PH Caregivers, Family Members & Spouses

[Colleen Steele]

Throughout my son’s PH and transplant experiences I have often been asked, “How do you do it all” and told, “You are so strong”. It does feel good when people acknowledge how much goes into caregiving, but sometimes it can also feel like pressure – pressure to live up to the image people perceive of you.

The truth is, there is no such thing as a perfect caregiver. As I mention in my recent column, “Caregivers function through trial and error, experience moments of emotional imbalance, often feel indecisive and sleep-deprived, and even slack on personal hygiene because they forget the importance of taking care of themselves.”

We do the best we can but the job is too complex to be perfect at it. Do you agree? Do you ever feel pressure brought on by yourself or someone else, to be a perfect caregiver?

Here is the link to my recent column, “Perfect Caregivers Are Not Real“.

[Jen Cueva]

Wow, another excellent column, my friend, @colleensteele! I like the analogy of Mary Poppins, and thanks, now I am singing that song, LOL.

This is an impressive piece that shares that everyone, including caregivers, is imperfect. I think that sharing this knowledge and will help other caregivers learn this early on.

Acknowledging this fact is important. Caregiving is a tough job, and as you mention, often keep their care and health at the bottom of an insurmountable list.

When caregiving for a loved one, you make some excellent tips. Asking for help is difficult but needed to help prevent caregiver burnout.

As a caregiver myself before PH, I can attest to many of your comments. There is often that challenge of trying to be that perfect caregiver. But in reality, that is not possible. Trying to be perfect is setting ourselves up for failure and comes with much more added pressure.

You are an amazing caregiver to all, and I know that on those toughest days, tears come flowing in private places. I have found that most often in the shower or at times on the phone with close friends and family members who I trust.

Communicating with other caregivers and sharing those trial and error tips are helpful. This is why this forum is such an awesome place to come and share these experiences and thoughts.

Thank you, @colleensteele, for sharing your experiences and your vulnerability. So many others can learn and relate to this piece.

[Colleen Steele]

Thank you @jenc. I’ve heard PH patients comment that they sometimes feel frustrated when referred to as strong, courageous, an inspiration, etc., because it make them feel like it’s an expectation. I think caregivers experience a similar version of this.

We are all human. We make mistakes, have emotions and can’t always give it all we’ve got.

My hats off to all the “good” caregivers out there. You don’t have to be perfect to be someone’s caring hero.

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