Hi everybody, it’s great to be back home after two and a bit weeks in the hospice. My stay was comfortable and had perks such as reflexology, head massage and Reiki, but most importantly I had access to a bath. I would like to say thank you to the staff at St Michaels who took such good care of me.

But there is no place like home, particularly when it comes to watching Oscar who is growing ever more rapidly. A huge smile comes to my face every time he comes into the room, which is now more often than not under his own steam.

I will write more over the next few days but it may interest you to know briefly that we have hopefully resolved the Advanced Directive issue positively, more details to follow so watch this space.

Speak Soon
Neil

Imagine if you’ve had nothing but bed baths for weeks, imagine how you would feel to be submerged in water and feel weightless when you’ve been unable to lift your limbs. It was a great luxury for Neil and really lifted his spirits.

It took four of us to move him from his room. We had to have him undressed and ready to be lowered into the water, then put the sling around him for the hoist (which can’t have been comfortable for him naked) then we had to carefully position a towel to protect his dignity for the journey from his room to the bathroom.

It took two people to maneuver the hoist, a third person to stop his body and legs from swinging into the doorway and keeping the towel in place, and a fourth person to carry the ventilator and keep their attention on his mask to make sure it wasn’t slipping. There was a tense moment lowering him into the water and undoing the sling from the hoist but once we had positioned him and he was happy that he wasn’t feeling like he could slip, the nurses left and gave us a bit of time alone. I had to be careful washing his hair,  I couldn’t get water near his nose and mouth or get shampoo in his eyes. I took the opportunity to cut his nails while they were softened with the water. He was very trusting. There was an alarm button very near the bath, if I got into trouble or he started slipping I only had to take one step to hit the red button on the wall.

It was here we had conversations about the future. Being at the hospice gave us these moments. When we were at home there was always too much to do or too many people around to find a quiet moment to talk and we hadn’t wanted to acknowledge the need for these difficult conversations earlier on in his progress when we had more privacy.

He told me I would meet someone else. He didn’t tell me he wanted me to meet someone else, just told me as fact. I think it was the only way he could talk about the subject. I knew the thought of another man bringing up his child was heartbreaking for him, it was heartbreaking enough for him to watch his friends push the swing and be the ones to make Oscar laugh. He couldn’t do much to entertain a one-year-old while sitting motionless in a chair, and it was difficult to think of ways to make Oscar interact. These are the little things that make MND earn it’s title of ‘cruel’. Neil also knew that Oscar was too young to develop memories of his father or his decline. He had to trust that I would put Oscar in good hands, and I remember his words being: ‘Just make sure he’s not an arse!’ For this he managed to muster up one of his cheeky smiles, rather chuffed with himself that he knew I would remember his final words on the matter.

I phoned ahead one day at the hospice to say that Oscar had started walking properly and asked if they could push Neil up to the window to see him walking from the car. The night before Neil went in to the hospice, Oscar had taken a hand away from standing at the sofa and walked across the room to the door. Unfortunately, Neil hadn’t been facing in the right direction to catch it, and no matter how much I encouraged Oscar, he wouldn’t do it again. I had bought Oscar a little children’s rucksack in the style of a turtle shell to help him walk as he was also going through that annoying little phase of not wanting to hold my hand. The little rucksack worked wonders and gave Oscar the confidence to start walking. I’ll never forget how proud I was walking Oscar from the car with Neil watching at the window and a circle of nurses around him all smiling.

These two weeks at the hospice had been good for Neil. Having a doctor on site checking on him daily had meant that his drugs were now properly balanced and he had less stomach upset as a result. It had been a change of scenery for him, he had been able to put his trust in others and he had been given relief from feeling like he was a burden on his family. No matter how we treated him, he couldn’t shake that feeling away, so having a chef that would tailor meals just for him, along with the alternative therapies and the attention and conversation from the fabulous staff there meant he had been able to enjoy some of his stay. But as Neil says, there is no place like home, and although this house wasn’t our home, we were all three back under one roof. – Louise (2013)