Where have I been?

Last published September 7th....................... I know, I should be ashamed of myself. I, like so many others, seemed to have found myself in one of those 'looking for something new' situations. My life, since my wife returned from the hospital, has settled into an easily managed routine. The only addition to our needs has come from a neighbour who's husband has had a major bowel operation. I've been taking her shopping twice a week, and lending her an ear, oh boy, have I been lending an ear!

I'm accepting that probably now is the best that it will get with Cag's situation. Not quite in the 'last stages' of M.S but any setback now could be very serious. I don't think she has the strength to fight anymore. She has not given up and will not give up, but there is only so much a person can take. Perhaps the next dealer will bring more luck.

I've set myself a challenge. To cook with a Remoska. ( I can hear the question from here! Try Google). I've known about them for years and recently a few neighbours have 'invested' in them, with varied results. Most swear by them. Another used it once, blew the fuse, and plunged his home into darkness. He over filled it, it boiled over, and he has been afraid to use it since.

I mentioned that I was interested in one and he gladly offered me the whole kit, with two unused recipe books, for well under half price. I reluctantly agreed. I've taken it to bits, checked it over, and now it's ready to go............................... and after a weekend of scanning the Net, I will be too.

I find myself in the same situation as many single and elderly people, now that I only have to look to my own needs for food. I have a good breakfast, but I only have main meal during the day, around 6.30pm. I've been through the packets, the tins and the prepared meals over the last few months. Now I need to stretch myself, and get back to the joy I used to find in cooking. I look forward to it.

Note. Must watch Jamie Oliver next week.

Nearly a week.........

It's been nearly a week since I last posted, a week of ups and downs. Generally, we are both fine, but that's not to say there haven't been problems.

The main difficulty this week has been Cag coughing about two thirds into her feed, around five in the morning (I feed Cag over night). I thought it may have been due to the different formula, one that she had tried in hospital, upsetting her, but I am now of the opinion that a ten hour feed may be too long.

I split the feed last night. I had to stop the feed around 700mls, flushed, then let Cag sleep for a couple of hours, and restarted the feed around 8am for a further two hours. That still left about 100ml short but I put that in manually with a syringe later. It seems to work, but I will check it out with the dietitian first thing in the morning, just to make sure it's O.K.

We had a visit from the PEG nurse this week. It was her first time in the area, so she was late, not being able to find us. She told, and showed me all the things I should have been instructed in while Cag was in hospital, so I'm a lot more confident in the whole system now, providing we can get this coughing sorted out.

Wednesday saw a visit from the outlaws, two of Cag's sisters. They came baring gifts, red wine and sticky coffee cake............ the perfect combination............ well I thought so! They hadn't seen her since she left hospital and were full of praise about how well she looked. Her skin is so much clearer and her hair shines, but not with hospital gained grease. Her colour is also very much better, with even a little rosiness in her cheeks. It's wonderful what a couple pints of beige soup and H2O can achieve. Wonder If Gordon Ramsey knows?

As for the rest of the problems, the pressure sores are on the mend, and I think I am going to have to accept that the limbs are never going to be as they were. We must make the best of what we have.

Sleeping on two feet..........

I've been expecting all sorts of verbal chastisement for my failure to post since August 22nd. No excuses, I've been about, but have had very little to say about the last couple of weeks.

We've settled into a rather confused routine. Confused for me because doesn't seem to fit my body clock, and confused for Cag because she really doesn't know what is happening at times.

I am disappointed about the physical condition Cag was sent home in from the hospital. The retraction in her limbs is causing problems with lifting and shifting. Hopefully a little bending and stretching will gradually put this right over the next few weeks. Cag is also suffering some skin deterioration around the base of the spine. Not quite pressure sores, but could easily become so if not treated. Hence the sleeping on two feet.

Our Community Nurse has supplied an inflatable pressure mattress for Cag, which takes up over half the bed, and the 'two feet' is all that is left for me. It's back to dressings three times a week, but I feel happier having the closer contact with the nurses, especially in these early days.

Everything else seems to be working out O.K. Cag's put on a little weight, about 2lbs in the last week, and that's fine. The feed has to be adjusted. A little too much fibre, if you get my meaning, but that's very much trial and error. Apart from that, she's looking fine. Hair shinning and skin clear, with a good colour. Must be the beige soup.

One of my neighbours did leave me speechless a day or two ago. I mentioned about the beige soup that Cag was on, to which he replied that I must be saving a fortune, not having to buy food by getting it by prescription!

Friday...............

I can't believe it's Friday already. Some parts of the week have really dragged, while at other times it's just flown by. The good news is that everything came together today.

The PEG nurse had phoned the next morning to make sure I was happy to do the feeds on my own. Today the dietitian called, to fill in a few gaps and to answer a couple of questions I had dropped on the PEG nurse. At least they talk to each other.

The food suppliers phoned and have arranged to deliver a months supply of the 'beige chemical soup' on Wednesday of next week. Finally, Tina, one of the community nurses asked if she could drop in on us to sort out what was needed from them and what back up they would be able to supply. She had been visiting my cousin, who lives two doors away, so it was a case of killing two 'old birds' with one stone.

I felt a lot happier after seeing Tina. She's known Cag for over five years and doesn't have to ask the questions that other would ask. She checked her out physically and told me what I must work on as far as physio is concerned, and what other problems to watch out for. So the future looks a little more rosy than it did a day or two ago.

It very much depends on Cag, and just how much effort she can and will put into her own recovery. It's not been a great deal in the past, but she is at a stage where choices soon will be taken out of her hands, and there will be no way back. I will do my bit. What else is there for me to do? At least I know there are others who can help.

On a happier note, I'm going to win £14 million tomorrow.................. well at least I've bought a ticket!

Home......... at last.

It should have been yesterday. The discharge had been approved by the doctors after their morning round. Everything that could be achieved in hospital had been done. It was now a case of regular feeding and encouragement to eat a little by mouth.

A Monday morning is not the best time to try to arrange all that was needed, and as some of the equipment would not be there until later in the afternoon, so I was asked to collect Cag at eleven o'clock this morning. She would be dressed and ready................ and she was.

I was expecting a change in Cag, and of course there is. She's not so mentally alert or as physically strong as she was. Five weeks of doing nothing has taken it's toll. It's now up to me, us, to work with what we have and try for some improvement. Not an easy task with M.S.

I did feel sorry for her travelling home. I was sure there had been 'an accident'. One has a nose for this sort of thing. Sure enough, the hospital sent her home with a little surprise for me. I'm pretty sure she had been dosed with Senna, probably last night. It's not the first time I have heard of this. Of course, she wouldn't know. It's so easy to do through the PEG......... but a little warning would have been appreciated.

I've just finished setting up the over night feed. I've made about all the mistakes it was possible to make, but thankfully I did it here and not when 'the eyes' were on me. Cag is still a little confused, and still can't quite believe she is home. I see her glancing around, just making sure she is where she wants to be. Now the work begins, the physical and the mental.

Beats working for a living!

Wednesday the 13th............

Thirteen, unlucky for some, but not us thank goodness. Cag has had the PEG fitted and all went well, very well. It really is a neat job, a small white plastic clip with the feeding tube running from it. Long enough so as not to be felt when the connection is made but easy to gather up when not in use.

Today, Thursday, Cag was very 'out of it'. It might have been a reaction to the operation but I'm guessing that the stay in hospital has treated her mind less well than I had hoped for. I saw the doctor about my fears and she thinks that she will probably recover her spirit after a few days at home, but I have doubts.

The Staff Nurse arrived, just before I was due to leave, and asked me to watch how the feed was prepared and administered. It took minutes. A machine delivers the feed, the correct amount, over a given time, usually done at night, so the recipient doesn't even know that the feed is taking place. Easy! I had asked Cag earlier if she had received anything via the PEG during the day, and she said she hadn't. The charts showed a different story, so she hadn't even realised she had been fed.

It's my turn tomorrow, with the nurse standing by and giving instructions. The next day it will be totally my turn, with all eyes on how I do, and if that satisfies the eyes, Cag may be allowed home on Monday.......... but if it's a day later or so, then that's O.K as well.

I understand it can be used for wine. Might even ask if I can have one............. but I like to taste too much, so that wouldn't work. But seriously, it will take adjustments on both our parts. I know I can handle what life brings, and I only hope Cag can cope with what comes her way.

Horizon in sight?

For a Monday, it's been very positive. I was told last week that the PEG operation was down for this week. It was confirmed today. It will be tomorrow morning.

I saw the doctors this afternoon and signed the permission form on Cag's behalf. I did ask her once again is she was sure and she said that she wasn't, but there is no other option, and I did get her agreement finally. The doctor explained about the risks, the same as with any procedure, but really we have no other choice.

Providing everything goes well, she will be back on the Ward by 2 p.m. A few days for the PEG to settle down, to make sure it's working well, and then Cag can come home. Next Monday being the aim.

The rest of my visit was taken up with an interview with an Occupational Terrorist .......... I mean Therapist, who was checking if we needed any additional support when Cag gets home. Later we saw the Physio Therapist, who wanted to see how I managed to move Cag without the aid of a hoist. I lifted her out of bed, into her chair, and then a few minutes later returned her to the bed. No problem. I still doubt if she weighs more than 38 kilo, even with 4 weeks of feeding.

So now it's more waiting, but at least we have a date in sight, and something to look forward to. I still wonder what they will be sending home to me, but it's got to be better than the last four weeks. I'll keep you posted. X