This forum is a place for those caring for a loved one with pulmonary hypertension to connect. Share tips, ask questions, etc. Veteran parents and caregivers may help those with newly diagnosed children and spouses.
When you have PH or are the caregiver to someone with PH, it might feel like getting a good night’s sleep is next to impossible.
Your loved one with PH may often be up late battling symptoms or there sleep schedule might be off due to the need for more naps during the day. As their caregiver, if they are up, then you probably are too. As a mom of a child with PH, even if my son was sleeping I often would often be awake and on alert, listening for sounds of struggle.
Sleep deprivation can be a serious problem for a caregiver because when you are run down, you are at risk of becoming sick yourself. It is important for the caregiver to take care of themselves and get proper rest but how, when a caregiver needs to be available at all times?
What are your sleeping habits? Do you get enough sleep to sustain you and if so, what is your routine? Share your healthy sleeping tips.
Here is an article that offers advice and a link to a free booklet, ” Your Guide to Healthy Sleep”.
Both PH patients and caregivers alike experience some sleep deprivation, I would think at one time or another. Probably more often, than we would prefer.
As you mention, when your son was able to sleep, at times you would stay awake watching him. My husband often stays awake on nights when I am having rough times. He has often told me that he wanted to be sure that I did not stop breathing. Although this was emotional touching, it was tough as I would rather he rests, too.
As you mention, it is so important that caregivers take care of themselves, too. Sleep deprivation can take a toll on your bodies and put your immune systems in jeopardy.
I am sure trying to balance caregiving with maintaining your own health can be quite tricky most days. Kudos to all the caregivers, for sure.
Although I am a patient, not a caregiver, I would suggest naps when and if you can. I also suggest to all caregivers,( from my days as a young mom), sleep when they sleep and are resting comfortable. I know this is easier said than done. Often in the hospital, I know that when I am resting, which is not often as I am sure you all understand, my husband will try and nap then too. Often these little naps are all we can get and are much needed.
Unfortunately, sleep deprivation is more common than most talk about.
Jen, when you mention “sleep when they sleep,” it reminded me of the advice we might give to new parents. It applies though, doesn’t it? I can remember being in the hospital with my son and the nurse asking me why I was still awake when my son was sleeping. Even in the hospital when there are other people to make sure that he was doing ok, I still couldn’t resist the urge to keep my eye on him. I learned in time that I’m no good to my son when I was utterly exhausted. Not just for my good, but his too, I began to recognize that taking care of myself was important too. Still, sometimes easier said than done.
I can understand your concern for your husband when he stays awake to watch your breathing, but that is so sweet! He obviously really loves you and thinking about it brought tears to my eyes. I’m so happy for you that you have such a caring man in your life!
Yes, Colleen, that saying certainly applies here, too.
I am glad that you realized that you are more helpful to your son when you’re taking care of yourself. Too often, caregivers experience ” burnout” and sleep deprivation certainly can contribute to this burnout.
Your son sure is lucky to have you. I’m sure you will never know the appreciation and love he has for you.
Aww, thank you, I am certainly blessed with a good man. I couldn’t imagine this journey without him.
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