PH Caregivers, Family Members & Spouses

Thanks for sharing, Colleen. I think that this is a great idea, but I do wonder how many caregivers will use it. I think it could be helpful. I think that the fact that it offers emotional support is a much-needed resource for caregivers.

If this had been available four years ago, when my son was first diagnosed with PH, I definitely would have made use of these resource. I think I’ve got a handle on this “being-a-mom-of-a-PH-patient” thing now, but I think I’m going to add the phone number and website to my contacts list (just in case). Thank you so much for this wonderful resource!

gift cards are one of my favorite things to get actually ! As we got older, my parents just ended up putting the gift cards or money in a stocking and that was out gift! I loved it !

Yes, Amazon is an energy saver for certain! I really can’t handle the malls anymore. The crowds stress me out and I’ve find it easier to stick to a budget if I shop on-line. I do handmade gifts for special people, like the knot tie blankets, scrapbooks, and the picture calendars that can be made through Walgreens and many other places.

When my…[Read more]

I usually try to enjoy the holiday. Something that makes me really stressed is doing my shopping last minute. I always put a lot of pressure on myself to buy so much for my family because I don’t like to show up to places without anything. But I have learned that the gifts really don’t have to be expensive, just a thoughtful gift really goes a…[Read more]

Hey Colleen,
I am not a caregiver myself but can tell you that my mom loves her Fall decorating. Since I was a kid she loved planting mums in the yard , going to the farms to get cornstalks to hang up around the house, nice wreaths, etc. We usually enjoy doing things like going pumpkin picking and apple picking as a family. This has always been a…[Read more]

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.