The OT tried to contact me on the way to work - but I hadn't got my handsfree kit on so I missed the call - and then couldn't get her on the number she left for me. They had an MDT meeting yesterday (I found that out from the nurse tonight) and obviously they want to talk to me about a home visit and aids for Edna.
When I got to the hospital Edna had been moved to the next bay down so she now has a new named nurse. According to her she had been moved 3 times - but I doubt it. I'm not sure why she was moved .
She told me she was going for a home visit (probably true), she told me she was pleased she was finally walking again (undoubtedly true) but that she had only just started walking (not sure if that is true or not - certainly she had a zimmer frame by her bed for the first time in a couple of days. But I am sure she has been walking with help. The nurses wouldnt wheel her to the toilet or bring her a commode when she is supposed to be mobile)
She was asking me to bring in some biscuits so she can offer biscuits to people at coffee break. This one had me puzzled. I wasn't sure if she toguht she was back at work or not. When I ponted out she had buscuits in the tin, she said tey were for HER, but she wanted bsucuits to offer other people. I got well confused with that one.
I got the usual information about the staff which I can't check if it is true or not - but suspect it is not. According to her almost ALL the staff have other family members who work at West Heath. Now I know that can happen - but not as often as Edna seems to think.
She had a nightie in her handbag, that she said was there becasue she thought it belonged to one of the other ladies. Its things like that that really worry - because that si when se seems totally out of touch with reality.
I would love a professional assesment of her cognition so I ahd some idea of how she is really getting on
Thursday, 6 August 2009
Wednesday, 5 August 2009
Lack of control
I realised some years ago that I am happiest and at my best when I am in control of events. I also realised I had to take responsibility for my life and my feelings. Happiness is a choice we make not something we struggle to reach.
In many respects Edna's situation is the ultimate in lack of control because there are so many unknowns. The state of her mind, the rate of deterioration, her other medical conditions are all things I can do nothing about - but all have an impact on my life. Because when something goes wrong, it is me that gets the phone call - and it can be at any hour of the day or night. Its like being on call 24/7.
This blog is part of my coping strategy because the thought process involved in blogging often reveals useful insights and can help me keep a sense of perspective. What I said in my last entry about me not coping is true - but responding to an email from Jane made me realise that statement gives a distorted view of what is going on.
There is no doubt Edna's problems do cause me stress. The insane chocolate cravings I was getting after visiting her are a clear sign of that. For someone who is trying to lose weight a chocolate craving is NEVER a good thing. I dont always sleep well and that leaves me little energy for my exercise routine. I havent excercosed this morning yet - but I am determined to do some before I go to work. Edna's crises almost inevitably cause me physical problems. Her first hospital admission -almost a year ago - caused an attack of cystitis that took weeks to fully clear up. Recent events have triggerred IBS.
But I take a appropriate measures and medication when I need it, and somehow I am succeeding in losing wieght (very slowly) dont have high blood pressure or diabetes and unlike so many women of my age I am not on a regimen of regular medication. So my health is prety good.
It isn't the physical aspects of Edna's situation that cause the most stress. I retired and went part time so I would have the time for that. It is the mental/spiritual aspects. Because what I want to acheive is what is best for Edna - not what is best for me. I have to somehow get inside her skin and work out what the torrent of words she bombards me with at every visit really means and help her to be as happy as possible. I have to be so careful not to impose solutions on her. I need a high degree of intuition almost bordering on telepathy. And I dont have that at the moment. I am however taking steps to increase my understanding/intuition so I have more confidence in my abilities. That is the bit I am not yet coping with
I am scared of failing her, scared of being in a postion where I could force a solution onto her that works for me but doesn't work for her. My prayer is always that I will have the wisdome to make the right decsion for Edna. Because however much Edna may dislike it, unless the hospital know I am in agreement with the discharge plan and care package, they can't discharge her.
Its scary having that sort of power over another human beings life
In many respects Edna's situation is the ultimate in lack of control because there are so many unknowns. The state of her mind, the rate of deterioration, her other medical conditions are all things I can do nothing about - but all have an impact on my life. Because when something goes wrong, it is me that gets the phone call - and it can be at any hour of the day or night. Its like being on call 24/7.
This blog is part of my coping strategy because the thought process involved in blogging often reveals useful insights and can help me keep a sense of perspective. What I said in my last entry about me not coping is true - but responding to an email from Jane made me realise that statement gives a distorted view of what is going on.
There is no doubt Edna's problems do cause me stress. The insane chocolate cravings I was getting after visiting her are a clear sign of that. For someone who is trying to lose weight a chocolate craving is NEVER a good thing. I dont always sleep well and that leaves me little energy for my exercise routine. I havent excercosed this morning yet - but I am determined to do some before I go to work. Edna's crises almost inevitably cause me physical problems. Her first hospital admission -almost a year ago - caused an attack of cystitis that took weeks to fully clear up. Recent events have triggerred IBS.
But I take a appropriate measures and medication when I need it, and somehow I am succeeding in losing wieght (very slowly) dont have high blood pressure or diabetes and unlike so many women of my age I am not on a regimen of regular medication. So my health is prety good.
It isn't the physical aspects of Edna's situation that cause the most stress. I retired and went part time so I would have the time for that. It is the mental/spiritual aspects. Because what I want to acheive is what is best for Edna - not what is best for me. I have to somehow get inside her skin and work out what the torrent of words she bombards me with at every visit really means and help her to be as happy as possible. I have to be so careful not to impose solutions on her. I need a high degree of intuition almost bordering on telepathy. And I dont have that at the moment. I am however taking steps to increase my understanding/intuition so I have more confidence in my abilities. That is the bit I am not yet coping with
I am scared of failing her, scared of being in a postion where I could force a solution onto her that works for me but doesn't work for her. My prayer is always that I will have the wisdome to make the right decsion for Edna. Because however much Edna may dislike it, unless the hospital know I am in agreement with the discharge plan and care package, they can't discharge her.
Its scary having that sort of power over another human beings life
Tuesday, 4 August 2009
The morning after
I still feel as if I could just sit in a corner and howl. So in terms of the title of my blog - at the moment I am not coping well.
I am have always maintained I am not really Edna's carer. But I read through the form Barbara gave me last night and I realised there are a lot of things I do that are valid to go on that form. So I will complete it and see what happens. After all I got the full time attendance allowance for her which I didnt expect. It is possible there is something I could for me. And at the moment I need to do something for me (see other blog!)
I was surprised when I got given that form. I think is is a sign that someone is looking out for me and that I am meant to fill that form in.
I am have always maintained I am not really Edna's carer. But I read through the form Barbara gave me last night and I realised there are a lot of things I do that are valid to go on that form. So I will complete it and see what happens. After all I got the full time attendance allowance for her which I didnt expect. It is possible there is something I could for me. And at the moment I need to do something for me (see other blog!)
I was surprised when I got given that form. I think is is a sign that someone is looking out for me and that I am meant to fill that form in.
Planning for discharge
I've just got home after te meeting at the hospital with the Social Worker - where I had Steve to support to me. As ever I have come home with craving for chocolate. I am sitting here now and I could just burst into tears. It isn't that the meeting went badly or that anything really upsetting happened - thats just the effect visiting Edna has on me.
The meeting went OK I think. There was te usual questions about what Edna can't and cannot do which she answered more or less honestly. She even said that having meals on wheels was a major help. The only major disagreement was when the nebuliser was being discussed. Although at one point she dud say she had found problems managing them, for most of the time when that was being discussed she insisted she could manage to use the nebuliser. I think she is confusing a number of things. First of all she thinks managing the nebuliser means just putting the mask on, plus I realised during a later conversation she was remembering the time nearly 2 years ago when she had a nebuliser for 14 days when she was being assessed by the Lung Function clnic.
She got a bit upset after the social worker left when we were discussing the nebuliser issue, also when I refused to bring her in some cold meat to make a sandwich. the conversation then got very confused and it seemed that everyone else on the ward has family bringing them in ecatly what tey want to eat and ' I just want to know I can have things to eat when I want them' Guilt trip or what!
She did say somethings during the meeting that surpised me. She admitted to being 'browned off' As one of the questions she had to answer was 'Have you sufferred a bereavement' they can guess that she probably is depressed. I have to trust that they are used to interpreting information given given by old ladies with a degree of dementia. But I dont trust them. That is soemthing I share with Edna. She doesn't trust anyone - me included. And I feel bloody useless as a result.
When she was asked where she wanted to go from hospital she made it clear she wanted to go back to Fosters. But she also said she would like to get out more and maybe go to a club. She even said she knew one or two (not sure that is correct) But I know she wont make the effort even to go down to the common room.
She did (to be fair) say that I had offerred many times to take her out in a wheelchair but she had refused.
This time I got given a form to fill in as a carer. I dont know if that is a good thing or a bad thing . I think I got it because I do her shopping.
All we can do is wait and see what happens . I have to bebhonest and say that is clincially they feel she needs nebulisres, Fosters is not going to work unless they can get medically trained carers who can do the nebuliser for her.
The meeting could have gone a lot worse than it did - so I suppsoe I ought to feel hopeful - but I dont
The meeting went OK I think. There was te usual questions about what Edna can't and cannot do which she answered more or less honestly. She even said that having meals on wheels was a major help. The only major disagreement was when the nebuliser was being discussed. Although at one point she dud say she had found problems managing them, for most of the time when that was being discussed she insisted she could manage to use the nebuliser. I think she is confusing a number of things. First of all she thinks managing the nebuliser means just putting the mask on, plus I realised during a later conversation she was remembering the time nearly 2 years ago when she had a nebuliser for 14 days when she was being assessed by the Lung Function clnic.
She got a bit upset after the social worker left when we were discussing the nebuliser issue, also when I refused to bring her in some cold meat to make a sandwich. the conversation then got very confused and it seemed that everyone else on the ward has family bringing them in ecatly what tey want to eat and ' I just want to know I can have things to eat when I want them' Guilt trip or what!
She did say somethings during the meeting that surpised me. She admitted to being 'browned off' As one of the questions she had to answer was 'Have you sufferred a bereavement' they can guess that she probably is depressed. I have to trust that they are used to interpreting information given given by old ladies with a degree of dementia. But I dont trust them. That is soemthing I share with Edna. She doesn't trust anyone - me included. And I feel bloody useless as a result.
When she was asked where she wanted to go from hospital she made it clear she wanted to go back to Fosters. But she also said she would like to get out more and maybe go to a club. She even said she knew one or two (not sure that is correct) But I know she wont make the effort even to go down to the common room.
She did (to be fair) say that I had offerred many times to take her out in a wheelchair but she had refused.
This time I got given a form to fill in as a carer. I dont know if that is a good thing or a bad thing . I think I got it because I do her shopping.
All we can do is wait and see what happens . I have to bebhonest and say that is clincially they feel she needs nebulisres, Fosters is not going to work unless they can get medically trained carers who can do the nebuliser for her.
The meeting could have gone a lot worse than it did - so I suppsoe I ought to feel hopeful - but I dont
Monday, 3 August 2009
Nebulizers
I got home today to be greeted by the news that the hospital had rung to ask if Edna had a nebuliser at home, becasue they want tos end her home on one. Now clinically I am 100% sure she needs s nebuliser- but she can't cope with it. She can't manipulate the nebules, she gets confused when trying to manipulate the mask and stuff.
Then of course there is the small maer of her remembering to use it.
It would be a DISASTER. It won't work. So I rang the ward to exprrss my views as politely as possible and got told they wondered if the carers could do it.
Dont they know what social services carers do? If anyone should know THEY should Or are they hoping I can pop round 4 times a day to give her her nubuliser???
We have the meeting tommorow to start discussing her care package for when she goes home so I can raise the issue then thank goodness.
I did ring the ward and tell them that she DOES have a nebuliser- but that IMO it was a non starter and gave them a bried resume of my reasons - so I don't feel TOO frustrated - but I do have a nasty feeling of deja vu about all this
.
Then of course there is the small maer of her remembering to use it.
It would be a DISASTER. It won't work. So I rang the ward to exprrss my views as politely as possible and got told they wondered if the carers could do it.
Dont they know what social services carers do? If anyone should know THEY should Or are they hoping I can pop round 4 times a day to give her her nubuliser???
We have the meeting tommorow to start discussing her care package for when she goes home so I can raise the issue then thank goodness.
I did ring the ward and tell them that she DOES have a nebuliser- but that IMO it was a non starter and gave them a bried resume of my reasons - so I don't feel TOO frustrated - but I do have a nasty feeling of deja vu about all this
.
Sunday, 2 August 2009
Not so well today
got a call about lunchtime from the hospital telling me Edna had been sufferring from chest pains, so they had given her an ECG and a GTN spray. I had been planning on going to see her today anyway so all that did was mean I went in as early as possible rtaher than leaving it until later.
When I got there she was on the bed, asleep, with a vomit bowl near her. When she woke she was glad to see me, and appreciated the Frangipan cakes I had got for her as per her request yesterday. She insisted I had one, but couldn't finish the one she was eating, Her chest sounded rattly and she was coughig up phlegm a lot. She said although the pain was better it hadn't gone.So when the nurses came out of report I buttonholed Malou and asked about the ecg and things. She is having blood tests tomorrow but Malou thought the pain had gone. I said according to Edna it hadn't and asked if the idea of a chest infection had been considered. Hopefully tommorrow the regular team will consider that.
After about 45 minutes Edna said I needn't stay. She denied feeling tired, or not feeling like talking, but I think that she didnt want company so I left.
I wasn't going to go in tomorrow but I will pop in at least for a few minutes to see if she is any better.
Whatever is wrong with her today, I think it started yesterday - so a chest infection is much more likely than heart problems .
When I got there she was on the bed, asleep, with a vomit bowl near her. When she woke she was glad to see me, and appreciated the Frangipan cakes I had got for her as per her request yesterday. She insisted I had one, but couldn't finish the one she was eating, Her chest sounded rattly and she was coughig up phlegm a lot. She said although the pain was better it hadn't gone.So when the nurses came out of report I buttonholed Malou and asked about the ecg and things. She is having blood tests tomorrow but Malou thought the pain had gone. I said according to Edna it hadn't and asked if the idea of a chest infection had been considered. Hopefully tommorrow the regular team will consider that.
After about 45 minutes Edna said I needn't stay. She denied feeling tired, or not feeling like talking, but I think that she didnt want company so I left.
I wasn't going to go in tomorrow but I will pop in at least for a few minutes to see if she is any better.
Whatever is wrong with her today, I think it started yesterday - so a chest infection is much more likely than heart problems .
Saturday, 1 August 2009
'They could make something up'
Just come back from hospital visiting. She wasn't as perky as usual and although she was sitting on the chair when I came in she lay on the bed for most of the visit.
She is convinced the lady in the next bed is a) filthy rich and b) lives in Billesly Lane. Since she said she hasn't really got to know anyone on the ward I wonder how she knows. But the lady in the next bed also remarked (as I was putting away Edna's clean clothes) that Edna ewas lucky to have somone to do thigns for her, that all her relatives lived too far away to help. So when some visitors turned up for her, Edna tried to imply that her neighbour had been lying. Ednba did concede that the visitors didn't HAVE to be relatives.
The conversation then turned to visitor behaviour. Edna said sometimes people turned up, said 'How are you then just sat there for an hour. ' They could make something up to say' was her ccomment. Is it possible that she is talking just becasue I am there? I dont think she is deleiberately making things up to fill silence - but maybe that is a clue to what is going on in her mind.
She told me she had noticed an extra tablet in among her regular medication the other day, and hadn't taken it until she was sure it was correct. This was soemthing I was able to check on, and it turns out that apart from the Oxybutinin (whihc is still being given BD ) the only chnage has been to reduce stop her lucntime Furosemide dose. This was part of their stratgey to prevent her askig to go to the loo every 15 minutes. They are monitoring her legs and although they are a bit worse, they are still manageable- but the dose WILL have to go back up eventually - and probably sooner rather than later. I am convinced the reason she stayed out of hospital so long this time was becasue she was taking her water tablets regularly- probably for the frst time in years (barring hospital admissions)
She liked the pictures of Steve's proposed new cat, and our holiday hotel in Cornwall. She will probably remember about both those bits of news. I can understand why Alma found it hard to beleive she really had a problem because she is very selective about what she can and can't remember.
If it is really important in her world paradigm I beleive she will remember it. If it isn't then she won't.
I must test that theory over the next few weeks. If I am right I am not sure how helpful it will be but anything that helps me understand her has got to be a help
She is convinced the lady in the next bed is a) filthy rich and b) lives in Billesly Lane. Since she said she hasn't really got to know anyone on the ward I wonder how she knows. But the lady in the next bed also remarked (as I was putting away Edna's clean clothes) that Edna ewas lucky to have somone to do thigns for her, that all her relatives lived too far away to help. So when some visitors turned up for her, Edna tried to imply that her neighbour had been lying. Ednba did concede that the visitors didn't HAVE to be relatives.
The conversation then turned to visitor behaviour. Edna said sometimes people turned up, said 'How are you then just sat there for an hour. ' They could make something up to say' was her ccomment. Is it possible that she is talking just becasue I am there? I dont think she is deleiberately making things up to fill silence - but maybe that is a clue to what is going on in her mind.
She told me she had noticed an extra tablet in among her regular medication the other day, and hadn't taken it until she was sure it was correct. This was soemthing I was able to check on, and it turns out that apart from the Oxybutinin (whihc is still being given BD ) the only chnage has been to reduce stop her lucntime Furosemide dose. This was part of their stratgey to prevent her askig to go to the loo every 15 minutes. They are monitoring her legs and although they are a bit worse, they are still manageable- but the dose WILL have to go back up eventually - and probably sooner rather than later. I am convinced the reason she stayed out of hospital so long this time was becasue she was taking her water tablets regularly- probably for the frst time in years (barring hospital admissions)
She liked the pictures of Steve's proposed new cat, and our holiday hotel in Cornwall. She will probably remember about both those bits of news. I can understand why Alma found it hard to beleive she really had a problem because she is very selective about what she can and can't remember.
If it is really important in her world paradigm I beleive she will remember it. If it isn't then she won't.
I must test that theory over the next few weeks. If I am right I am not sure how helpful it will be but anything that helps me understand her has got to be a help
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