The sad news...............

Just to let you know some very sad news about Cag.

She passed peacefully away on Thursday 20th November at about 9.45pm. She had endured a very difficult year, culminating with a massive M.S related seizure about three weeks ago. She never really recovered from this and has steadily declined since then. She was well cared for at home with the help of the MacMillan Service and the Community Nurses. She was unaware of her serious condition and slept quietly away while I was holding her.

Sorry to have to be the barer of such bad news but I thought you would want to know.

My very best wishes,

.............................. I thought this was the best way to let friends know, so I've copied the email for you all to see. I'm having a little time for myself over the next couple of days and will have to get back to the reality of life next week. Should be interesting.

The third week.....

Is it really the third week? It seems like only a few days since Cag returned from hospital........ or a life time. The new week saw the turning point, from a little recognition, to coma. Monday, perhaps a little smile, but nothing since. Her breathing is fast and shallow, hesitant at times, then starting again. There can't be much longer to wait. I pray not.

The Liverpool Care Pathway sucks. It was designed to maintain a level of hospice care within the home. It seems to me to fulfill all that is required by the law, but lacks the true compassion to the patient. I watch the golden liquid of life draining into a bag at the bottom of the bed, see all the body mass disappearing, to leave bones draped in it's covering of skin. Not much dignity in that.

Strangely, I'm finding it a little easier to deal with. Perhaps it's the anger or perhaps it's seeing others dealing with their grief. Like the families of the fallen watching their loved ones coming home from war. It's certainly brought new thoughts of 'tears and handkerchiefs' home to me.

I am thinking about the future. Making a few tentative plans. A little 'me' time to find out who I am, and if I'm the same person I thought I was. I shall start to make inquiries tomorrow about possible income, as everything has been based around Cag's situation. I've bought a small car, as our five week old Motability car will have to be returned, and Cornwall without a car is not an option. So a few blocks are being put in place.

I'm dreading 'the arrangements' but simplicity will be the order of the day. Neither of us would want black horses or long faces. It just one more day. One broken spoke on the wheel of life.

The Final Countdown............

The Final Countdown.................

The MacMillan nurse call on Wednesday. Dawn, her name, the start of a new day, or the bringer of tidings? She was very Totnessy, and if you know the town of Totnes in Devon, you would know what I mean. All cargo pants, tie-dye top, nose stud and hand made multi coloured shoes............. but a very nice lady. She did not pull any punches. She explained the situations and possible ways forward, but the end result was the same.

Today, Thursday, and I collected the necessary medication from the chemist. It's called The Liverpool Pathway. I shall pity the poor people of Liverpool for ever more. The nurse that came this afternoon was a little confused, but had all the necessary equipment and so set the wheels in motion, after my full agreement. Soon after she had started the doctor arrived, approved of my decision and said that he would be in touch later.

It was only when the MacMillan nurse phone, to see if I had collected the medication, that we found we had 'jumped the gun', and that the final countdown wasn't due to start until after the weekend ................ but it doesn't matter. There are no other options. Today, tomorrow, next week, the outcome will be the same, and I'm only too pleased to get this part of the terrible journey over with.

Tonight I stop the feeding and the liquid intake, so the term "It's just a matter of time" will then have it's true meaning. It's one of Cag's sisters birthdays, the 50th, on Monday. I do hope we don't spoil the day for her.

"And I dance, on the brink of an unknown future, to an echo from a vanishing past".

Into week two........

Into week two, and spent the day pacing. After washing and changing Cag in the morning, there's very little to do except sit and watch. The weather has been dreadful, so even a walk around the garden wasn't possible. Cag's had a couple of choking episodes today, unable to clear her throat, stopping her breathing.............. frightening........... for both of us.

Our daughter and granddaughter came down on Saturday. It was a good day, and Cag managed a smile. She's been asleep since then, eyes open only briefly, but there's nothing there.

There was a meeting at the Surgery today, to discus the way forward with Cag's care.I will probably hear all when the nurse calls tomorrow morning. Dawn, a MacMillan nurse phoned this afternoon. She's calling on Wednesday afternoon. She said she would be waring a badge and a smile. "Anything else?" I asked.

I've heard they will be arranging for certain medications to be available here at home. To save them rushing around looking for things if needed. I can guess what it will be, but if Cag's breathing deteriorates too much, I can see hospice care being suggested. It's only five minutes away. Wonder what the rest of the week will bring.

Me? I'm O.K. Lumpy throat at times, annoyed I can't do more, wondering about the future, trying to keep busy, all sorts of emotions. Dreading some of the plans I will have to make............. but I'm O.K.......... ish.

The doctor cometh..........

First let me thank those of you who commented on yesterdays post. I was more switched on when the doctor call today, so was able to come away with a little more positive news.

He answered all the general medical questions I asked, mainly about her care and what to watch for. I asked about a time scale and he replied that whatever he told me would be wrong. There were many possibilities. Because the body is not acting in the way it should, it will gradually shut down. This could be hastened by and infection or breathing difficulties, pneumonia etc, and of course, there was always the possibility of another seizure. It also depends on the will to survive or whether the body is just too tired to fight anymore.

In the mean time, we will make her as comfortable as we can and try to keep her mind as active as we can. A day at a time, and every day a blessing.

I will make my own enquiries about our local hospice. I used to be in contact with several of the nurses there as Cag attended their Day Care Centre for physio, but that was a about ten years ago. I have heard only glowing reports recently, but it has to be right for Cag, and offer more than I can give her here. I know that if I need a break, the door is open, and I only have to let our doctor or the nurses know. We shall see.

The end game...........

It's been a difficult week. I tried to write a post on Monday, but I could only manage a few words, and they didn't seem to make any sense.

Monday was a busy day. The phone was indeed red hot, but it all revolved around the visit of our doctor. I think even he was shocked when he saw Cag. He had the treatment information from the hospital and brief details of what had happened. He made me go over exactly what had happened when the paramedic was here, and was truly troubled when I told him the amount of time Cag had remained fitting, well over an hour.

Bottom line is that this is the 'end game'. Well into the fourth quarter with no 'time outs' remaining. The doctor said he would arrange for anything I wanted. Whether Cag was to go into hospice care or remain here, with me looking after her, and daily visits from nurses. I am happy with the second choice. It's really very little more than I have been doing for months, and with the extra help, I'm sure I can do what is needed.

The offer of hospice care will be always there, should things become too difficult, or if I were to need a few days respite for myself. I can see where this would be of use, especially if this more intensive care was needed long term.

The doctor is returning tomorrow or Friday, and I have a small list of questions for him. In the mean time, the nurses are calling and have been helpful, especially in oral hygiene, something that seems to be sadly lacking in hospitals. We've arranged bed changing for Friday, and sex on Mondays and Thursdays........................ only joking.

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Three of Cag's sisters came down for a visit today. It's her birthday on Friday. They came loaded with cards, flowers and good wishes for both of us. They managed only a few minutes with her and all left the bedroom in tears. I don't think Cag would have noticed very much as she has spent nearly all day asleep.

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I was really dreading it but managed to keep my control ..............well, most of the time. Our daughter phoned tonight. She and granddaughter will make the journey on Saturday. Another lumpy throat day to look forward to, but it is getting easier.

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The real thing that annoys me is that I have had fifteen years to work out how to play this chapter, and thought I had covered all eventualities, but I could not allow for the weight of sadness that I've felt the last few days.

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..........)(..........

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So, America has made it's choice, a right one I think.

Now keep him alive.

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Home............

An ambulance brought Cag home on Friday evening. It was their last drop and by then she was pretty exhausted. I did no more than change her, get her comfortable, then see to her liquid intake and later her feed. Everything else could wait until the next day.

Saturday brought with it the full realisation of her condition. Physically there is very little change, except that there is practically no flexibility in her arms, and they are trapped across her chest. She has managed one or two words but that soon became just a nod or a shake. The medication she is on seems to make her sleep most of the time, so perhaps this is a blessing. A Community Nurse called in the afternoon, to check on pressure sores, but she is very new to the job and did only what I asked her to do. She did say for me to contact our doctor for a visit on Monday, but that was already on my list of 'Must Do'.

I phoned a friend today, Sunday, a fellow M.S carer. Her husband is in a similar situation to Cag, and she confirmed that I must contact our doctor, the team leader of the nurses, and my own care coordinator, to set wheels in motion A.S.A.P.

I know I shall probably need some help, either that or grow another set of arms, because there is just not enough of me physically to do all that needs to be done. I can wash and change, do all the other little things which are needed during the day, but hair washing, bed changing etc, is going to need two people.

So it's a busy day tomorrow. The phone will be red hot. I've not been left with much, but what I have will be loved and cared for, for as long as necessary.

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I'm sorry I'm not visiting my usual Blogs at the moment, but I'm sure all will understand.
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