How do you care for yourself while caring for a chronically ill partner?

cathy_is_in_article_sizeCathy DeBuono, licensed psychotherapist, empath, radio personality and actress you may know from “A Perfect Ending,” “We Have to Stop Now” and “And Then Came Lola” is here to help you sort out your deepest thoughts.

Question for Cathy? Post in the comments below or send it over.

BY CATHY DEBUONO
CathyIsIn.com

Hi Cathy,
My name is A., I have been following your article, “The reality of self-transformation” on Lesbian.com. I like your description of the gap. It is a good way to describe the in-between place of awareness and manifestation. The article caught my attention because of the situation I find myself in where I am feeling an overwhelming sense to change how I approach and experience life, but am still experiencing the confusion and am overpowered by habitual patterns.

Some background: I am 45, an artist, nature photographer, web designer, astrologer and a junior in college who is still struggling to figure out where I fit in and what the fuck it is that I am supposed to be doing on the third rock from the sun.

The last three years have been very stressful. My partner, T, has been struggling with numerous surgeries and final stage renal failure. She’s been on the kidney transplant list for almost three years and will be starting dialysis in the next two weeks. She is tired and getting weak.

I am her assistant and caretaker. I do whatever she needs, whenever she needs it. I haven’t been able to hold a job in three years because her medical care requires a free schedule. Along with that, I have been in and out of serious depression for the last few years and very reluctant to admit it, much less to want to deal with it or ask for help.

I have been living in a constant state of danger awareness or hyper-awareness for several years. My edges are frayed and worn. I feel guilty for the constant struggle with the urge to disappear in the middle of the night and just start over. I am angry. I isolated myself and stopped communicating with friends because the myriad of emotions I go through in a day are exhausting. I am tired. I do not want to be where I am. The urge to escape is overwhelming, simply uncontrollable. I surf the internet when I need to work. I play Xbox to be someone else. I self-medicate. I feel trapped, lonely and anxious all the time. I barely sleep.

At one moment, I decided that if I was going to live through this, I needed to get some space and be me, the idealist, the dreamer, then, I disconnected and unplugged myself from the constant drone that chronic illness creates. I am different in silence.

So back to the gap, I became aware of the need to change. I’ve made several changes; I started connecting with friends again, more creative time, regular exercise, better diet, and less alcohol. I hike five miles in the mountains daily. I have lost 25 pounds. Physically, I am in better shape now than I was four years ago.

The need to be free is greater than ever. And then, confusion reigns, I cry every day, I barely sleep, I self-medicate and feel as if every day is a battle to stop the end of the world. Why? Because I am in the gap, the in-between, yet tethered, T is still sick and I do not know how to be free until she is.

Thanks for the article. The positive light that you are and the work you do are appreciated. Thank you.

A.

Hi A,

I read your letter and had the overwhelming need to remind you that every thing you just described, all the thoughts you are having and your being’s all-around response to the position you have been in as the caretaker of someone with a serious chronic illness, is absolutely “normal.” Allow there to be enormous relief in knowing that you are experiencing the effects that almost all primary care givers of the chronically ill experience. Perhaps you already knew this.

Allow there to be some kind of relief in knowing that your feelings of being trapped, isolated and anxious are there because you are trapped and isolated. I hope you aren’t also feeling guilty or shameful because of these feelings and thoughts. That would be a useless burning of your emotional and spiritual fuel. It serves no purpose and only depletes you further.

I was elated to reach the part of your letter where you turned a corner toward exercise every day, more nutrition and less booze. These things are so important, so simple, in that how to incorporate them into our lives is not at all abstract. Yet those few things are nearly impossible for so many folks to manifest, let alone with consistency. Allow yourself to breathe in the relief of observing your own capacity for the discipline to make that happen despite the weight of depression. It’s an enormous skill to remember you have. Now, you are getting to observe it.

It may seem I’m taking a moment to point out the obvious. Whether these things have occurred to you or not make no difference though, my aim was, to at least wrangle your consciousness today for as long as it takes just to read this email and have it focused on those few simple truths. Breathe them in.

When we are caring for someone in the position that T is in, we are challenged in so many ways to be selfless that sometimes we can go too far and forget that any consciousness we focus at ourselves doesn’t equal “bad.” I’m speaking to the part of your letter where you mention hyper-awareness, the on-guard night watchman in you. Decide to allow him/her to change shifts at the end of the day and allow your full consciousness to abandon all else. For a few minutes a day, “shift” your consciousness only toward the being it is manifest in this lifetime.

At a certain time of night, literally and simply, go inward. Breathe slowly and deeply for “shift change.” You are reminding your consciousness, on a very deep un-awake, automatic pilot level, to snap out of it by joining you, and only you, for just a few minutes in the present moment. Just breath, just release. There is no right or wrong.

I feel that’s all I was meant to tell you at this time. You are in such an important and tender place in your life today. Confusion is part and parcel of the experience of navigating such tender times. Tomorrow, it will be different. Many tomorrows from now it will be different in ways you couldn’t possibly foresee from here. So do not attempt to; that is futile, it creates anxiety, want and worry.

I hope this hasn’t just added confusion. Be well. Be present. Although tomorrow is coming very quickly, you’ll never get there today.

Further, I’d like to encourage you to seek a support group for caregivers of the chronically ill. I think you would do very well to join one of those for many reasons. You are in a bit of a suspended existence, sort of in a bubble. The ironic thing is that this is such a common experience for people in your position that connecting for just an hour a week with others who can actually identify with you is huge. I think it’s a great idea for you.

If there isn’t a support group specifically of that description anywhere local, look for other kinds of support groups. Support at its core is made up of the same stuff. You don’t want to find a group totally out of the ballpark, but there may be something that is still very appropriate for you to join. The group facilitator should be able to help you assess that before hand.

Beyond that, with the internet our fingertips, I can guarantee that if you devote a few minutes to finding an online support group for primary caregivers of the chronically ill, you’ll find them in abundance. Just be sure to choose one that isn’t fully anonymous and is facilitated to at least some degree by a professional.

Remember, and I believe A, that you get this, the gap can be a moment in time or an elongated period in our lives. Either way, all that is required of us to navigate it is to not control it, but to become as still and present and observational of it as is possible and to keep our heart aligned in love and good intentions — and make our choices one at a time. The rest absolutely takes care of itself.

Cathy

“I am an empath, actor, therapist and a firm believer in truth over diplomacy.” — Cathy

For more, visit www.CathyIsIn.com

Tune in to “Cathy Is In: The Cathy DeBuono Show” LIVE! with co-host comedian Jennie McNulty, MONDAYS at 3pm PT/ 6pm ET only on LA Talk Radio.

Listen here: archived episodes.

Watch Cathy’s films on demand:
And Then Came Lola
A Perfect Ending
We Have To Stop Now

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