What Have You Learned As A PH Caregiver?

[jen-cueva]

What an excellent way to share how you learned the intricate details and can share this with others. I like how you broke it down; it reminds me of being in class.

Thanks for sharing this, @colleensteele. I know many will benefit from reading these tips.

[Vivian]

Hello to everyone,
I wish you all doing well .

Colleen, thank you for that topic. From mine and my sister’s experience, as mom’s caregivers, the road was not easy. Especially with the placement of the subcutaneous pump things changed a lot. The first thing we did was to write down and follow exactly the instructions that given to us by the medical team. The doses, the refilling time, everything was “by the book” and we were very cautious. From the first moment we kept notes and printed short instructions, that helped our mother a lot which, although not familiar with technology, learned to handle the device on her own without any help very soon. Personally, I don’t stop reading, searching, asking what could relieve the various side effects she still faces. Being a caregiver it is a process, you are training every single day and an advice from her doctor has helped me a lot, to observe my patient not just take care of her, she is our constant education. 

[jen-cueva]

Hi @vivianliakouli, It sounds like you and your sister stepped up to learn all you could on how to manage your mom’s PH best. SubQ is a bit overwhelming for most, from what I’ve heard. Kudos to you both for making this new normal for your family more manageable.

Do you and your sister take time out for yourselves? Finding a balance and caring for yourselves is often left at the bottom of the caregiver’s list.

Thanks for sharing these experiences with us and how you learned to care for your mom.

[Colleen]

@vivianliakouli it sounds like you and your sister have been excellent “students” and very loving daughters. I have the feeling she had been teaching you both well long before PH took over the curriculum.

How is your mom doing? How are you doing?

[Vivian]

Thank you for your responses. Well we had a really bad summer, she got covid and she had extremely fatigue, she was  in bed for a long time. The most difficult part was when she needed to change site while she was sick, can’t tell you,  now she is quite better but she needs time. Something more I learned during all this, is that most of all a caregiver needs to make fun, to be entertainer it helps especially when things become so difficult, there is nothing else we can do at least let help them smile.. Jen, you said the magic word “balance” .. still working on it, no I m not good at that I know it’s importand and I m (we) trying, there is no peace inside me though but I leave it there. Dealing with an incurable disease is something that resets the way you see things in many ways, but as my lovely Sinatra says “that’s life”..! I will continue to hope and believe that better days will come for every single patiend and mommy.

Sending you my best wishes, be happy with your loved ones!

[Colleen]

@vivianliakouli I know all too well how difficult it is to create balance in your life when you are a caregiver.

But you have brought up a point I have not given a lot of thought to, that caregivers must also be entertainers. And you know what, that isn’t always easy. Sometimes we’re tired, and smiling doesn’t even come easy for us, but we make those corners go up, don’t we?

Thank you for mentioning this…I think you have given me a new topic to consider for a column. Would you be interested in allowing me to ask you a few questions via email that I can include in one? If so, send me an email at [email protected] and I will get back to you!

[jen-cueva]

Wow, @vivianliakouli, I can’t imagine how difficult this has been for you and your sister. I’m happy that she is doing better than when she had COVID. COVID, on top of PH, is a disaster, but somehow we pull through.

As a patient with PH, I know that the love and support of my husband and close family and friends help me get back up and keep PHighting. I wouldn’t be here if it weren’t for my caregivers. This Thanksgiving season and always, I’m beyond grateful for my hubby, Manny.

I never thought of the caregivers as entertainers, too. But this is often the truth. But some days, your caregivers need a break, too, so the entertainment must come from others. Do you try and find things you enjoy or rest when your mom is resting? Do you and your sister alternate the caregiving tasks, so you each have some free time too?

Thanks so much for sharing. @colleensteele, that is going to make an incredible column!

[Colleen]

We have a few new members who are caregivers so I thought I would bring this topic to the top again. What have you learned as a PH caregiver that might benefit those just starting out on this journey?

[jen-cueva]

Excellent share, @colleensteele. For us patients, reading through older topics often helps us through a difficult time. We have to take care of our exceptional caregivers.

I was a caregiver working in nursing and also when loved ones needed me. Like most caregivers, I ran ragged, and my self-care was at the bottom of my “to-do” list. Eventually, when I began to experience symptoms of PH, but not yet diagnosed, I changed. I then thought of all the families I would remind them, “you can’t pour from an empty cup.”

I sometimes try to be a caregiver, but I know my health has to be a top priority.

For our caregivers, new and old:
*Take time for yourself
*We can be left alone or with others for you to get a break.
*We appreciate you more than you’ll ever know
*Know if we are having a crappy day, we often want to rest alone.
*We hate you having to do things for us.
*Thank you from the bottom of our enlarged hearts.