Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

What Hospice Gave Us

05/14/2017 | Published by: Marty Barnes

We used hospice to help with our daughter’s final moments. What they gave us was more than I ever could have hoped for. After my daughter passed away in March 2016, I felt it was my responsibility to share our story and help break down some of the misconceptions that are associated with hospice.

We, like many families, had multiple vendors sending us different items each month. We had to make sure orders were placed, charged, and delivered on time. If anything was missed, delayed, etc., that would mean our daughter, Casey, would potentially not have something she needed. This is a big job and takes time to stay on top of everything. The same is true for filling, managing, and administering multiple medications. 

In Texas, hospice takes over all of your equipment, supplies and medication needs once they take a case. As soon as we were officially on hospice, they become the ones to provide anything we needed. The idea is that a family should focus on their loved one and not have to worry about dealing with everything else. Hospice was there to reduce stress and give us time as a family to just be together. 

They also could come into the home a few times a week and could provide not only our existing medical supplies, drugs, etc., but if Casey needed something stronger, they could get it at any time of the day or night. They were there to make sure that she did not suffer for a second and that we all felt comfortable and understood what was happening.

Most patients are on hospice for about 19 days. We relied heavily on Palliative Care for the last 7 years of Casey’s life. However, we ended up with hospice for the last 24 hours. This is very short, and not typical for most patients. 

Because we were on hospice, after Casey passed, our nurse was able to take care of everything. There were no sirens, no police, no EMS. It was just us and peace. When we were ready, she called the funeral home that came for Casey. We were then able to lay her and her things onto the bed ourselves. Everyone treated her and us with respect. It was an awful day, but it was also very beautiful and peaceful. Without hospice there, it would have been very different.

Our experience was unique to our needs, but I think our experience is a good way to see what hospice can provide. I will always be thankful for hospice and the ability to say goodbye to my baby girl.

If you would like to know more about hospice, the National Hospice and Palliative Care Organization http://www.nhpco.org/sites/default/files/public/Statistics_Research/2014_Facts_Figures.pdf has a document full of great information.

Other resources are available on this website in the Family Support section.

Read More Posts from Diagnosis & Healthcare, Family Support

A Whole New World

As a mother of a teenager with autism, I am beginning to see public inclusion changes that are designed to accommodate children with disabilities.

Where Did Our Friends Go?

Living life with a child or children with disabilities can become very lonely and isolating.

Fall-Proofing Your Home

I have a child who falls a lot. It is imperative that our house is as safe as it can be to prevent and limit injuries.