Stephen

It is 4.30 am and I am unable to sleep.

Stephen was taken by ambulance to S John's Hospice yesterday afternoon, his condition having deteriorated to such point where it was impossible for him to be nursed at home.

He looked peaceful when I saw him last night, but it is obvious that his life is now drawing to a close.

For whom the bell tolls . . . .

It tolls for me! Have placed my old school bell next to Stephen's bed so he can ring when he needs me.

Doctor called yesterday morning - to check the infection in Stephen's foot - prescribed antibiotics. Apparently it is dangerous if the infection gets under the skin - spreads to his legs - could set up diabetes. The oedema has now spread up the legs to his stomach, which is vastly distended. He is also experienced pain for the first time when doctor gently pressed the liver.

Doctor took me aside - explained the situation and what to expect over the next week or two (not months). Discussed end-of-life care and whether I could cope with him at home over the following weeks. A special pack is to be ordered - to be kept at home for the medics to use as Stephen deteriorates, when he may, or may not - depending on how he feels - be transferred to the Hospice.

Stephen remained in bed all day - ringing the bell, as necessary.

However, in the evening, as I was sitting trying to relax - doing a bit of mindless knitting and watching women giving birth on TV (will opt for a caesarian next time) - the bell rang furiously. I panicked - ran upstairs to find a very cheerful Stephen sitting up in bed doing the Times crossword and requesting a second glass of Wisniowka (Polish cherry vodka to the uniniated).

I think you could say we are on a rollercoaster!

Another grim day . . .

Another grim day. Stephen has an infection in his foot, which looks nasty and could spread to his leg if not treated. Parts of his legs are weeping already. Chiropodist coming at tea-time.

Oedema nurse arrived this afternoon - not much she could do - apart from showing me how to massage his legs. Says it is due to problems much higher up. She is going to see Stephen again on Thursday at the Hospice when we see Professor MB and the hospice team, including social services, for a complete review of Stephen's situation.

My chiropodist phoned whilst nurse was here - so it was useful for them to have an exchange re possible medication and treatment for Stephen's foot.

The chiropodist is super. Highly qualified and the best in the town if not the county. I've been treated by a few chiropodist/podiatrists but NB beats them all. She dressed his foot - said it was a bacterial infection and asked me to call the GP for a prescription, but Doctor said he wanted to see Stephen himself and will call here tomorrow. For which I'm thankful.

Stephen has spent an uncomfortable day - angry and stressed - made worse by collapsing in a heap on the stairs this evening. We spent an hour struggling to get him up the stairs - out of breath with every step he took. We are supposed to be having a stairlift installed - so I will be ringing the firm in the morning to get them moving. We can't go on like this.

Stephen was extremely distressed and weepy when I finally got him into his bed.

Morphine will help him sleep for a few hours.

NB: I trust any heavy smokers or drinkers out there are taking heed of this situation.

This could quite easily be you . . .

Exhaustion . . .

A terrible weekend. Oedema nurse did not turn up. Phoned at 5.3o pm Friday evening to apologise. Hopes to call tomorrow. Meanwhile it's a case of DIY, legs up and home massage.

Weekends are not the time to be ill or needy.

Have arranged for my chiropodist to visit and attend to Stephen's swollen feet tomorrow evening in the hope it will make them more comfortable. He cannot wear shoes now - only soft granny slippers with velcro fastenings, which he hates.

Stephen was very angry and bitter this weekend - and as I am the only one here - got full blast of his feelings. It is not easy being on the receiving end of such ranting and I am becoming exhausted. Stephen can no longer walk properly and he either remains in bed or sits in an armchair whilst I run around like a scalded cockerel seeing to all his needs - not to mention cooking and housework.

He has now become quite demanding with everything and everyone. Is determined to survive. Seems a dreadful thing to say but, having given 13 months of my life to his constant care, I am afraid that my own health may be compromised which will do neither of us any good.

Not a good day . . .

Stephen had a bad day yesterday, followed by a very bad night.

Our local pharmacist turned up on the doorstep during the evening - with morphine - prescribed by our GP and faxed to the pharmacy. There's not many who would take the trouble to do that and we were especially grateful for his thoughtfulness. The medicine proved invaluable during the night.

Stephen had difficulty moving this morning - so remained in bed for the whole day and slept most of the time.

He is now wide awake - it's 1 a.m - and I've gently massaged his legs, changed his nightwear for the 3rd time - was damp with sweat - and plumped up the pillows.

Made Stephen some food and a warm drink but he asked for a thimbleful of Polish cherry vodka to warm his tum before he settles down again. Doc says there's nothing to lose by having the odd glass of wine or whatever at this stage if it gives Stephen some comfort, so I brought him a liqueur glass half full of Wisniowka, which he thoroughly enjoyed.

The district nurse is calling here tomorrow morning to keep an eye on Stephen, and I shall be very glad indeed to see the oedema nurse who is coming to treat his legs - and show me what to do.

The Outreach nurse rang this morning to see if I needed some 'respite' - i.e. go shopping whilst a nurse sits with Stephen. This could prove a valuable aid and I shall take advantage of every kind of help available when I need it, 'cos I'm slowly getting v tired.

Swollen legs . . . and panic . . .

Stephen panicked last night - the first time since he was taken ill. He is usually very positive, but last night his legs were playing him up - felt heavy and tight, and were weeping in places. They had swelled up considerably during the day in spite of frusemide (water tablets) - elastic stockings, massage and having his legs well supported above body level.

He cannot wear shoes and resorts to large old-fashioned slippers with felcro fastenings, as his feet are swollen out of all recognition.

Stephen shouted and raged against the illness for half the night - which I have now learned to ignore. I feel dreadfully sorry for him but realise he needs an outlet to get rid of the angst and bitterness. It' s difficult at times, but am determined not to play the martyr, and aim to be as loving and helpful as possible, given the cirumstances.

I rang the 'oedema' nurse at the hospice this morning and she will be in touch this afternoon.

I am hoping she will show me what to do as I don't think my massage techniques are helping the problem. I'm a bit 'rough' - which is OK for breadmaking - kneading dough - but not appropriate for a patient with very tender swollen legs.

NB: If you smoke or drink heavily I suggest you stop immediately. The information I give on this blog is only half the tale. Your future, and that of your family, will NOT be bright!

Home from the Hospice . . .

Stephen wanted to come home so I collected him from the hospice late this afternoon - since when he slept, but woke at 9 o clock wanting sponge pudding and custard, which I duly made for him. Luckily I had made a big welcome home marmalade cake, using some of the marmalade I made on Sunday. Warmed it up and made some custard - so it was no big deal. He enjoyed it and ate the lot!

He's tucked up in bed which I made extra comfortable by putting 2 duvets on top of the mattress. He is getting very thin and bony - so the extra cushioning will hopefully prevent bed sores developing. Tight elastic stockings to help reduce the swelling in his legs are worn during the day, and his legs have to be massaged (upwards) every morning.

Stephen was measured for a stairlift this morning - which should make life a bit easier as he has great difficulty crawling up the stairs and is determined not to have a bed downstairs. Feels that is below his dignity and the last straw.

I feel tired myself after running around all evening seeing to things - making sure he is comfortable. The doctor says Stephen can be admitted to the hospice at any time - but Stephen feels he wants to spend time at home - which I understand - but just hope my energy holds out. There is only me here to see to everything, whereas there were helpers, cleaners, nurses, doctors seeing to all his needs in the hospice, and alas I am no longer a 'Spring Chicken' but more like an 'Old Boiler!'