A Mixed Weekend..............

There's been a little change in our situation. A step forward, one back, then a little shuffle forward again. I managed to see the dietitian, and the consultant on Friday. The dietitian said that they would continue what they were doing in the way of feeding until after the weekend, then start to increase the intake a little at a time. The consultant was positive, but said that progress would be slow. We can live with that.

Saturday brought a surprise. Cag had managed to pull out her feeding tube over night. She was a little brighter but still very pale. The nurses were doing hourly feeds, with small amounts fortified desserts and thickened shakes, rather than replacing the tube right away. Cag was managing but I could see she was not happy. Her hands were very swollen, but that was due to the re hydration, and it should right itself as soon as she recovers a little more.

I really didn't know what to expect today. I wasn't surprised to see the feeding tube had been replaced. I understand there was quite a bit of coercion but finally Cag agreed. She was waiting for an X-ray to make sure the tube was in the right place before they could start feeding, and was still taking small amounts of food orally. I even managed tempt her with some soft chocolate.

She's bored and complaining, so I know she is a little better. And spending money! Strange how a woman can be very ill, in hospital, and still spend money. So hopefully the progress may not be as slow as the 'powers that be' thought. You know what retail therapy can achieve. We can but hope.

Shape of things to come...........

It was the first day of visiting now Cag has been settled and is out of the admissions ward. It was a bit of a shock. She really looks very poorly. She was asleep when I arrived, head to one side, tubes and drips, and looking very pale.

She did brighten up when she knew I was there but soon drifted back into sleep again. The speech therapist arrived later and woke her to do a swallowing test. She managed but only just. Later on, a young girl, who said she was a doctor, came to take blood. She asked about Cag's history, medication she was on, and generally how she coped with life. She seemed to know a lot more than her years, but admitted she knew very little about M.S. She did say that it was going to be a long job, so not to expect very much, at least in the short term.

It seems the information I was given yesterday about it taking about three weeks may have been optimistic to say the least. I did my usual rounds of phoning the family when I arrived home, to pass on what little more news I could. They have all offered to come and visit, but there is little point as yet until the re hydration and feeding have had some chance to work. Hopefully soon, very soon.

And now a thought for the day. A woman should always marry an archaeologist. The older she gets, the more interested he becomes. Are there any women archaeologist out there? ;-)

The bad news and the bad news....

Cag was admitted to hospital last night. She had a difficult day, and had a couple of bouts of not being able to clear her chest, coughing, almost choking. I was not happy about her situation so called the emergency doctor. He checked her over and phoned for an ambulance, saying that she ought to be looked at in hospital, the sooner the better.

I phoned this morning to find out how she was and was asked to go to the hospital to meet with the doctor, as she was refusing medical intervention. I was there by 10.30am but was unable to see the doctor until about 2pm, because of other emergencies. It gave me time to work on Cag and to get her to agree to accept examination and treatment. All she wanted to do was to come home, but if she does she will die, pure and simple.

She is now on a drip and has a feeding tube fitted, and I heard tonight that she has taken a small amount of nourishment this way. I talked with the dietitian before I left this evening and she asked me how heavy Cag was. I knew because I had weighed her on Sunday............ 32 kilos, about 5 stone. She did warn me that this was borderline and that feeding would have to be small and often. It may take three weeks or more to see an improvement, but at least something is being done ........ at last.

Cag is not the best patient. She is hating every minute of it, but I know I have done all I can here and she needs the sort of help the she can only receive where she is. I can't help feeling guilty at allowing her to go into hospital, but the alternative is unthinkable.

I wonder what tomorrow will bring?

I'll get back to you..........

"I'll get back to you........." Oh how I hate those words, because it usually means you'll be hanging on and waiting for a telephone call that may never come. That's what the week has been like for me.

Yesterday, I'd had enough. Cag's eating problem has not been improving, no matter how hard we try, and we DO try. It's now a case of just a couple of spoon fulls of mousse, or sips of coffee, will set her choking, then urging, and then of course, she won't take any more. Her total daily intake of calories must be under 200 and liquid consumption below a pint. This situation can not go on. I phoned the doctor's receptionist and demanded a visit.

I was hoping for something a little more positive but there has been, perhaps, a little progress. The 'practice matron' called to see Carole. (Where do they get these names?) Needless to say, the name was Chris and HE was a tiny bit gay.

He arrived 45 minutes late, just as I was about to get Cag back to bed. She had been up an hour and was failing fast. He was one of these ........ "How are you feeling"................. leaning forward............... " how are you REALLY feeling?" type of people. To which Cag answered "Fine!"

He checked out her swallowing and he said that he thought it was o.k. Then he generally questioned her about how she felt about food, wanting to eat or not. Checked her for depression, cup half full or half empty sort of questions, then asked her directly if she felt depressed. Of course she said "No".

He brought with him a selection of high calorie drinks and mousse style deserts for her to try. She said she would try, and I said I would encourage her....... but I'm not holding my breath.

He's made arrangements to call again next Thursday, along with a speech therapist ( she's into swallowing and breathing techniques ), who he thinks may be able to help. I'm not very impressed with the idea, but we shall see.

So now it depends on Cag, how much she wants to do. Wish I was more excited about the prospects, but I can only do what she will let me. More waiting, more worrying.



Never mind. My new gin and tonic diet is working great. I've lost four days this week.

Great tits............

At last, the children have come to the table. Our little feathered friend have brought along their offspring to show them where to get food, and what to do with it. Last year it was the robins and dunnocks, but it was the great tits, followed by their smaller cousins, that graced our bird table first.

.

.

A young blackbird took up position this afternoon and tried to keep the table as his sole domain. It showed no fear even when I went in close with the camera.

.

...........................................

.

I was expecting another phone call from the doctor this afternoon, but it didn't happen. I had managed to get in contact with the M.S nurse to discuss the best way forward for Cag. I was under the impression, as was the doctor, that she would be able to make a home visit, but this is not the case. She has nearly 700 people with M.S on her books and the only way she physically can be of help to them is by running a clinic at the County Hospital. If she were to make house calls she would only be able to help a small number, much smaller than if the person was to visit her.

.

She is having an assistant appointed, who will be able to cover the home calls but that won't be for several weeks. We will be on her list. The nurse was going to contact our doctor with this information, so I thought he may have called........ silly me!

.

We did discuss Cag's situation and she is of the same opinion, that the problem, although M.S related, is being caused by depression. She suggested I go back to the doctor and for him to visit to check things over with this in mind.

.

Cag has asked me to belay that for a few more days to see if she can shake the feeling herself, but there was not a lot of progress if today was anything to go by.............. but we shall keep trying.

A reminder.......

I've been reminded that I haven't posted for quite a while. Well, I've been here, reading and searching but not really in the mood to put my thinking head on. I've put up a couple of entries on my other blogs, simple things, but my mind has been elsewhere.

Cags condition is causing a lot of concern. She's not eating enough, three to four hundred calories a day, and her liquid intake has dropped to a little over a pint. We've been waiting all week for a contact from the M.S nurse, even phoning the doctor again on Wednesday, getting him to re-fax information to her office. If there is no contact by Monday afternoon I will have to rattle some cages.

I'm not sure it's all to do with M.S. She has been very down recently. It usually happens at this time of the year, but there's no reason you can put forward for why. She has got swallowing problems, and has difficulty chewing, but I don't think these are the only reasons. I can see the need for a liquid food diet and even the possibility of tube feeding at some time, but hopefully not quite yet.

I half know what the nurses suggestion will be, high calorie booster drinks. Thick syrupy ill tasting things, that might look good on paper, for those who have never had to take them. Then will come the next problem, what will Cag take? She's always been picky what she eats, doesn't like this, or that, so there's going to be quite a challenge. Hates soup, hates milk, eggs, meat, gone off fish, vegetables, even chocolate. Quite a challenge!

Thing could be worse, I keep thinking of the situation if my mother had still been with us. I know I would have caved in under the strain. There is no way I could have gone through the operation and been able to look after two people. I'm finding my limitations, ones I thought I would never have.

I'm not a poetic person but...........

I found this little poem in my daily paper and it rather stuck a chord with me so I thought I would share it with you........

The Kiss

.

"What other men have dared, I dare,"

He said. "I'm daring too:

And tho' they told me to beware,

One kiss I'll take from you."

.

"Did I say one? Forgive me dear;

That was a grave mistake,

For when I've taken one, I fear,

One hundred more I'll take."

.

"Tis sweet one kiss from you to win,

But stop there? Oh no!

One kiss is only the begin;

There is no end you know."

.

The maiden arose from where she sat

And gently raised her head:

"No man has ever talked like that-

You may begin," she said.

.

Thomas Masson 1866-1934