Joshua was diagnosed at just 8 months old, and the referral process was done by our local complex needs team. I found the word hospice so hard, and did not want to take that step as I related hospice with death…but when I took the step I thought to myself: “how wrong was I?” The support for us and our family has been so valuable as we can come away to spend time together , and they make us feel so welcome – Joshua and his sister both get so upset when it’s time to leave the hospice.
Our thoughts on going to the hospice before Joshua even showed signs of Niemann-Pick was to get familiar with the surroundings, and get Joshua used to being left. We stay in a family flat and Joshua has only just started staying in his own room downstairs. We are gaining trust for when Joshua’s needs become more progressed, and we will eventually leave Joshua for rest-bite care.
I can not tell people how helpful this kind of support is. It is truly what keeps us going as it gives us strength to get through, as we know when things get tough we will feel at home. The work they do is so valuable and seeing Joshua so happy is what makes us happy!
You can learn more about Helen & Douglas House, and the fantastic work they do, at their website here.
