Alan’s story

My wife Amanda came to Dorothy House on and off for about a year. It was always her wish not to be involved in the hospital system and so, for the first year after her diagnosis, it was just a case of coming here to try and understand what services were available if we did need them at a later date. She’d already heard about the way Dorothy House was run, and the care people receive here.

During her last year, she used both Inpatient and Day Patient services. The way we were dealt with and the speed with which we could access services was really important and she came in for respite care on a few occasions. Even when she felt pretty good, just coming in for a day or two gave her a big lift and she always left feeling positive.

Amanda felt that at Dorothy House she wasn’t treated as a ‘patient’.  She felt that hospital was a little disjointed in its care, and did not really feel patient-led but her experience of Dorothy House was the opposite. Amanda was pretty holistic and at Dorothy House that was an open discussion she could have without feeling judged about the choices she might have made. She could have conversations with therapists who knew all about nutrition, and reflexology and massage really helped with her pain. At the Day Patient Unit she did art classes – and that was amazing for her. We used to walk around the Dorothy House grounds in Winsley – even when Amanda was in a wheelchair. She loved that.

For two years or so after her diagnosis she was in pretty good health, but in the last six months the illness really got a grip. Our Nurse Specialists taught me how to help Amanda at home. Their ability to do things for us and their level of knowledge was very high, they knew how to help make things easier – we just had to say.

Dorothy House was also very useful for my family. It’s difficult to care when you’re not a carer yourself, and I had to stop working specifically to care for Amanda –  it was lovely that she could come in here to recharge a bit but also for us, as family, to have a bit of free time. All three children had some counselling, and I did too – at that time we all chose just to have one or two meetings and not take it any further, but we all know that we can go back at any time if we feel we need to.

Amanda was booked to come in to Dorothy House on a Friday for respite – it was just before Christmas. The same day she’d had an appointment with an ENT specialist. She told me in the car afterwards that she felt she no longer had quality of life – she was scared of losing her voice and not being able to communicate. She died early on the Sunday morning. We all believe she decided it was time to give up the fight.

We were all with her on the Saturday, and I stayed with her until the Sunday. Even after she died, the respect Dorothy House treated her with was amazing. I think one of the primary reasons the children are in the strong place they are is that Amanda was always very open with them. They were allowed to go on the journey with her, and while that’s traumatic, she died in a nice way – not in any pain and she was even making jokes with them the night before she died. They didn’t have to witness her being anything other than comfortable and without stress. The nurse was in the room throughout and was able to talk to the children about what was happening – they felt included and it was important for them to know what was going on. After Amanda died they were able to spend a bit of time with her. That was very valuable for them.

Afterwards, we had some excellent family support and we might use that again. The whole family has been very keen to keep in contact and to fundraise as much as possible. It shows what we feel about Dorothy House and how important it was for Amanda.

We felt that Dorothy House was the most important ally we had outside the family. You can’t always talk to friends very easily – some want to mother you, some run away – perhaps they’re too scared of their own mortality. Talking about her illness was important to Amanda but ultimately it was a strain on the family. She could talk at Dorothy House.

I’d recommend to anyone thinking about Dorothy House services to get to know them and find out what’s available. I underestimated the benefits to Amanda. I did think; ‘Oh no, she’s going in to hospice care’, – Amanda had to convince me that it wasn’t the end – at least not for a long time. It allowed her to go on, knowing she had this support network.

You can feel massively alone when you get a devastating diagnosis, but it was good being able to come to Dorothy House early on and speak to them, rather than fearing the hospice and leaving engagement until the last minute. Get in touch as early and as quickly as you possibly can. We saw Dorothy House as a massive support network that you just can’t get anywhere else.