Some positives

On the weekend I asked if Peter could be assisted to stand out of bed to see if it was a possibility. This caused some concern that I was seeking to ask Peter to do things he couldn't do any more. After consultation with the weekend doctor, I was assisted to do so on Saturday after lunch. Peter was unsure whether he could stand or not but he did it with very little assistance even though he has lost a lot of his calf muscles because of being in bed.

As the next step, I asked that if he succeeded with that milestone, he be placed in the commode chair and wheeled to the toilet so he didn't have to be toileted in bed - a very distressing situation for Peter. He managed this well and was relieved to be able to do so. The next thing I asked was that he have a shower if possible (sitting on the commode chair in the shower) . He managed this well and really enjoyed having his first shower in 20 days. Afterwards he looked better and felt better but was advised that perhaps he should only do that every 2nd day.

We were also told that if he wanted to get out of bed and should happen to fall then no one would catch him because nurses are not covered for injuries sustained in this way. This frightened Peter a great deal. So I said that while ever I was there and he wanted to get up I would support him physically and if he should want to get up to the toilet when I wasn't there then he should ask for the lifting machine or a bedpan and as a last resort, the adult incontinence pad.

We were also told that if he wanted more active treatment then he would need to go to a hospital. I am keen for him to be able to stand and walk 4 steps so I can take him home if at all possible. I know this might not be possible, but we would both want to be able to do so if we could.

Yesterday, Sunday, he asked to go to the toilet in the same manner and also asked for another shower and hair-wash, which he accomplished well. An hour or so later he asked if he could get up into a chair and a deluxe chair was provided which has air cells in the seat to support but not add to pressure problems. It was a real pleasure for Peter to have a different outlook through the sliding doors and to be able to be out of the bed. He said he didn't want to be bedridden.

He sat in the chair for 3 hours, played scrabble (and beat me YET AGAIN!) and had a visitor before asking to go back to bed. That was 2 hours longer than anticipated. Also he got up successfully again about an hour later for another toilet stop. As he said "I'm not aware that lying in your own mess is considered a beauty product for the skin!"

I have just received an SMS from Peter now (8.44am) asking when I cam coming in as he is waiting on me to have another shower. So he is still with us and very engaged.

We understand from the weekend doctor that perhaps all we can hope for is a suppression of the pneumonia with antibiotics and that this may still kill Peter and we don't know how long that might be. However, as Peter has expressed very clearly: "While I am alert and compus mentus I want to keep living."

So on that basis I have asked the physiotherapist to come to see him to help with his leg strength and standing stability, as well as what we can do to keep up the drainage of the fluid on his immobile right arm while trying to avoid the pressure area on his elbow getting worse; also to keep up the clearing of his chest - the most important thing of all. Also I hope the nutritionist can visit today so we can adjust his feeds to allow for his condition and the fact he wasn't on enteral feeds for 2 and a half weeks.

So, in Peter's current situation, I am reminded of the famous Monty Python "Plague" skit : "I'm not dead yet......" and what a wonderful thing that is.

Motto for this week: Don't ever give up and don't take everything someone else tells you as read!