PH Caregivers, Family Members & Spouses

[Colleen Steele]

In my column this week I addressed not allowing PH to define my son or myself. I have witnessed the effort patients put into being more than their disease but have not witnessed enough caregivers who do the same. Sometime we need to take a breath and remember that there is more to us as well.

As a caregiver, how do you maintain your other identities. Patients, do you have ways of helping your caregiver/loved one to remember and focus on other things besides PH?

[Jen Cueva]

Wow, another excellent column that patients and caregivers both can relate to, @colleensteele!

This is something that I often find; I tend to focus on my social media is PH updates. Ironically, I find that Manny, my hubby, and my caregiver also tend to stay updated on our PH community. It is often a joke at our house that I may not be active on SM, but he is, and he updates me, so I don’t need to be on, too.

We have to remind each other that we are more than PH, and it is often difficult to do this when we like to stay updated with others. This is something that we must be more “mindful” of. I find that taking time away and not feeling guilty is something you and I have discussed before @colleensteele. Cullen, now as he is older, do you find it easier to be more mindful of this? Do you your hubby have more time now set aside? Or do you find this is still something that you both still need to be mindful of?

My hubby, Manny before, would do his Saturday morning bike rides. But this was pre-COVID. Even then, It was always difficult for him to leave me alone with feeling guilty.

[Colleen Steele]

@jenc to be honest Cullen’s health still takes precedence over everything. I’m not acknowledging that in any bitter way. Everything we do for him is out of intense love. There were a few years post-transplant when things were more relaxed but his kidney disease has intensified our concerns again. Brian and I do enjoy non-medical related conversations every day and find shows to watch together. We are very comfortable and happy with that. Due to Covid our options are limited anyway. I make time for the relaxing games that I mentioned in another forum, and I read, take walks…I do make time for myself, and so does Brian. I’m just saying we are always at the ready if Cullen needs us.

[Jen Cueva]

Thanks, @colleensteele; I can imagine as parents, you will always be “on alert” for Cullen. Yesterday, Manny stayed home with me. When my mom called, he answered as I was in the kitchen. She automatically was stressed. But she was happy to chat with me and know that I was not in the hospital. I just had a rough few days after my long day of testing on Friday.

So no matter how old Cullen is, you will be there. I respect that. I am happy that you and Brian get in tv and movie time and read for quality, non-medical time.

[Colleen Steele]

@jenc I was tempted to message you a few times this weekend to see how you were recovering from your busy day Friday, but I’m always worried about interrupting your rest. When you get the results back and if you feel up to discussing them, we are here for you. Praying they will indicate improvement.

[Jen Cueva]

Hi @colleensteele, please reach out anytime. When Manny is home with me, I turn my phone off so I can rest. On his workdays, I leave it on. But, I usually try and rest after 2-3 PM if I can, depending on how busy I am that day.

I appreciate the continued support and love from you all here.

Take care of yourself, too. BTW, any appointments for you this month? ????

[Jen Cueva]

This is an important point. As we lean into being a patient or a caregiver, we tend to forget the other parts of our lives.

Lately, I feel like my life has been consumed with doctor calls, appointments, pharmacy calls, and insurance calls. Busy periods like this, I forget that I, too, am human. I am so much more than a patient.

I am a wife, mom, friend, columnist, and so much more.

What about everyone else? Do you struggle with this at times? Let’s talk about this.

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