Sunday 18th March

Hi - I just wanted to let you know I'm still around! I do lurk most days but time is short as we have had a hectic week.

My uncle goes back to South Africa this week so things will settle down a bit then. I hope to post more!

No news really. I'm more or less a full time carer now - which has been interesting. My dad is ok just at the moment, it's the mobility that is the main problem for now.

Comment added in May: (warning, this is a graphic one)
I had spent ages avoiding Dad's Stoma Bag. (There is a point to this statement but it will take me a while to get to it!).

On the morning after he got out of hospital, Lorraine and I were getting him ready for the day. In fact, we did this for over a week while the Home Care service was being organised. This routine took us about 2 and a half hours in total... it included tablet taking, breakfast, getting Dad out of the chair and onto the commode, into the bathroom, washing, emptying stoma and catheter bags, dressing and back into the chair. Sounds easy, eh? Not when dealing with somebody who doesn't have the strength to stand for more than 2 minutes, or who cannot lift his arms to put a vest on or clean his teeth. The hardest part was getting Dad up and manouevering him in and out of chairs - we were always terrified that he'd fall, even though he was holding on to both of us. Lorraine would usually take most of the weight, while I guided Dad how to shuffle round into position for his wheelchair. Then we had to remember to put brakes on and take brakes off the wheelchair. Also, throughout all of this, Dad would need to take constant breathers. After being pulled up to a sitting position on the chair. After standing. After being washed. After being wheeled back into the room. All of these things just completely wiped him out.
Mind you, the rest time gave us chance to sort stuff out - clothes, washing, clean bedding, etc. etc.

At this point, Dad was controlling his bowels to the point where he knew when he needed to "go" and so would ask to be taken to the bathroom. But his bowels were also emptying into the Stoma bag over his belly button too (there must have been a small tear in his colon from either one of the procedures/tests or something to do with the disease). First day out of hospital, I said I would do the bathroom stuff (washing Dad). We were kind of hoping that the District Nurses would empty the Stoma Bag. We got into the bathroom and Dad said to me that his bag was pretty full and could I empty it please. I must admit I was quite impressed with how coolly I responded. "Yes, no problem, they showed me how to do that in the hospital". Whilst inside I'm thinking: Oh my god! What if I feel sick. I need a surgical mask on! How the hell am I going to do this.
I got prepared. My preparation for this job involved latex gloves and lots of tissues. Oh and a kidney bowl to empty the bag into.
So, kneeling on the bathroom floor I unclipped the velcro ties and started to unravel the bag. I had no idea how this all worked. I soon found out! The bag was quite full. Dad was helping by holding the kidney bowl (he was sitting in the wheelchair at the time). As the contents hit the kidney bowl, it got heavy and Dad's hand wobbled. Some of the contents of the bowl landed on the floor. Oh god, mum's going to kill me! I got the bag emptied, cleaned and fastened up again - I think I only used about 20 tissues, not bad! Then I had to get Dad out of the bathroom, somehow without rolling his wheels in the mess we'd spilled. That went ok, and we got Dad back into his room and I started to clean up in the bathroom.

So, the irony was, that less than 24 hours after me physically running away from "The Stoma Bag", there I am, emptying it! I surprised myself - never in a million years did I imagine myself doing things like this. I actually don't think I could do it for anybody else - but for my Dad, yes - no problem. After that, emptying the bag became a matter of routine, and Dad & Lorraine invented more practical techniques for doing it. We also bought a special bowl for it!

Washing Dad used to upset me. In particular, when he would lift his face up to me while I carefully washed it with a flannel. He looked just like a little boy, and I used to find it hard to keep from crying some days. Washing his back, stomach and arms, I would be shocked by the weight loss... Neil's kid's call him "Great Big Grandad" and to see his flesh hanging off him and the clear outline of the bones in his shoulders and arms was horrendous.

I would hate it if Dad suggested that Mum come in to help move him (ie. steady the Zimmer frame while he got up). Seeing Dad so weak, helpless and struggling like that was very upsetting at first and Mum couldn't handle it. We tried to keep her out of there as much as we possibly could.

So, in that first week out of hospital - we learned so much, about caring and about our own capabilities. Also about how it was essential to toughen up and get on with it. In fact, having to be so practical actually helped take my mind off the awfulness of the whole situation. I was almost disappointed when the Carers started coming in to do these things... I felt like a spare part sitting there while they did all the washing and moving etc. Although we would still have to move Dad until his hoist and hospital bed arrived, as the Carers aren't allowed to do most of the lifts that we used to get Dad up (they're "illegal" apparently, in Home Care terms).

Despite all the things we've had to do for Dad, he has not once complained - he hasn't moaned that he can't do them for himself. He hasn't ever said that he feels undignified - and yet sometimes he must have done.

He just accepts it, does what he has to do, and I hope, is glad that we can be there for him.