Not so much a blog - more notes and thoughts
- Thread starter Nan2seven
- Start date
Dear Nan,
Just a quick line to say I'm keeping up with your news and am so relieved that Brian seems to be relatively settled and is receiving such a good level of care. I am so pleased with my mum's NH, so I know what a huge relief it is to know they're ticking all the boxes and seem to genuinely "care".
Hope can now take care too.
Lots of love,
Just a quick line to say I'm keeping up with your news and am so relieved that Brian seems to be relatively settled and is receiving such a good level of care. I am so pleased with my mum's NH, so I know what a huge relief it is to know they're ticking all the boxes and seem to genuinely "care".
Hope can now take care too.
Lots of love,
So were you married in 1960 if my maths is right nan? What a great time to marry, the swinging 60s. My parents married in 57 which was still quite an austere time after the war according to mum. But you must have had an exciting time.
How lovely he proposed to you again. It brought tears to my eyes! X
How lovely he proposed to you again. It brought tears to my eyes! X
Dear Annie and Pied, thank you for your posts.
Yes, Pied, we married in April 1960 and saved hard to be able to afford our first home: we managed to save a third of the cost of a newly-built bungalow in 18 months and then the boys came along in '64, '65 and '70. I have a very vivid memory of dancing around the pram in the hall, our first babe sitting up in it and ready to go shopping with me, but the Beach Boys came up on the radio, "I get around", and there was no way I was going to leave the house before that had finished playing .... Still love dancing - and so do all the boys.
Love, Nan XXX
Yes, Pied, we married in April 1960 and saved hard to be able to afford our first home: we managed to save a third of the cost of a newly-built bungalow in 18 months and then the boys came along in '64, '65 and '70. I have a very vivid memory of dancing around the pram in the hall, our first babe sitting up in it and ready to go shopping with me, but the Beach Boys came up on the radio, "I get around", and there was no way I was going to leave the house before that had finished playing .... Still love dancing - and so do all the boys.
Love, Nan XXX
Thank you, Helen.
Matthew rang from Paris this evening for an up-date and he agreed with the Head of Nursing at the CH that I must now get back into the stream of things, contact old friends, make further enquiries about some French Conversations classes I was thinking I might go to, and even go and visit him in Paris.
I am at long last thinking that these sort of things might be possible. But tomorrow morning I have to see the dentist for a check-up. Rang on Friday to say that it would not after all be a joint check-up as (voice going a bit wobbly at this point) "Brian has now gone into residential care and cannot come."
Have just realised I am falling asleep at the table here. Night-night.
Love, Nan XXX
Matthew rang from Paris this evening for an up-date and he agreed with the Head of Nursing at the CH that I must now get back into the stream of things, contact old friends, make further enquiries about some French Conversations classes I was thinking I might go to, and even go and visit him in Paris.
I am at long last thinking that these sort of things might be possible. But tomorrow morning I have to see the dentist for a check-up. Rang on Friday to say that it would not after all be a joint check-up as (voice going a bit wobbly at this point) "Brian has now gone into residential care and cannot come."
Have just realised I am falling asleep at the table here. Night-night.
Love, Nan XXX
It`s a contradiction in terms Nan.
You are still married but separated.
You will have time for yourself but not time you`d choose.
You will have freedom but to do what, and to do it alone.
You will be rested but still anxious.
Your caring responsibilities will be shared to lighten your load, but your heart will be heavy.
You will have time to get some life back for yourself but realize at times it`s a sham.
You will do what you have to.
You are still married but separated.
You will have time for yourself but not time you`d choose.
You will have freedom but to do what, and to do it alone.
You will be rested but still anxious.
Your caring responsibilities will be shared to lighten your load, but your heart will be heavy.
You will have time to get some life back for yourself but realize at times it`s a sham.
You will do what you have to.
What a lovely memory Nan, dancing round the pram to the Beach Boys! Your middle son was born the same year as me. I bet we both had tank tops. My mum used to knit them for me and my best friend had one the same!
I hope you have a good day today and can relax a bit more. I think you can expect to feel tired - when stress lessens it can leave exhaustion behind so take care of yourself! X
I hope you have a good day today and can relax a bit more. I think you can expect to feel tired - when stress lessens it can leave exhaustion behind so take care of yourself! X
Good morning, Pied - Actually, no, none of the boys ever wore a tank top! EVERYbody wore them, and that was good enough reason for me not to put my boys in one.
I have this "thing" (very mild) about not conforming when it comes to clothing: the scarves that everyone wears at the moment, for example, doubled with the two ends loosely threaded through the loop - I will not wear them. Fashion accessory. Out. I probably come across as a bit of an old fuddy-duddy. But of course prefer to think of myself as quietly rebelling ....
Love, Nan XXX
I have this "thing" (very mild) about not conforming when it comes to clothing: the scarves that everyone wears at the moment, for example, doubled with the two ends loosely threaded through the loop - I will not wear them. Fashion accessory. Out. I probably come across as a bit of an old fuddy-duddy. But of course prefer to think of myself as quietly rebelling ....
Love, Nan XXX
Dearest Sylvia,
What a profound and moving post.
Our situations are indeed full of contradictions.
Everyone is saying to me "Now you must get your life back on track", but I have over the last three years grown accustomed to doing things alone - when Brian was at the Day Centres and when sitters were here for two hours for his last two months at home.
If it were not for my beach hut, I would be lost. It is my home from home, all year round. I know and talk at length to many more people there than neighbours here at home.
For now, I am happy for each day to finish with two hours with Brian - and may or may not cut that down to every other day.
The Head of Nursing at this new care home asked me "Bearing in mind you have had some unfortunate experiences with previous care for Brian, how long will it take for you to trust us? And get back a little life of your own?" I answered that I simply didn't know, but liked what I had so far seen.
I enjoy other people's company, one-to-one, but am also very happy with just my own.
I talk now of "being able to do more" but in my heart of hearts actually wonder if I will bother.
Sylvia, I so admire you for having become one of the Moderators. That is such a commitment - and one I know I could not make. You have probably helped tens of thousands of people, members and visitors to this site. The word "sham" doesn't even come into it.
Thinking of you and sending love,
Nan XXX
What a profound and moving post.
Our situations are indeed full of contradictions.
Everyone is saying to me "Now you must get your life back on track", but I have over the last three years grown accustomed to doing things alone - when Brian was at the Day Centres and when sitters were here for two hours for his last two months at home.
If it were not for my beach hut, I would be lost. It is my home from home, all year round. I know and talk at length to many more people there than neighbours here at home.
For now, I am happy for each day to finish with two hours with Brian - and may or may not cut that down to every other day.
The Head of Nursing at this new care home asked me "Bearing in mind you have had some unfortunate experiences with previous care for Brian, how long will it take for you to trust us? And get back a little life of your own?" I answered that I simply didn't know, but liked what I had so far seen.
I enjoy other people's company, one-to-one, but am also very happy with just my own.
I talk now of "being able to do more" but in my heart of hearts actually wonder if I will bother.
Sylvia, I so admire you for having become one of the Moderators. That is such a commitment - and one I know I could not make. You have probably helped tens of thousands of people, members and visitors to this site. The word "sham" doesn't even come into it.
Thinking of you and sending love,
Nan XXX
Good morning Nan,
The home Brian is in sounds excellent, they seem to care about you as well.
Please don't rush into doing things, take your time, you will be in limbo at the moment after all the battling you have had to do.
Get your srength back mentally and physically and then start to plan your time. You have time now, not the way you would want it I'm sure, but you have the guts to come to terms with it.
I have nothing but admiration for the way you have coped.
Know what you mean about fashion. I've been wearing camouflague clothes for over 25 years, long before they became fashionable.
(58 now and still wearing it)
Take care
xxxannexxx
The home Brian is in sounds excellent, they seem to care about you as well.
Please don't rush into doing things, take your time, you will be in limbo at the moment after all the battling you have had to do.
Get your srength back mentally and physically and then start to plan your time. You have time now, not the way you would want it I'm sure, but you have the guts to come to terms with it.
I have nothing but admiration for the way you have coped.
Know what you mean about fashion. I've been wearing camouflague clothes for over 25 years, long before they became fashionable.
(58 now and still wearing it)
Take care
xxxannexxx
What a wise post from Sylvia, Nan. You must take your time but it's so good to hear the Head of Nursing has shown such compassion.
You will live with it I guess with as much serenity and dignity as Sylvia shows daily. Not the life you would choose.
I know what you mean about tank tops. I feel that way about headscarves, they seem a 'badge' of chemo to me (I know, I'm weird!) , but it's been so hot - I have succumbed to a cream silk scarf.
Love,
You will live with it I guess with as much serenity and dignity as Sylvia shows daily.
Not the life you would choose. I know what you mean about tank tops. I feel that way about headscarves, they seem a 'badge' of chemo to me (I know, I'm weird!
) , but it's been so hot - I have succumbed to a cream silk scarf.Love,
Dearest Pied - thank you for your post. Headscarves as the badge of chemo - yes, whenever I see someone wearing one, I want to say to them I hope the treatment's going well and that it is not making them feel too poorly, but something like that from a complete stranger would be too intrusive and perhaps upsetting. They might even resent it, but it would be said with all sincerity and love.
A cream headscarf sounds lovely, Pied. It HAS been incredibly hot, hasn't it. I hope you have been able to develop a bit of a tan to set it off, but perhaps you are a bit light-sensitive at the moment. Because of medications, Brian now has to be careful in the sun. Do hope you are able to enjoy a bit of sunshine now and then.
Sending love, Nan XXX
A cream headscarf sounds lovely, Pied. It HAS been incredibly hot, hasn't it. I hope you have been able to develop a bit of a tan to set it off, but perhaps you are a bit light-sensitive at the moment. Because of medications, Brian now has to be careful in the sun. Do hope you are able to enjoy a bit of sunshine now and then.
Sending love, Nan XXX
Tan? I got burnt to a frazzle !! Yes, I think it was the chemo that made me sensitive because I have a burnt stripe on my arm over the vein where the cannula goes. Hope it fades by Monday or I might get told off.
I wouldn't mind a stranger saying they hoped my treatment was going well. My friend said casually "I like your scarf, I like bandanas", and she sounded so affectionate I wanted to hug her. That's all you need sometimes, especially when you know you look a perfect fright!
I think the French classes sound fantastique, non? Vas-y!
xxxx
!! Yes, I think it was the chemo that made me sensitive because I have a burnt stripe on my arm over the vein where the cannula goes. Hope it fades by Monday or I might get told off. I wouldn't mind a stranger saying they hoped my treatment was going well. My friend said casually "I like your scarf, I like bandanas", and she sounded so affectionate I wanted to hug her. That's all you need sometimes, especially when you know you look a perfect fright!
I think the French classes sound fantastique, non? Vas-y!
xxxx
Thank you, Kassy, Annie and Pied.
Brian had his hair cut on Sunday morning - for the first time since January. It had got incredibly long, is very thick (and is still a deep shade of reddish-brown). Tomorrow morning they are going to give him a shower, which will be the first since he is no longer able to weight-bear or keep his balance. I do hope he enjoys it.
He was more awake to-day but seemed somehow less "in touch" with me, making not much eye contact. But perhaps I should be glad that he was more interested in what was going on around him in the lounge, other people's conversations - even if it was one little lady who kept saying that They had two of her coats and would not let her have one to keep herself warm. (I draped a crocheted blanket over her 'til one of the care assistants came back in.) Or someone else wanting to go home as she had not signed a contract to be there and did not want to stay. Or another lady (resident) who asked if it would be all right if she stayed the night but would go home tomorrow. (The Care Assistant assured her that that would be fine. They beamed at each other.)
When it was time to go, he had a pill still in his mouth from about 20 mins. earlier. Gave him another drink to swallow it down but he refused. Sat on with him for over five minutes but he still refused to swallow it and began to get a little cross at me when I asked him to swallow it down. Decided to get up and go rather than upset him further and went and told the Sister before I left. Perhaps he would do it for her, if not for me.
Pied, is that un terme d'argot? "Vas-y"? Does it mean "Go for it"? All my French is probably very old-fashioned. It was my best (and favourite) subject at school, but I took my GCE in 1956. Ye gods! That was 55 years ago.
Love, Nan XXX
Brian had his hair cut on Sunday morning - for the first time since January. It had got incredibly long, is very thick (and is still a deep shade of reddish-brown). Tomorrow morning they are going to give him a shower, which will be the first since he is no longer able to weight-bear or keep his balance. I do hope he enjoys it.
He was more awake to-day but seemed somehow less "in touch" with me, making not much eye contact. But perhaps I should be glad that he was more interested in what was going on around him in the lounge, other people's conversations - even if it was one little lady who kept saying that They had two of her coats and would not let her have one to keep herself warm. (I draped a crocheted blanket over her 'til one of the care assistants came back in.) Or someone else wanting to go home as she had not signed a contract to be there and did not want to stay. Or another lady (resident) who asked if it would be all right if she stayed the night but would go home tomorrow. (The Care Assistant assured her that that would be fine. They beamed at each other.)
When it was time to go, he had a pill still in his mouth from about 20 mins. earlier. Gave him another drink to swallow it down but he refused. Sat on with him for over five minutes but he still refused to swallow it and began to get a little cross at me when I asked him to swallow it down. Decided to get up and go rather than upset him further and went and told the Sister before I left. Perhaps he would do it for her, if not for me.
Pied, is that un terme d'argot? "Vas-y"? Does it mean "Go for it"? All my French is probably very old-fashioned. It was my best (and favourite) subject at school, but I took my GCE in 1956. Ye gods! That was 55 years ago.
Love, Nan XXX
I took mine in 1980 so not far behind you nan! Yes I think it means go on, go ahead , have a go!
X
X
Meds. and DNR
Brian has gradually come up out of his seizure of last week, but it is clear to me that he is not thinking as clearly as he was before he had it. For the last three days of visiting he has frowned at me as though he cannot quite place me. I have asked if all is well, is he in any pain at all, and he said he was fine.
The home offered to scan any photos we didn't have the negatives for if I wanted to put some in his room. At home we have always had our three favourite school photos of the boys displayed here in the lounge and yesterday I put scanned copies of them into frames for him and showed him each one in turn, before taking them to his room. He recognised the two older boys but thought the youngest was himself. He also thought a picture of him and me sitting side by side was a picture of him and our eldest.
And I'm pretty sure he thought I was his mother (I was feeding him his tea/supper) and he asked after his dad.
One of the lady residents occasionally gets going on an "I don't want to be here" stream of talk, and in amongst it are remarks like "You can't trust any of them - They're all murderers - We'll be murdered in our beds - Watch out for that one, she's lethal" and so on. All the other residents ignore her and I am so glad that Brian is partially deaf in one ear and doesn't catch most of what is being said. I would hate for him to absorb any of her confusion. He has problems enough watching the TV on occasions, thinking himself to have been shot when watching old cowboy films.
In an effort to lift his frown (and drown out what this particular resident was saying), I told him he was a dear, sweet and gentle man, which brought a real smile to his face. I got him to repeat it back to me, which he did, and in an effort to establish who I was, I added "and you're a delight to be married to." "Thank you" he said, and beamed at me, and puckered up for a kiss which was duly delivered. But again later I think he thought I was his mother ...
Our GP rang at lunchtime. The CH had asked that one of his meds. (one up to now always supplied by the hospital and for which I have always made a trip to the hospital pharmacy to collect) could now be supplied by the practice. I had told her that it never had been up to now. She put a note at the bottom of a prescription to request it and told me yesterday that they had agreed. To-day the GP said it couldn't be done and had to be prescribed by the Consultant. I said I had explained all of this to the CH. He said we'd have to go on doing it the same way.
He then went on to talk about DNR. He said he'd seen Brian last week and apart from having lost a bit of weight, he thought he looked reasonably well and with it. I was glad he said that because I said I was not altogether happy with the hospital having him down as DNR. I told him there were times when Brian still had completely lucid spells of up to twenty minutes or so when he is as he was prior to his stroke. I realised that there was a chance that the very next stroke or seizure he might have could take him down so far that the quality of his life would be very badly affected, but up to now I thought he was doing all right. "I absolutely agree" he said, "I'm about to ring the home now and I'll tell them we've discussed it together."
One of the Care Assistants told me this week that Brian had had a long chat with the young male CA and I had been so pleased to hear that. (That particular chap has not been in for two days, or I would have asked him what they talked about.) I am very aware that when I get to the home at the end of the afternoon, 5 p.m., to help with tea, sometimes Brian is quite tired by then. (The day before yesterday he had two ten-minute naps while actually eating - woke up refreshed and set off again.) He is perhaps a good bit more communicative during the day than I realise. I was told he had much enjoyed a music session one afternoon. When I asked him about it, he said "Ah, yes ..." but couldn't recall very much about it, other than he had enjoyed it.
So I am glad to have had a chance to talk about the DNR label with our GP, and for it to have been "removed" for now, and that our GP agreed with me.
The next seizure or stroke will come at some point because it is the nature of Brian's illness, a natural progression. And when it does, the severity of it will perhaps cause a re-think. But for now - my thanks to our GP.
Brian has gradually come up out of his seizure of last week, but it is clear to me that he is not thinking as clearly as he was before he had it. For the last three days of visiting he has frowned at me as though he cannot quite place me. I have asked if all is well, is he in any pain at all, and he said he was fine.
The home offered to scan any photos we didn't have the negatives for if I wanted to put some in his room. At home we have always had our three favourite school photos of the boys displayed here in the lounge and yesterday I put scanned copies of them into frames for him and showed him each one in turn, before taking them to his room. He recognised the two older boys but thought the youngest was himself. He also thought a picture of him and me sitting side by side was a picture of him and our eldest.
And I'm pretty sure he thought I was his mother (I was feeding him his tea/supper) and he asked after his dad.
One of the lady residents occasionally gets going on an "I don't want to be here" stream of talk, and in amongst it are remarks like "You can't trust any of them - They're all murderers - We'll be murdered in our beds - Watch out for that one, she's lethal" and so on. All the other residents ignore her and I am so glad that Brian is partially deaf in one ear and doesn't catch most of what is being said. I would hate for him to absorb any of her confusion. He has problems enough watching the TV on occasions, thinking himself to have been shot when watching old cowboy films.
In an effort to lift his frown (and drown out what this particular resident was saying), I told him he was a dear, sweet and gentle man, which brought a real smile to his face. I got him to repeat it back to me, which he did, and in an effort to establish who I was, I added "and you're a delight to be married to." "Thank you" he said, and beamed at me, and puckered up for a kiss which was duly delivered. But again later I think he thought I was his mother ...
Our GP rang at lunchtime. The CH had asked that one of his meds. (one up to now always supplied by the hospital and for which I have always made a trip to the hospital pharmacy to collect) could now be supplied by the practice. I had told her that it never had been up to now. She put a note at the bottom of a prescription to request it and told me yesterday that they had agreed. To-day the GP said it couldn't be done and had to be prescribed by the Consultant. I said I had explained all of this to the CH. He said we'd have to go on doing it the same way.
He then went on to talk about DNR. He said he'd seen Brian last week and apart from having lost a bit of weight, he thought he looked reasonably well and with it. I was glad he said that because I said I was not altogether happy with the hospital having him down as DNR. I told him there were times when Brian still had completely lucid spells of up to twenty minutes or so when he is as he was prior to his stroke. I realised that there was a chance that the very next stroke or seizure he might have could take him down so far that the quality of his life would be very badly affected, but up to now I thought he was doing all right. "I absolutely agree" he said, "I'm about to ring the home now and I'll tell them we've discussed it together."
One of the Care Assistants told me this week that Brian had had a long chat with the young male CA and I had been so pleased to hear that. (That particular chap has not been in for two days, or I would have asked him what they talked about.) I am very aware that when I get to the home at the end of the afternoon, 5 p.m., to help with tea, sometimes Brian is quite tired by then. (The day before yesterday he had two ten-minute naps while actually eating - woke up refreshed and set off again.) He is perhaps a good bit more communicative during the day than I realise. I was told he had much enjoyed a music session one afternoon. When I asked him about it, he said "Ah, yes ..." but couldn't recall very much about it, other than he had enjoyed it.
So I am glad to have had a chance to talk about the DNR label with our GP, and for it to have been "removed" for now, and that our GP agreed with me.
The next seizure or stroke will come at some point because it is the nature of Brian's illness, a natural progression. And when it does, the severity of it will perhaps cause a re-think. But for now - my thanks to our GP.
Nan
so pleased to catch up & hear Brian is getting the care he so deserves & that people are listening to you
take care GIll
so pleased to catch up & hear Brian is getting the care he so deserves & that people are listening to you
take care GIll
