PH Caregivers, Family Members & Spouses

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 app…[Read more]

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…[Read more]

Great share, Colleen!

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…[Read more]

It definitely made me feel way more in control and does make me feel more in control when other people are the patient (including my family members) . I NEVER like to see anyone I care about in such a vulnerable state or really sick, but knowing that I know what it’s like by now and can help them out the best I can really makes me feel more in…[Read more]

Thanks Brittany. I also feel stressed whenever I’m dealing with my own health, especially when it interferes with caring for not just my PHer, but my whole family. I don’t know whether it’s sweet or sad, but whenever I am sick my son goes above and beyond trying to take care of me. My guess is that it makes him feel good being on the other end for…[Read more]

I can only imagine how physically and emotionally difficult that was for you. It is weird to be on the “other side” of things and getting a glimpse into what we go through. I wouldn’t wish the “patient” side on anyone and I’m sure you feel the same way as a caregiver. It is also hard to see the caregiver side of things (like my recent experience…[Read more]

Great topic, Colleen! Although I am an adult with PH, prior to PH, I was a caregiver. I know that for my hubby, it’s often hard as I want to do it all. ( I know, I sound like a toddler). But for me, releasing things that I once could and want to do is tough. I know for my hubby this is a constant battle. I also realize that he’s just trying to h…[Read more]

Kathleen and Colleen,
I can only imaging the cost of staying there and meals when you are awaiting transplant. It was bad enough for the few months time that I spent in the hospitals this year. My mom easily spent over $40 on food a day just for her meal costs. We were lucky that the hospital had some type of assistance and financial discount…[Read more]

Kathleen,
Insurance help for caregivers unfortunately wouldn’t apply for a lot of jobs, especially those that are self employed. That would be extremely difficult ! I feel like union positions like teachers that have things in place to help protect their jobs are usually pretty good with getting the much needed support they deserve, especially…[Read more]

I totally agree it’s nice to have that reassurance for donors that their money is going directly to healthcare expenses. I am still expensing copays to my Help Hope Live fund. But we were lucky that friends also donated via YouCaring so my parents could use that money to cover their meals and housing costs that weren’t covered by the…[Read more]

That’s great that your team has helped out your caregivers with insurance and absences! My dad’s work was really supportive as well, but my mom is self-employed as a real estate agent and didn’t have the same benefits.

Kathleen, like you, we have great insurance but needed help with co-pay assistance, lost wages, travel expenses, lodging and food during transplant, etc.. COTA has and continues to help us a great deal! I am so glad we went with them because our spending is carefully monitored so that the money we raised is only used for transplant related…[Read more]

Kathleen,
I am really grateful for the fundraisers that I had to cover some medical costs and equipment costs that aren’t covered by insurance. I ended up putting on fundraisers online for myself at one point because I knew how much I put on my parents and how much they have sacrificed. I am grateful that I have doctors who help out my mom and…[Read more]

This seems most valuable if you’re already paying for a respite nurse or home health aide. Does anyone on our site have this in place already? $500 annually wouldn’t even cover a month of extra assistance!

It’s something, at least – I hope we see more programs like this and more recognition of the burden on caregivers.

I have great insurance…[Read more]

Brittany, it does get exhausting having to repeat your history and current status over and over to various people. My son does his best to respond to his personal doctor’s but for the rest, such as the “doctor’s in training”, he points to me and I take over the talking. Like you said, having as much on paper that can be handed over really comes in…[Read more]

Colleen,
Something that helps me is to immediately notify my team of doctors when I am in the hospital. You would assume that they would automatically be notified, but this isn’t always the case. My mom (who is my caregiver and support system while in the hospital) makes sure that my main doctors are in direct contact with the hospital staff that…[Read more]