The last few days John has not been too well at all- a bit confused- high temperature-I just sit with him- knit- hold his hand- go for machine tea.
He wakened up the other day- said " I am having a good time" then went back to sleep-he can still make me laugh.
Yesterday he made me cry- he was in pain while I was there- and the staff were working hard to get him comfortable- I felt very sad and helpless.
I told him I know he is tired had been through a heroic struggle and had probably had enough.
he said " that was wisdom" and yes he had had enough- I told him if he had to go- it was OK with me- that I understood and that I would be OK.I wanted to say' that 'because I always regretted not saying it to my Grandfather-- when he said he wanted to go- I said no- no-stay for your 90th birthday- but he was tired had had enough he wanted to be with "his Mary" I wish I had known to say Ok go in peace.
David is coming tomorrow from Hong Kong- he has not seen his dad since January- mainly because he has a new job in HK but also because Maureen his mum died in March so, early in the year he used up his holidays coming to see her and going to her funeral.
I have been making sure John is not too stimulated this weekend- I have been the only visitor- as he does not need to make an effort with me.
I am hoping he will have some energy for David- if only 10 minutes-a bit of quality time.
Johnny and Penny will meet him in London-and they will all travel by train from London to Liverpool- they should be at the hospice at 12 45. I will go at noon- and be there for the arrival- so we can all be together John his three children and me- then I will leave the three children with their dad- then Penny and Johnny will leave to go back to London- leaving David with his pa.
David will come here tomorrow night- I asked if he needs space or family with him- he would like Andrew Lucy Philip and I to have dinner with him- so that is what is happening.
Tuesday David will see John again- then leave his pa for the last time and travel to London then Hong Kong- poor David- such a difficult moment that will be.
Philip is staying over with me on Monday night- so we are both here if David needs us - to be with him at the hospice- after he leaves- or meet him at Lime Street for a coffee before he gets on the train or let him just slip away on his own.
A young friend picked me up from the hospice to-day and took me to Dobbies- where we had tea and cakes and I bought a Ponsietta - it was nice to be in a different space for a wee while.
So dear blog- that is all for now. time for a hot bath and some food.
Sunday, 30 November 2014
Wednesday, 26 November 2014
my health -today
Hello blog
I finally saw a good doctor to-day- Dr Pauline Pang.
She listened to me and took me seriously- I went straight from her to have a whole battery of blood tests done- tomorrow I will take a ( s) sample to the surgery-and within a few days I will go for an internal examination.
I am very grateful to her - yet her response gave me a fright. She says I should not have had diarrhoea all this time- so she is getting all the tests done to eliminate a lot of things- I go back on December 10th so I need to be patient now. She has booked me in for a double appointment.
I am completely shattered worn out and had enough-I wonder how long can I go on with life as it is now- completely suspended- waiting.
Johnny has been three time over the last week- one of the days we met with a humanist celebrant and a funeral director- very strange thing to do but as the family are so far flung- we need something in place for when the time comes.
The celebrant Bill Dawson is lovely sensitive kind and a good listener.The funeral director was awful- talked at for 20 minutes- no listening at all- wanted to show us pictures of coffins with no sensitivity at all-also talked about the recent funeral of a six month old baby- all totally wrong and makes us wonder how he keeps going- even looked scary all in black- he gave both Johnny and I the creeps.
Johnny and I then went to the hospice and John was not too good- the hits just keep on coming some days. I stayed a while then left Johnny to have some quality time with his dad.
Penny came on Saturday and spent the day with John ,and I went to the Christmas Market in Manchester with Philip-it was so nice to get away from Liverpool ,Ullet Road and Marie Curie.
I stayed over night with Philip and really enjoyed the evening meal, a glass of wine and a movie.
On Sunday morning I got a call to say John was not doing well- I felt awful that I was so far away- and guilty I had been having a nice few hours.
I got back to Liverpool and John was much weaker- had a temperature- and had a drip in.
I think it was mainly a reaction to the excitement of Penny's visit- but I know John would rather see people and pay price later because he told me that.
So it has been a tough time- the nice moments and short and the tough ones are long and I fear for my own health physical and mental too at times.
I have not been to see John to-day. Sarah went late morning and Kev went this afternoon- Andrew and Lucy might go this evening.
I really believe the hospital visits-- just being in that environment are getting to me-making me ill-it has been going on for such a long time-since 24th September -this year- and last year- three month of three hospitals - two years of hospital out patient visits- after this I hope I never have to see another hospital again EVER.
Now I wonder what is wrong with me- hopefully on 10/12 I will know what I have to know.
Somehow I have to keep going- getting out for my walks again- I miss my walks.
All shall be well
and all shall be well
and all manner of things shall be well.
I finally saw a good doctor to-day- Dr Pauline Pang.
She listened to me and took me seriously- I went straight from her to have a whole battery of blood tests done- tomorrow I will take a ( s) sample to the surgery-and within a few days I will go for an internal examination.
I am very grateful to her - yet her response gave me a fright. She says I should not have had diarrhoea all this time- so she is getting all the tests done to eliminate a lot of things- I go back on December 10th so I need to be patient now. She has booked me in for a double appointment.
I am completely shattered worn out and had enough-I wonder how long can I go on with life as it is now- completely suspended- waiting.
Johnny has been three time over the last week- one of the days we met with a humanist celebrant and a funeral director- very strange thing to do but as the family are so far flung- we need something in place for when the time comes.
The celebrant Bill Dawson is lovely sensitive kind and a good listener.The funeral director was awful- talked at for 20 minutes- no listening at all- wanted to show us pictures of coffins with no sensitivity at all-also talked about the recent funeral of a six month old baby- all totally wrong and makes us wonder how he keeps going- even looked scary all in black- he gave both Johnny and I the creeps.
Johnny and I then went to the hospice and John was not too good- the hits just keep on coming some days. I stayed a while then left Johnny to have some quality time with his dad.
Penny came on Saturday and spent the day with John ,and I went to the Christmas Market in Manchester with Philip-it was so nice to get away from Liverpool ,Ullet Road and Marie Curie.
I stayed over night with Philip and really enjoyed the evening meal, a glass of wine and a movie.
On Sunday morning I got a call to say John was not doing well- I felt awful that I was so far away- and guilty I had been having a nice few hours.
I got back to Liverpool and John was much weaker- had a temperature- and had a drip in.
I think it was mainly a reaction to the excitement of Penny's visit- but I know John would rather see people and pay price later because he told me that.
So it has been a tough time- the nice moments and short and the tough ones are long and I fear for my own health physical and mental too at times.
I have not been to see John to-day. Sarah went late morning and Kev went this afternoon- Andrew and Lucy might go this evening.
I really believe the hospital visits-- just being in that environment are getting to me-making me ill-it has been going on for such a long time-since 24th September -this year- and last year- three month of three hospitals - two years of hospital out patient visits- after this I hope I never have to see another hospital again EVER.
Now I wonder what is wrong with me- hopefully on 10/12 I will know what I have to know.
Somehow I have to keep going- getting out for my walks again- I miss my walks.
All shall be well
and all shall be well
and all manner of things shall be well.
Thursday, 13 November 2014
Terror to Calm - 13/11/14
Dear Blog
to-day I went to a meeting at Marie Curie with Andrew and Johnny- a meeting with the health care team who care for John.
I was not sure what to expect- felt quite nervous- in fact for the last few days have had terrible diarrhoea- which has left me shattered and very low physically and emotionally. I think this condition is closely connected with fear- and fear is around- fear about John- for me -for all the children for all who love John.
He has become much weaker- much less able to do things for himself. More confused.
The meeting was life enhancing- such a caring capable knowledgeable team who all have great regard for John some love him I would say.
I was put at ease very quickly the meeting was in one of the quiet rooms- not a conference room- we were all asked how we felt what were our thoughts our questions.
Gradually with great skill we were brought to realise that John is very unlikely to come home- I am glad to know John is happy in Marie Curie in fact has told me several times over the last 18 months that -that is where he would like to die.
He may have a few weeks or a few months - he is much weaker and needs intensive care now.
I simply could not manage to care for John here ,even with carers coming and going.
We were all surrounded with such love such support - and we cared a lot for each other too once the staff left and ended up with a group hug- I left the room feeling quite calm.
Quite a transformation form when I arrived.
John said a few things to me in the last 24 hours which helped me see he knows at some level that the end his near. One was that he wanted to go to Lynda McCartney this morning to shake Dr Hussein 's hand-the doctor who has been with him monthly since the beginning of this. I was very grateful to Marie Curie that they organised an ambulance and staff to take him there-what stars they are.John wanted to say his good-bye.Johnny was there with John he has been a constant in all this time-been to so many appointments at The Royal-Clatterbridge- and of course Marie Curie
John said that he knew when it was time to give up the fight- and be peaceful -and that time was now. I am full of admiration that he was able to recognise this and grateful that he has lived long enough to have reached this stage.
I think it is a blessing.
Andrew asked what we could expect now -what changes might we see in John.I am happy to say dear blog- John will feel more tired,sleep more, eat less, and then the last day will come there will be no distress -what more can we ask for John.
I feel at peace for now-I can see a way forward from here- to be peaceful with John ,let him know I am ok I will be ok -all shall be well-and all shall be well - and all manner of things shall be well.
Grateful thanks to all who helped John and I to reach this place - for tonight at least- and tonight is all we have.
to-day I went to a meeting at Marie Curie with Andrew and Johnny- a meeting with the health care team who care for John.
I was not sure what to expect- felt quite nervous- in fact for the last few days have had terrible diarrhoea- which has left me shattered and very low physically and emotionally. I think this condition is closely connected with fear- and fear is around- fear about John- for me -for all the children for all who love John.
He has become much weaker- much less able to do things for himself. More confused.
The meeting was life enhancing- such a caring capable knowledgeable team who all have great regard for John some love him I would say.
I was put at ease very quickly the meeting was in one of the quiet rooms- not a conference room- we were all asked how we felt what were our thoughts our questions.
Gradually with great skill we were brought to realise that John is very unlikely to come home- I am glad to know John is happy in Marie Curie in fact has told me several times over the last 18 months that -that is where he would like to die.
He may have a few weeks or a few months - he is much weaker and needs intensive care now.
I simply could not manage to care for John here ,even with carers coming and going.
We were all surrounded with such love such support - and we cared a lot for each other too once the staff left and ended up with a group hug- I left the room feeling quite calm.
Quite a transformation form when I arrived.
John said a few things to me in the last 24 hours which helped me see he knows at some level that the end his near. One was that he wanted to go to Lynda McCartney this morning to shake Dr Hussein 's hand-the doctor who has been with him monthly since the beginning of this. I was very grateful to Marie Curie that they organised an ambulance and staff to take him there-what stars they are.John wanted to say his good-bye.Johnny was there with John he has been a constant in all this time-been to so many appointments at The Royal-Clatterbridge- and of course Marie Curie
John said that he knew when it was time to give up the fight- and be peaceful -and that time was now. I am full of admiration that he was able to recognise this and grateful that he has lived long enough to have reached this stage.
I think it is a blessing.
Andrew asked what we could expect now -what changes might we see in John.I am happy to say dear blog- John will feel more tired,sleep more, eat less, and then the last day will come there will be no distress -what more can we ask for John.
I feel at peace for now-I can see a way forward from here- to be peaceful with John ,let him know I am ok I will be ok -all shall be well-and all shall be well - and all manner of things shall be well.
Grateful thanks to all who helped John and I to reach this place - for tonight at least- and tonight is all we have.
Sunday, 2 November 2014
November 2nd- sunshine to-day- reflecting on the last few days.
We had a lovely day with John yesterday- Philip and I - John was in great form drank some wine with Philip had some bread and cheese with olive oil.Started a crossword-all good stuff- I think we all felt uplifted. Friday I spent the afternoon with John it was out 27th wedding anniversary- we looked at our wedding photos as did some nurses-celebrated with tea and blue riband biscuits.
I really enjoyed celebrating our anniversary and Halloween-with the children - they brought us lovely thoughtful gifts from Hong Kong - I especially like the serene Buddha and the golden cat- between them they will bring us prosperity- serenity and happiness.
Philip brought Lillies and sparkly- I bought scary masks- and put lovely Halloween decorations around the place. Looked great. I enjoyed the food and the wine- the medicine is kicking in and I am feeling a lot better.
So to-day was a shock- John was very lost and distressed when I got there. We had a big hug then I rang for a nurse to help John in the end they needed there people to help John get to the loo- then he was shattered and just slept for a good hour.
They were worried about him and called the doctor- she was very kind- Clare her name is.
They have started John on an antibiotic- maybe the chest infection is causing his sleepiness- maybe not- the next 48hours will help them decide what is going on.
I felt very upset when John was upset- but mostly I sat peacefully with John hoping to be a benign influence on him.
I left- and John was quite peaceful although it took me an hour to get him prepared for me leaving.
I am home now- spoke to Andrew-shared some of my tension I think all the tears are a combination of grief and the relief of tension after being in the hospice for a long afternoon.
I am about to have a hot candlelit fairy light lit bath.
Tomorrow is another day !
All shall be well
and all shall be well
and all manner of things shall be well.
Bless my circumstances as they are now.
Bless my family tonight
Bless John tonight
Blessing on my home and my family tonight.
I really enjoyed celebrating our anniversary and Halloween-with the children - they brought us lovely thoughtful gifts from Hong Kong - I especially like the serene Buddha and the golden cat- between them they will bring us prosperity- serenity and happiness.
Philip brought Lillies and sparkly- I bought scary masks- and put lovely Halloween decorations around the place. Looked great. I enjoyed the food and the wine- the medicine is kicking in and I am feeling a lot better.
So to-day was a shock- John was very lost and distressed when I got there. We had a big hug then I rang for a nurse to help John in the end they needed there people to help John get to the loo- then he was shattered and just slept for a good hour.
They were worried about him and called the doctor- she was very kind- Clare her name is.
They have started John on an antibiotic- maybe the chest infection is causing his sleepiness- maybe not- the next 48hours will help them decide what is going on.
I felt very upset when John was upset- but mostly I sat peacefully with John hoping to be a benign influence on him.
I left- and John was quite peaceful although it took me an hour to get him prepared for me leaving.
I am home now- spoke to Andrew-shared some of my tension I think all the tears are a combination of grief and the relief of tension after being in the hospice for a long afternoon.
I am about to have a hot candlelit fairy light lit bath.
Tomorrow is another day !
All shall be well
and all shall be well
and all manner of things shall be well.
Bless my circumstances as they are now.
Bless my family tonight
Bless John tonight
Blessing on my home and my family tonight.
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