John & Emma's story

My wife Emma and I have been together 26 years this year and have two wonderful daughters, Ella who is 19 and Sophie who is 14. I was diagnosed with Motor Neurones Disease (MND) in May 2024 at just 43 years old. Life was very hard especially for Emma and the girls having to give up so much time to take care of me and not having a way to get some much-needed time for themselves.

I was first introduced to Dove House at one of my hospital appointments where I met Elaine, the hospice’s MND Specialist Nurse and she mentioned about respite stays.  Coming to the hospice for respite gives my family some free time and me time away too, in a place I feel safe and looked after.

I was apprehensive to say the least in coming to the hospice.  I first visited at the end of January/beginning of February 2025; this was in order for the first of two major adaptations to be made to our home.  Emma is my primary carer and for her, the thought of me being away from the family home, letting someone else assist with personal care and daily activities like washing, dressing, feeding etc., was very scary and daunting.

It took a few days to adapt to the hospice, as life has changed dramatically since diagnosis and the disease has progressed quickly, it’s challenging adapting to the changes with the disease let alone letting strangers into my personal space. But the hospice is warm, inviting and extremely relaxed. I have since stayed again for further work to be completed on my home and booked future respite, which I am looking forward to. I joke with Emma, when my stay is due that I am going back to my home, because it is like home from home. You are welcomed by everyone and get to know all the staff, who are the nicest people. The bath (jacuzzi style with lights and music!) is amazing too which helps with my stiffness in my muscles and to relax. It is one of the highlights when I stay.

The staff are the kindest and friendly on all levels. You can talk with everyone from doctors, volunteers, catering, nurses, carers and so on. You are welcomed with open arms, and everyone always has time for you.
It is certainly the people that make Dove House so special. Without their kindness, open arms and ears to listen I wouldn’t have felt so at ease to stay and continue to stay. We are very fortunate to have the opportunity to access respite care at the hospice. I feel in safe hands, and I am looked after so well. The care received has been impeccable from the smallest things to the major ones.

I am not just treated like a patient but more like a normal person, and in my honest opinion, I think that’s all any of us want when living with a terminal illness.

Dove House has made such a difference to our lives. Without the hospice, work could have been delayed on our home, which would have been extremely difficult to do if I had to remain in the home setting. The adaptions were major, walls knocked through, wet room and through floor lift installed which was very messy and would not be habitable for me. Without the offer of respite, it would have been extremely difficult to juggle everything.
 
Emma shares:

Accepting help from Dove House, has helped John with transitioning to having carers within the home and this would never have been possible without the hospice. Dove House helped more than they could know. 
The first step in accepting help is always the hardest but if you ever need it, please push yourself to do it. We cannot thank Dove House enough. They have helped John overcome the initial anxieties of his first visit, which was extremely hard for him, and he now looks forward to returning. Dove House has not only helped John but our family too, they support us all and we don’t know where we would be without them. We are and always will be externally grateful for the support they continue to provide to our family throughout this journey.
 
John kindly shared his storyearlier this year before he died. Our thoughts are with Emma, their children and family.