PH Caregivers, Family Members & Spouses

[Colleen Steele]

PHA has shared that NORD (National Organization for Rare Disorders) are offering a Caregiver Relief Program. Accepting help and admitting that you need to make time for yourself might be difficult to express and even more so to arrange. You might even feel a sense of guilt but your emotional and physical health is as important as that of your loved whom you provide care to. Find time to relax, refresh and maintain your own health! If you feel like that is easier said then done, NORD is offering you an opportunity to make it happen. If you decide to apply for the program and make use of it please share your experience with us.

https://phassociation.org/nord-launches-caregiver-relief-program/?mc_cid=b97139b859&mc_eid=96f00f1a7f

[Kathleen Sheffer]

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 that covered most of what I needed post-transplant, but we still did fundraisers to help cover lost wages and expenses for my caregivers.

Help Hope Live covered some of the expenses for my caregivers, but not intangible expenses like lost wages.

Colleen, what was your experience with COTA reimbursements?

[Brittany Foster]

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 allow her to take TCI (caregivers insurance) and have excused absences from her work when she takes me to medical appointments since she is designated as my caregiver. The doctors I have are more than willing to fill out any forms that are required and fill it all out pretty quickly. Definitely grateful for that. It helps that she is part of a teacher’s union too and can take that time off and get paid for it.

[Kathleen Sheffer]

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.

[Brittany Foster]

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 when dealing with all the added stress of having the care for a child. I feel like these benefits should be a no brainer for all types of employment but we definitely have a long day to go until we get to that point!

[Colleen Steele]

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 reasons. It was so important to us that people know exactly how their donations are being spent. We did have home health aides come in as Cullen’s PH progressed and Milrinone was added to his backpack. We were fortunate that our insurance did well by us through that period too. However, I never left my son’s side even when the nurse was there. I always kept myself on duty. I think that is more about being a mom than a caregiver. In regard to the amount,like you said, $500 isn’t a lot but for those who need it, at least it’s something. I hope those who really need it are making use of the offer.

[Kathleen Sheffer]

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 tax-deductible donations.

[Brittany Foster]

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 with paying for the cost of hospital parking. It boggles my mind that that’s not free!

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