. Now to figure out how to make that happen. Lots of love from me and the bear, Nicole

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