I went to see Edna today and had a quick word with Alma before I went to the flat. She actually had a shower yesterday! And I think she let the girls dress her this morning. So something I said may have registered with her. But she was still wearing the same clothes today she had on Tuesday - so I still think there are issues with how well she can care for herself.
She seemed unsettled today and clearly is worried about the way things are going at the moment. She was saying she would let things go on as they are 'for a couple of days' I found myself wondering when the review of her care package would take place. I checked how long she has been home and to my surprise discovered it is 2 weeks and 2 days - so there is another 2 weeks almost before the 28 day review . It seems as if she has been home for MUCH longer than that.
As I write this we are on the verge of a swine flu pandemic. I spent the morning reading up on it for professional reasons - but Edna is so clearly in one of the very vulnerable groups , I found myself asking Alma if they had a pandemic plan - which they do.
If the pandemic happens and gets into Fosters Edna would be so SO vulnerable because of her COPD. I cant do anything about it - but I do feel I need to do what I can to ensure she is protected. Obviously if I come down with flu, I wont go and see her - but she has so many carers going in the chances of her being exposed are high. And if the pandemic hits hard, will carers and meals on wheels be available?
Yet another thing for me to worry about.
Thursday 30 April 2009
Tuesday 28 April 2009
Mrs Hyde back again?
I went to see Edna today partly to give her the receipt to prove I had paid her telephone bill and partly just to see her.
The first thing that happened was Alma asked me please to try and persuade her NOT to get dressed before the girls go in in the morning becasue they are worried about her personal hygiene and whether she is washing. I did my best. I didnt say Alma has asked me to talk to her but I managed to work the converstaion round to a discussion of what the girls did in the morning and suggested that for the rest of this week at least she should let them wash and dress her and see if she felt better during the day. My logic for this is that stuggling to get dressed makes her feel porly. All I can do is see what happens. According to Edna she is due to have a shower tomorrow anyway. This was news to Alma I might add.
The rest of the visit was vaguely disturbing. She apparently doesnt remember that she changed her will after Alan died and that I am now keeping it for her. She was also talking about a bank account that no-one knew about except her. When I reminded her I knew all about both Lloyds and Natwest she was clearly surprised and seemed concerned that I was saying I knew about her 2 Lloyds accounts. When I reminded her that she had signed the forms to enable me to manage her accounts, again she clearly did not remember it.
This is very worrying not because it is further evidence of her problem, but because it makes me feel very vulnerable to accusations of manipulation and trying to defraud her. Luckily during the course of our chat she did make it clear she was happy I was trying to help her. 'I know your OK - its everyone else I'm worried about'
At one point she didnt beleive she was 87 and clearly had no idea what day of the week it was.
I also got the feeling that some of the stuff she was telling about what she had and eaten recently wasnt accurate - but I have no easy way to check that.
She had another rant about being treated like a child. She knew (or seemed to know) that the consultant would be going to see her to review how she was getting on with the Exelon in capsule form. She asked me who had told me - and I said the district nurses. She then had a bit of arant about how they should have told her. I did try to get her to see that they may have told her but she forgot, but she wasnt prepared to accept that.
Mrs Hyde seemed to be just below the surface ready to emerge if given the slightest chance. It was a worrying visit. I left feeling ready to burst into tears. But having managed to get myself energised and positive after a few very bad days, I am not going to let this get me down. I need to acknowledge the emotion, and learn what I need to learn from it.
That is really what I do in the blog. By writing things down I get insights that are sometimes very surprising but often very helpful.
The first thing that happened was Alma asked me please to try and persuade her NOT to get dressed before the girls go in in the morning becasue they are worried about her personal hygiene and whether she is washing. I did my best. I didnt say Alma has asked me to talk to her but I managed to work the converstaion round to a discussion of what the girls did in the morning and suggested that for the rest of this week at least she should let them wash and dress her and see if she felt better during the day. My logic for this is that stuggling to get dressed makes her feel porly. All I can do is see what happens. According to Edna she is due to have a shower tomorrow anyway. This was news to Alma I might add.
The rest of the visit was vaguely disturbing. She apparently doesnt remember that she changed her will after Alan died and that I am now keeping it for her. She was also talking about a bank account that no-one knew about except her. When I reminded her I knew all about both Lloyds and Natwest she was clearly surprised and seemed concerned that I was saying I knew about her 2 Lloyds accounts. When I reminded her that she had signed the forms to enable me to manage her accounts, again she clearly did not remember it.
This is very worrying not because it is further evidence of her problem, but because it makes me feel very vulnerable to accusations of manipulation and trying to defraud her. Luckily during the course of our chat she did make it clear she was happy I was trying to help her. 'I know your OK - its everyone else I'm worried about'
At one point she didnt beleive she was 87 and clearly had no idea what day of the week it was.
I also got the feeling that some of the stuff she was telling about what she had and eaten recently wasnt accurate - but I have no easy way to check that.
She had another rant about being treated like a child. She knew (or seemed to know) that the consultant would be going to see her to review how she was getting on with the Exelon in capsule form. She asked me who had told me - and I said the district nurses. She then had a bit of arant about how they should have told her. I did try to get her to see that they may have told her but she forgot, but she wasnt prepared to accept that.
Mrs Hyde seemed to be just below the surface ready to emerge if given the slightest chance. It was a worrying visit. I left feeling ready to burst into tears. But having managed to get myself energised and positive after a few very bad days, I am not going to let this get me down. I need to acknowledge the emotion, and learn what I need to learn from it.
That is really what I do in the blog. By writing things down I get insights that are sometimes very surprising but often very helpful.
Sunday 26 April 2009
A prayer answered?
On Wednesday I was asking for help to hear and understand Edna's concerns. I am wondering if i have been shown a way to do that better - in a very unusual way. Last night at ghost hunt, I encountered an amazing medium. It is always possible to write off the TV mediums as fakes because the whole thing could have been staged and all the 'clients' could have been plants. Last night I saw the medium do a reading that I know wasn't a fake , and then very unnervingly she was able to tell me things about me and my situation that were uncannily accurate. While my state of mind could have been deduced from conversation and body language, the fact that I once owned an alsation who used to offer her left paw to shake could not have been. And it was information no-one else there knew about me. So she has a real ability.
Prior to this display of psychic ability, we had been discussing whether people could train their psychic powers. She says yes they can . We also discussed whether the way I seem to be a very good agony aunt is a demonstration of some psychic ability. She thinks it is. Now if I could improve that empathy and turn it to Edna's situation I rerally would hear and understand much better.
I am not going to write off ANYTHING however unusual that I think could help me in this situation. I know at least one ordained minister who would not write off mediumship and psychic powers as the work of the devil - so I am going to assume this may be an answer to my prayer on Wednesday (lets be honest my constant prayer since the diagnosis , in one form or another)
So I will try to book a training session with Carolyn and see what happens.
Prior to this display of psychic ability, we had been discussing whether people could train their psychic powers. She says yes they can . We also discussed whether the way I seem to be a very good agony aunt is a demonstration of some psychic ability. She thinks it is. Now if I could improve that empathy and turn it to Edna's situation I rerally would hear and understand much better.
I am not going to write off ANYTHING however unusual that I think could help me in this situation. I know at least one ordained minister who would not write off mediumship and psychic powers as the work of the devil - so I am going to assume this may be an answer to my prayer on Wednesday (lets be honest my constant prayer since the diagnosis , in one form or another)
So I will try to book a training session with Carolyn and see what happens.
Thursday 23 April 2009
Shopping trip
It happened!! It nearly DIDNT happen and she needed some persuasion, but I got her to Sainsbury and she was able to pick her own shopping.
We had one or two 'discussions'. She bought more tomatoes than I thought she needed and she insisted she does herself grilled tomatoes. Hmmm. She also bought some cooked chicken legs and again insisted they were part of her regular shopping. Again hmmmmm. And she got a dozen eggs insisiting she really liked them and often had 2 eggs a day. Even bigger hmmmmm as I know she has only got through 4 eggs in 9 days.
In the car on the way home she was talking about her friend Doris and siad she had heard she had died. This is a discussion we first had years ago. I commented that I was glad she had remembered that and told her about all the times in hopsital she was convinced Doris was there with her. Is this a sign that her cognition is improving as a result of treatment?
Getting her back into her flat proved challenging and at one point she nearly fell. When we got back into her flat thewre was no sign of her meal. I laft a message for the warden and the home care team to find out if it had come and been stored somewhere. It is possible that knowing she was coming out she cancelled the meal - but forget she cancelled it. She kept saying that next time we went out she would cancel so we could have lunch out.
I have the horrible feeling the net result of whaetever has gone wrong will be that she doesnt have a proper meal today. I'm betting that if the home care team offewr to make her something she will declare she can manage to get herself something to eat.
No doubt I will find out tommorrow.
On the whole a succesful day - and I know Edna enjoyed it.
We had one or two 'discussions'. She bought more tomatoes than I thought she needed and she insisted she does herself grilled tomatoes. Hmmm. She also bought some cooked chicken legs and again insisted they were part of her regular shopping. Again hmmmmm. And she got a dozen eggs insisiting she really liked them and often had 2 eggs a day. Even bigger hmmmmm as I know she has only got through 4 eggs in 9 days.
In the car on the way home she was talking about her friend Doris and siad she had heard she had died. This is a discussion we first had years ago. I commented that I was glad she had remembered that and told her about all the times in hopsital she was convinced Doris was there with her. Is this a sign that her cognition is improving as a result of treatment?
Getting her back into her flat proved challenging and at one point she nearly fell. When we got back into her flat thewre was no sign of her meal. I laft a message for the warden and the home care team to find out if it had come and been stored somewhere. It is possible that knowing she was coming out she cancelled the meal - but forget she cancelled it. She kept saying that next time we went out she would cancel so we could have lunch out.
I have the horrible feeling the net result of whaetever has gone wrong will be that she doesnt have a proper meal today. I'm betting that if the home care team offewr to make her something she will declare she can manage to get herself something to eat.
No doubt I will find out tommorrow.
On the whole a succesful day - and I know Edna enjoyed it.
A timely refelction
I subscribe to health fitness and weight loss site that sends out various newsletters every day. One is called 'Healthy reflections. I often put these in my other blog about managing changes in my life - the mian chnage I am trying to manage being getting rid of my excess fat!
However this one seems very apt for this blog.
One common trait to nearly every good leader is the art of listening. Many times, the best leaders can be among the quietest in the room. They know their time is well spent in hearing new perspectives, ideas, and thoughts. It's how they grow personally and build visions. The wisest leaders know that hearing themselves talk is no way to build trust and goodwill. You can do the same thing. When a friend needs to talk, resist the urge to give advice right away and just listen. Ask questions, and really try to understand the answer. When a customer calls, don't say a word about your product until you fully know their needs. When your spouse is hurting, it's not the time to prove that you were right. Over time, you can develop that leader-like sense of when to open your mouth and when to keep it clamped firmly shut.
In a way I am trying to 'lead' a diverse gorup of Edna and her carers down a path that works for all of them - the goal being Edna's continued health. I know I tend to jump to conclusions sometimes. I do need to listen to what everyone - especially Edna is saying to make sure I have the full picture. I ama good listener - its one reason why I have ended up being an agony auntto so many people over the years . It is something I pride myself on. I need to use those skills now with Edna
Today the plan is thast I am taking Edna out to do her shopping for the first time in a long time. I wonder if she will go or find an excuse to duck out of it? If she does I need to hear the message behind her words and actions.
May God grant me the grace to hear properly, the discernment to understand properly and the patience to cope.
However this one seems very apt for this blog.
One common trait to nearly every good leader is the art of listening. Many times, the best leaders can be among the quietest in the room. They know their time is well spent in hearing new perspectives, ideas, and thoughts. It's how they grow personally and build visions. The wisest leaders know that hearing themselves talk is no way to build trust and goodwill. You can do the same thing. When a friend needs to talk, resist the urge to give advice right away and just listen. Ask questions, and really try to understand the answer. When a customer calls, don't say a word about your product until you fully know their needs. When your spouse is hurting, it's not the time to prove that you were right. Over time, you can develop that leader-like sense of when to open your mouth and when to keep it clamped firmly shut.
In a way I am trying to 'lead' a diverse gorup of Edna and her carers down a path that works for all of them - the goal being Edna's continued health. I know I tend to jump to conclusions sometimes. I do need to listen to what everyone - especially Edna is saying to make sure I have the full picture. I ama good listener - its one reason why I have ended up being an agony auntto so many people over the years . It is something I pride myself on. I need to use those skills now with Edna
Today the plan is thast I am taking Edna out to do her shopping for the first time in a long time. I wonder if she will go or find an excuse to duck out of it? If she does I need to hear the message behind her words and actions.
May God grant me the grace to hear properly, the discernment to understand properly and the patience to cope.
Wednesday 22 April 2009
Patient focussed care
That is the mantra of the NHS . Right now I feel it is not exactly failing Edna but not really helping her either.
Edna's GP is refusing to prescribe her Rivastigmine. So Dr Ostler (I think that is the name ) who I beleive is the psychogeriatrician who originally reccomended the Rivastigmine is going to continue to prescribe it. But finally realising that the patch isn't really suitable for a patiet NOT in reeidential care she is being changed to the oral version. This should make thingas easier since it can be included in a blister pack - except it is a twice daily dosage so it needs the home care team to prompt -and hopefully observe.
The downside is she may well have more side effects, and because it is coming by a different route it will not be in the same blister pack with her other medications. Now I can see that causing a problem since Edna doesnt really like change and I suspect will panic a bit about it. She will certainly get fed up and start complaining about why things have to change and why can't she be left to get on with things the way she used to.
The district nurse who rang me was at great pains to reassure me that they were not discharging Edna, that they would still be seeing her at least once a week for her legs - but clearly the impossibility of anyone not medically trained managing the patch on her own has changed plans.
I am also getting rather annoyed by Alma the wraden at Fosters. She clearly thinks very poorly of the NHS and the home care team. Given half a chnace she will go on about how if GP's didn't prescribe paracetamol and E45 cream they would have the money for the more expensive drugs. She also c an't see why they bring two or sometimes 3 people to visit Edna and thinks it is a waste of money. She may well be right - but when I am concerned about Edna I don;t really care about her views on things ! More worringly I don;t think she rerally beleives the diagnosis of dementia. She has never beleived half of Edna's problems were real - and she may well have a point. She is quite capable of attentuon seeking behaviour - as are all old people. But if Alma really thinks Edna could fool a psychaitrist into thinking she had dementia when she didnt then I think SHE needfs some treatment.
I am worried how this could impact on Edna. Alma can be very brusque - and sometimes I think Edna needs that . She is inclined to wallow in self pity (and right now that feels like the pot calling the kettle black) But how much of her awkwardness is genuine and how much is the dementia? Will Alma allow for that? And what could it do to Edna if she doesnt? This comes back to the point that I have no idea of how to deal with someone with dementia - and I dont suppose Alma does either. But at least I beleive the d ementia exists.
There is only 3 weeksa of the home care package left. I hope the care can be continued for a while after the 28 days. They seem to be working pretty well - and I was impressed with the way they rang me as soon as they noticed a problem with the blister pack.
Now if only I culd solve the mystery of where those 3 old blister packs came from. Alma denies all knowledge of them. When she told me her medeications were sorted out she meant new packs would arrive today. So where were those 3 old packs and who put them in the cupboard. Did Edna do it and lie to me? or did she genuinely forget? Or did the homecare team find them the night before last?
I would love to know but unless the homecare team DID find them I doubt if I ever will
Edna's GP is refusing to prescribe her Rivastigmine. So Dr Ostler (I think that is the name ) who I beleive is the psychogeriatrician who originally reccomended the Rivastigmine is going to continue to prescribe it. But finally realising that the patch isn't really suitable for a patiet NOT in reeidential care she is being changed to the oral version. This should make thingas easier since it can be included in a blister pack - except it is a twice daily dosage so it needs the home care team to prompt -and hopefully observe.
The downside is she may well have more side effects, and because it is coming by a different route it will not be in the same blister pack with her other medications. Now I can see that causing a problem since Edna doesnt really like change and I suspect will panic a bit about it. She will certainly get fed up and start complaining about why things have to change and why can't she be left to get on with things the way she used to.
The district nurse who rang me was at great pains to reassure me that they were not discharging Edna, that they would still be seeing her at least once a week for her legs - but clearly the impossibility of anyone not medically trained managing the patch on her own has changed plans.
I am also getting rather annoyed by Alma the wraden at Fosters. She clearly thinks very poorly of the NHS and the home care team. Given half a chnace she will go on about how if GP's didn't prescribe paracetamol and E45 cream they would have the money for the more expensive drugs. She also c an't see why they bring two or sometimes 3 people to visit Edna and thinks it is a waste of money. She may well be right - but when I am concerned about Edna I don;t really care about her views on things ! More worringly I don;t think she rerally beleives the diagnosis of dementia. She has never beleived half of Edna's problems were real - and she may well have a point. She is quite capable of attentuon seeking behaviour - as are all old people. But if Alma really thinks Edna could fool a psychaitrist into thinking she had dementia when she didnt then I think SHE needfs some treatment.
I am worried how this could impact on Edna. Alma can be very brusque - and sometimes I think Edna needs that . She is inclined to wallow in self pity (and right now that feels like the pot calling the kettle black) But how much of her awkwardness is genuine and how much is the dementia? Will Alma allow for that? And what could it do to Edna if she doesnt? This comes back to the point that I have no idea of how to deal with someone with dementia - and I dont suppose Alma does either. But at least I beleive the d ementia exists.
There is only 3 weeksa of the home care package left. I hope the care can be continued for a while after the 28 days. They seem to be working pretty well - and I was impressed with the way they rang me as soon as they noticed a problem with the blister pack.
Now if only I culd solve the mystery of where those 3 old blister packs came from. Alma denies all knowledge of them. When she told me her medeications were sorted out she meant new packs would arrive today. So where were those 3 old packs and who put them in the cupboard. Did Edna do it and lie to me? or did she genuinely forget? Or did the homecare team find them the night before last?
I would love to know but unless the homecare team DID find them I doubt if I ever will
Tuesday 21 April 2009
Just when I thoght things were going ok
.......... something major goes wrong.
Yesterday I had a call from someone (district nurse?) witha query about Edna's medication saying I needed to pick it up. I didn;t get this meassge until today - so I rang the warden and she said it was all sorted out. I have never collected Edna's medication.
So I popped across to see Edna and flund 3 blister packs in her cupboard. This evening I got a call from the home care team comncerned that the packs are all dated February and don lt contain the right drugs.
Luckily the morning meds are correct so I've been able to tell them they can be given - but to omit the evening ones. I have also said that by tomorrow they will have blister packs wioth the CORRECT drugs in.
I will go over in the morning and sort it out. Somoen has got something wrong - and I intend to find out eho.
Edna will either be totally laid back and 'it doesn't matter becasue they do any good' OR she will be in a panic 'why can't it be simple like it was before'
Both attitudes are equally annoying.......................
Yesterday I had a call from someone (district nurse?) witha query about Edna's medication saying I needed to pick it up. I didn;t get this meassge until today - so I rang the warden and she said it was all sorted out. I have never collected Edna's medication.
So I popped across to see Edna and flund 3 blister packs in her cupboard. This evening I got a call from the home care team comncerned that the packs are all dated February and don lt contain the right drugs.
Luckily the morning meds are correct so I've been able to tell them they can be given - but to omit the evening ones. I have also said that by tomorrow they will have blister packs wioth the CORRECT drugs in.
I will go over in the morning and sort it out. Somoen has got something wrong - and I intend to find out eho.
Edna will either be totally laid back and 'it doesn't matter becasue they do any good' OR she will be in a panic 'why can't it be simple like it was before'
Both attitudes are equally annoying.......................
Life with a dementia sufferer
Everyone thinks about the problems if daily living with a dementia patient. The things they can't do for themselves, the problems caused by memory loss, the mood swings that affect those around them.
I do have those concerns in a small way, but I'm not living with Edna so it doesnt have a huge impact on me and mine . What is really getting to me at the moment is the huge uncertainty.
How long will she be able to live on her own?
What will happen when the current care package is reviewed?
Will she accept help if she has to pay for it?
What will happen if I cant persuade her to give me power of attourney?
How much official help will there be for me - if any?
How bad will things have to get for Fosters management to say she can no longer stay there?
Can Fosters actually evict her legally?
If they cant then will I be able to persuade Edna that she needs to move?
Will I be able to persuade Edna to do ANYTHING she doesn't really want to do?
How long is all this going to go on?
How do I stay sane through all this?
The effect of all this uncertainty on me is pronounced - and that does impact on me and mine. I dont have any control over any of this. The irony is that a lot of Edna's stubborness is becasue she feels she is losing control over her life. And sadly she is right - but it isnt me doing it - its the dementia she doesnt know she suffers from.
Should I tell her? Would it make things easier? Would she beleive me? Would she understand? Does she already know anyway? I dont know if the hospital told her.I think if they had she would have talked to me about it so I am fairly confident they didnt. I have always told her I wont lie to her - and I wont. But I am not telling her the whole truth at the moment. Morally and ethically is that the same as lying to her?
Her illness is currently the elephant in the room every time I see her. Maybe it would be best to acknowledge it. Maybe there is someway it can be discussed without using ther 'd' word - and certainbly not the 'a' word. I am so scared that if she knows she will just give up and sink even further into depression.
This uncertainty is something I didnt anticipate in theaftermath of the diagnosis and its a much bigger problem than the disease at this time.
I really need to talk to someone expert about all this. Its not much of an action plan but its better than nothing.
I do have those concerns in a small way, but I'm not living with Edna so it doesnt have a huge impact on me and mine . What is really getting to me at the moment is the huge uncertainty.
How long will she be able to live on her own?
What will happen when the current care package is reviewed?
Will she accept help if she has to pay for it?
What will happen if I cant persuade her to give me power of attourney?
How much official help will there be for me - if any?
How bad will things have to get for Fosters management to say she can no longer stay there?
Can Fosters actually evict her legally?
If they cant then will I be able to persuade Edna that she needs to move?
Will I be able to persuade Edna to do ANYTHING she doesn't really want to do?
How long is all this going to go on?
How do I stay sane through all this?
The effect of all this uncertainty on me is pronounced - and that does impact on me and mine. I dont have any control over any of this. The irony is that a lot of Edna's stubborness is becasue she feels she is losing control over her life. And sadly she is right - but it isnt me doing it - its the dementia she doesnt know she suffers from.
Should I tell her? Would it make things easier? Would she beleive me? Would she understand? Does she already know anyway? I dont know if the hospital told her.I think if they had she would have talked to me about it so I am fairly confident they didnt. I have always told her I wont lie to her - and I wont. But I am not telling her the whole truth at the moment. Morally and ethically is that the same as lying to her?
Her illness is currently the elephant in the room every time I see her. Maybe it would be best to acknowledge it. Maybe there is someway it can be discussed without using ther 'd' word - and certainbly not the 'a' word. I am so scared that if she knows she will just give up and sink even further into depression.
This uncertainty is something I didnt anticipate in theaftermath of the diagnosis and its a much bigger problem than the disease at this time.
I really need to talk to someone expert about all this. Its not much of an action plan but its better than nothing.
Monday 20 April 2009
A flying visit
Edna was having lunch in the common room when I got there. And the warden told me that she had asked for a salad from meals on wheels today so she could have it tonight.
She had another whinge about her not having a key - but when I reminded her she had agreed to the key safe shedid agree that she had. Alma says she's never locked her unless she's out - so the key safe is probably redundant. But that may change.
When I reminded her about us gloing shopping her immediate reaction was 'Oh not today' with the implication that she didn't feel up to. When I cautiosly explored further plans for Thursday -waht time and how long etc - she idignantly denied any idea that she wouldn't be fit for it - and said she hadn't wanted to go today becasue the shelves are always empty on Monday. Hmm.... well we'll see.
I'm not sure she will go with me, Alma is certain she won't and wanted to make a £5.00 bet. Sue thinks she might. Time will tell
Her cognition seems to have improved back in her own home - but I still feel Mrs Hyde isn't far away. She is still fightin gfor control of things. She refused point blank to let the carers put her MDS back on top of the fridge last night - but it was there today. However I can see she hasn't been taking all her tablets.
I still feel I am in foreign territory with no map to guide me. I think the next major event will be the 28 day review of the care plan. Thats when it could all fall apart - especially with regard to her patches.
I'm having moire problems with the care system than I am with her dementia at the moment. I wonder if I will look back on this entry in a few weeks or months and wish it was still like that................
She had another whinge about her not having a key - but when I reminded her she had agreed to the key safe shedid agree that she had. Alma says she's never locked her unless she's out - so the key safe is probably redundant. But that may change.
When I reminded her about us gloing shopping her immediate reaction was 'Oh not today' with the implication that she didn't feel up to. When I cautiosly explored further plans for Thursday -waht time and how long etc - she idignantly denied any idea that she wouldn't be fit for it - and said she hadn't wanted to go today becasue the shelves are always empty on Monday. Hmm.... well we'll see.
I'm not sure she will go with me, Alma is certain she won't and wanted to make a £5.00 bet. Sue thinks she might. Time will tell
Her cognition seems to have improved back in her own home - but I still feel Mrs Hyde isn't far away. She is still fightin gfor control of things. She refused point blank to let the carers put her MDS back on top of the fridge last night - but it was there today. However I can see she hasn't been taking all her tablets.
I still feel I am in foreign territory with no map to guide me. I think the next major event will be the 28 day review of the care plan. Thats when it could all fall apart - especially with regard to her patches.
I'm having moire problems with the care system than I am with her dementia at the moment. I wonder if I will look back on this entry in a few weeks or months and wish it was still like that................
Sunday 19 April 2009
A day at home
I haven't been over to see Edna today. Steve rang her this morning - and rather worryingly reported that she asked if I was going over. So I was expecting her to say she nedeed me when I did ring. But she didn't. In fact she wasn't even in when I rang. She had signed up for the sunday lunch provided by the wardens and had gone down to the common room to have it.
She told me she hadn't eaten her meat but had goven it Phyllis who had it in a sandwich later. Is that true or not? I doubt if anyone knows - except Phyllis. I am sure the wardens will have kept an eye on what she ate tho . If they feel she didn't eat much I will find out. I just hope they didn't find pout about her fall yesterday. But even if they did, I'm not Foster's staff so I didn;t do anything wrong.
She sounded a bit down when I said I would see her tomorrow. But today she had 2 phonecalls (Steve and Len) as well as my call, plus she had company during lunch, and she would have 4 visits ( 3 social services and the district nurses) so she hasn't been ignored.
I just hope the duplicate key appears soon then she may feel more secure and in control of things. Then she may be more trusting of everyone.
I am never sure how muc of her mistrrust is her natural tendency (much like Mum!) and how much is Alzheimers induced. I dont know which would be better. If it is batural I can try to lose logic to to get her to realise I am on her side. If its Alzheimers logic wonlt work - but it may go away quickly.
My next big decision has got to be whether I try to get her to consider giving me power of attourney. I donlt want it - but I would prefer that to being appointed her receiver.
She told me she hadn't eaten her meat but had goven it Phyllis who had it in a sandwich later. Is that true or not? I doubt if anyone knows - except Phyllis. I am sure the wardens will have kept an eye on what she ate tho . If they feel she didn't eat much I will find out. I just hope they didn't find pout about her fall yesterday. But even if they did, I'm not Foster's staff so I didn;t do anything wrong.
She sounded a bit down when I said I would see her tomorrow. But today she had 2 phonecalls (Steve and Len) as well as my call, plus she had company during lunch, and she would have 4 visits ( 3 social services and the district nurses) so she hasn't been ignored.
I just hope the duplicate key appears soon then she may feel more secure and in control of things. Then she may be more trusting of everyone.
I am never sure how muc of her mistrrust is her natural tendency (much like Mum!) and how much is Alzheimers induced. I dont know which would be better. If it is batural I can try to lose logic to to get her to realise I am on her side. If its Alzheimers logic wonlt work - but it may go away quickly.
My next big decision has got to be whether I try to get her to consider giving me power of attourney. I donlt want it - but I would prefer that to being appointed her receiver.
Saturday 18 April 2009
Dignity and respect vs safety
Edna is fiercely proud and independent, and is intensly worried about losing control over life. So despite the key safe (and the fact that she always leaves her door propped open when she is in 'just in case' I have still buzzed her flat for her to open the front door to me. I did that today - and by the time I had got to the flat she had fallen on the floor getting back from the door button to her chair. I should have pulled the cord to get help for her - but that would have brought the paramedics automatically. She insisted she could get up by herself - and actually DID manage to get up very painfully and slowly. So I haven't told anyone - but I think I should. But if I do she will be mad at me 'for making a fuss'
But I do respect her right to make her own decisions. She isn't mentally incompetent. I don't want to take away all her control over her life - because she less she does, the less she will be able to do. But how far can I let that compromise her safety? And was I right to beleive her when she said she was OK. Lots of questions - an no answers
But I have made it plain in future I won't be buzzing her to open the door.
On the plus side, Edna has jmped on the idea that next Thursday I will take her out to do her own shopping. I wonder if it will actually happen.
I have read the care plan and now knw there will have to be review after 28 days. I guess that is when they will start delving into her financial affairs to assess what she is entitled to. If the free care stops, will she be willing to pay for care to continue?
I still have far more questions than answers, still have no real idea how all this is going to turn out, and what if any input I will need to have. Hopefully none on a regular basis.
I could sit here all day looking at 'what if' situations. reality is all I can do is wait and see how things turn out. But reality doean't me feel happy.
But I do respect her right to make her own decisions. She isn't mentally incompetent. I don't want to take away all her control over her life - because she less she does, the less she will be able to do. But how far can I let that compromise her safety? And was I right to beleive her when she said she was OK. Lots of questions - an no answers
But I have made it plain in future I won't be buzzing her to open the door.
On the plus side, Edna has jmped on the idea that next Thursday I will take her out to do her own shopping. I wonder if it will actually happen.
I have read the care plan and now knw there will have to be review after 28 days. I guess that is when they will start delving into her financial affairs to assess what she is entitled to. If the free care stops, will she be willing to pay for care to continue?
I still have far more questions than answers, still have no real idea how all this is going to turn out, and what if any input I will need to have. Hopefully none on a regular basis.
I could sit here all day looking at 'what if' situations. reality is all I can do is wait and see how things turn out. But reality doean't me feel happy.
Friday 17 April 2009
A better day
Today has gone better in some ways - but I still have a lot of worries.
The district urses don't want me to manage her patches. Edna told them she had visitors every day who COULD manage it. I have told them I can't and they are happy with that. But they did give me the bad news that the GP doesn't want to prescribe the pacthes. There is a general feeling that orasl medication would be easier. I can't say I disagree with that. I suspect the pacth was selected as a way to reduce side effects. IMO the patch is better suited for a patient in a nursing home enviroinment or with a permanent carer. As long as the side effects are not troublesome the capsules would be better. The cost is the same - so if that is what the GP is worried about it will make little difference. Almas tells me the nurses have got at least one prescription abyway so hopefully we have a month to sort it out.
Edna was quite bright when I popped in to see her. She had srted out some paperwork and thrown it away. I just hope she hasn't thrown away anything important.
I have o idea what she has eaten today. The home care team recorded that she hadn't eaten her meal, but I couldn't see it anywhere. The pudding was still therer and she was planning on eatig it cold. But accoprding to her she had a bacon and egg sandwich and has still got some of that left. She said she eaten more than she used to but she wasn't very happy when I pointed out that a bacon and egg sandwich (whicc is all she I think she will have eaten today) wasn't really enough.
I also saw a flash of Mrs Hyde when I sad I thought she needed to think about somebody having power of attourney. She was very anti the idea and made a barbed comment that she hadn't even been able to the keys away from me. No point in trying to argue with her and point out that I made sure the form got signed asap so a new keey could be cut so she COULD have a key to replace the one that went into the key safe - that she agreed to have.
Alma has told me that the girls don't have tome to do shopping, So tommorrow I am going to have to tell her I will have to do that for a bit for her. The upsdie is that we will have to go through her stores to make a list so I will get some idea how mch of the stuff I got for her has been eaten. Iam not looking forward to =twelling her I will need to do her shopping for a bit tho. Mrs Hyde may well appear again. But it may give me the chance to get her out with me to do the shopping.
I still feel like crying every time I leave her - but I do feel things are more or less under control at the moment.
The district urses don't want me to manage her patches. Edna told them she had visitors every day who COULD manage it. I have told them I can't and they are happy with that. But they did give me the bad news that the GP doesn't want to prescribe the pacthes. There is a general feeling that orasl medication would be easier. I can't say I disagree with that. I suspect the pacth was selected as a way to reduce side effects. IMO the patch is better suited for a patient in a nursing home enviroinment or with a permanent carer. As long as the side effects are not troublesome the capsules would be better. The cost is the same - so if that is what the GP is worried about it will make little difference. Almas tells me the nurses have got at least one prescription abyway so hopefully we have a month to sort it out.
Edna was quite bright when I popped in to see her. She had srted out some paperwork and thrown it away. I just hope she hasn't thrown away anything important.
I have o idea what she has eaten today. The home care team recorded that she hadn't eaten her meal, but I couldn't see it anywhere. The pudding was still therer and she was planning on eatig it cold. But accoprding to her she had a bacon and egg sandwich and has still got some of that left. She said she eaten more than she used to but she wasn't very happy when I pointed out that a bacon and egg sandwich (whicc is all she I think she will have eaten today) wasn't really enough.
I also saw a flash of Mrs Hyde when I sad I thought she needed to think about somebody having power of attourney. She was very anti the idea and made a barbed comment that she hadn't even been able to the keys away from me. No point in trying to argue with her and point out that I made sure the form got signed asap so a new keey could be cut so she COULD have a key to replace the one that went into the key safe - that she agreed to have.
Alma has told me that the girls don't have tome to do shopping, So tommorrow I am going to have to tell her I will have to do that for a bit for her. The upsdie is that we will have to go through her stores to make a list so I will get some idea how mch of the stuff I got for her has been eaten. Iam not looking forward to =twelling her I will need to do her shopping for a bit tho. Mrs Hyde may well appear again. But it may give me the chance to get her out with me to do the shopping.
I still feel like crying every time I leave her - but I do feel things are more or less under control at the moment.
Thursday 16 April 2009
So far not so good
Well the missing Rivastigmine patches have turned up. Edna has had the paramedics out because she pulled the emergency cord when she supposedly fell - except she hadn't fallen. At least she was sitting in a chair when Alma got there. She starting getting undressed in front of the paramedics. And the district nurses want to talk to me to ask me if I can take over responsibility for the patch.
I have had a chat with Alma and both of us feel Fosters is NOT the most appropriate place for her if she is this bad. But Alma has said we have to allow her a couple of days to settle in. She is institutionalised after 5months (more or less) in hospital.
The agreement was I would ring her after work and if she was OK I wouldn't go over. Since she was out of her flat when I first rang (Alma told me she was in the common room) when I did get her as she said she was OK, I said I would see her tomorrow. She accpeted that - sort of - but I think I was meant to say 'Of course I'm coming over to see you'
I have the horrible feeling the paramedics may end up being called again tonight - in which case I have no doubt I will be called over as well. I hope I am wrong.
As far as the District nurses request that isn;t a long term practical solution for me. That may trigger an early review of her care package whihc would be useful as there may be care options that COULD keep her at Fosters.
I have had a chat with Alma and both of us feel Fosters is NOT the most appropriate place for her if she is this bad. But Alma has said we have to allow her a couple of days to settle in. She is institutionalised after 5months (more or less) in hospital.
The agreement was I would ring her after work and if she was OK I wouldn't go over. Since she was out of her flat when I first rang (Alma told me she was in the common room) when I did get her as she said she was OK, I said I would see her tomorrow. She accpeted that - sort of - but I think I was meant to say 'Of course I'm coming over to see you'
I have the horrible feeling the paramedics may end up being called again tonight - in which case I have no doubt I will be called over as well. I hope I am wrong.
As far as the District nurses request that isn;t a long term practical solution for me. That may trigger an early review of her care package whihc would be useful as there may be care options that COULD keep her at Fosters.
Wednesday 15 April 2009
A night of reflection
I didn't sleep brilliantly last night - but I slept a lot better than I thought I would. And the net result is I feel better this morning. 'Desperate' was a strong word to use - and it was an exaggeration born of fatigue. This morning I have an action plan to address the immediate problems I identified yesterday .
But the reality check I got yesterday is still very real. Edna's illness makes her far more vulnerable than I had originally realised.
But the reality check I got yesterday is still very real. Edna's illness makes her far more vulnerable than I had originally realised.
How vulnerable is she?
Today the reality of how vulnerable Edna is has hit me. Although Edna can't give me accurate details, I can tell from the folder that the carers visits went as planned. They offered to make her a sandwich last night but she refused. (According to her she had made herself two boiled eggs - a claim that is so laughable I didn't even bother to go and check how many eggs were left in the fridge!)
The Fosters staff didn't do their call at the right time but that got rectified as soon as the wardens came on duty.
I am unclear about the district nurses but they did call because the bandaged her leg. They also (I think) changed her patch but .........THE BLOODY PATCHES ARE MISSING!!!!! I am hoping someone took them with them for safe keeping.
My only consolation is that missing a couple of days treatment won't be disastrous. But it has got me worried about ther management of her medication. I found a box a pain killers hidden in a box, and as she had been complainign about headaches I gave them to Edna. Then all the way home I found myself thinking of all the ways that could go wrong. Luckily her insitinct is NOT to take painkillers so I don't think she will OD - but I can't be sure.
I feel desperate at the momemnt because I have no control over her care, and will have to rely on the wardens and the carer's head office (the number is on my mobile!!) to keep me informed.
The wardens were trying to contact the social worker. I don't know why becasue neither she nor I have been able to contact them because the phone has been permanently engaged. I must try again tomorrow.
She was very down when I saw her today, and clearly still 'surmising' a lot of things (like the two boiled eggs). She does seem to realise that she needs to make an effort to get out of her room and I am confident Alma and Sue will do their best to encourage her to go down to the common room (Alma with be so forthright maybe the word is bully!)
So day 1 has gone sort of OK, but I have had a reality check. I do have grave doubts about how long she will be safe and well at Fosters. Well one step at a time......................
The Fosters staff didn't do their call at the right time but that got rectified as soon as the wardens came on duty.
I am unclear about the district nurses but they did call because the bandaged her leg. They also (I think) changed her patch but .........THE BLOODY PATCHES ARE MISSING!!!!! I am hoping someone took them with them for safe keeping.
My only consolation is that missing a couple of days treatment won't be disastrous. But it has got me worried about ther management of her medication. I found a box a pain killers hidden in a box, and as she had been complainign about headaches I gave them to Edna. Then all the way home I found myself thinking of all the ways that could go wrong. Luckily her insitinct is NOT to take painkillers so I don't think she will OD - but I can't be sure.
I feel desperate at the momemnt because I have no control over her care, and will have to rely on the wardens and the carer's head office (the number is on my mobile!!) to keep me informed.
The wardens were trying to contact the social worker. I don't know why becasue neither she nor I have been able to contact them because the phone has been permanently engaged. I must try again tomorrow.
She was very down when I saw her today, and clearly still 'surmising' a lot of things (like the two boiled eggs). She does seem to realise that she needs to make an effort to get out of her room and I am confident Alma and Sue will do their best to encourage her to go down to the common room (Alma with be so forthright maybe the word is bully!)
So day 1 has gone sort of OK, but I have had a reality check. I do have grave doubts about how long she will be safe and well at Fosters. Well one step at a time......................
Tuesday 14 April 2009
Home at last
Edna is finally home - and I am nervous. There is so much that can go wrong - and if she pan ics it will be me she rings. She's already rung me once to ask where I had put the money. She though I had goiven to her. i hadn't I put it in her purse in the drawer - where she has kept her money for the last .........I don't know HOW many years.
She seemed almost desolate when I fnally left her (sbout 2 hours ago!) and I am sure she was thinking about being ll on her own and feeling lonely. I thin k once she gets used to the carers coming in it will be better. But I am worriedf she will panic. And if she does guess who she will ring.
This is going to be the real test of how bad her dementia really is. Will she lose her medicines? Will she let the carers do their jobs ? Will she remember when the carers are coming in? Will she panic becasue she thinks they should have come becasue she is confused about the time of day.
I will drive myself bananas is they think about everything. I can't do anything except rerspond to situations as they arise. I just have to hope they don't arise too often
She seemed almost desolate when I fnally left her (sbout 2 hours ago!) and I am sure she was thinking about being ll on her own and feeling lonely. I thin k once she gets used to the carers coming in it will be better. But I am worriedf she will panic. And if she does guess who she will ring.
This is going to be the real test of how bad her dementia really is. Will she lose her medicines? Will she let the carers do their jobs ? Will she remember when the carers are coming in? Will she panic becasue she thinks they should have come becasue she is confused about the time of day.
I will drive myself bananas is they think about everything. I can't do anything except rerspond to situations as they arise. I just have to hope they don't arise too often
Monday 13 April 2009
Fears and anxieties
Almost the first thing Edna did when I went to see her today was start crying. She was so afraid I was going to abandon her. She said she had seen tow other patients abandoned by their families today. I am assuming that is delusion fueled by her fear.
After we sorted that we then had a bit of a dispute about her ownership of her keys. Her key is now in the key safe - but I have re-assured her she can get a duplicate cut and that Fosters won't mind.
Then a bit later I had to re-assure that Fosters hasn't changed, tnat he rflat is still there, and still her's.
An interesting delusion is that she said she had been told a lot of the ladies were moving out of Fosters. The implication was that there was something wrong with Fosters. But the people she thought had left had all gone to situations where tney had more regular care. I suspect that this is fueled by a deep down realisation that she may need more care than a care package can provide. Maybe she also realises that a care home would give her more company than she will get at Fosters.
I am so nervous about tommorrow. I just hope everything goes smoothly and that she DOES get home. But I am also nervous about what will happen when she is home and how many miles I am going to drive.
Well the aiting is nearly over. As I said to Edna by the end of next week we should have a good idea about how it is all going to work
After we sorted that we then had a bit of a dispute about her ownership of her keys. Her key is now in the key safe - but I have re-assured her she can get a duplicate cut and that Fosters won't mind.
Then a bit later I had to re-assure that Fosters hasn't changed, tnat he rflat is still there, and still her's.
An interesting delusion is that she said she had been told a lot of the ladies were moving out of Fosters. The implication was that there was something wrong with Fosters. But the people she thought had left had all gone to situations where tney had more regular care. I suspect that this is fueled by a deep down realisation that she may need more care than a care package can provide. Maybe she also realises that a care home would give her more company than she will get at Fosters.
I am so nervous about tommorrow. I just hope everything goes smoothly and that she DOES get home. But I am also nervous about what will happen when she is home and how many miles I am going to drive.
Well the aiting is nearly over. As I said to Edna by the end of next week we should have a good idea about how it is all going to work
Sunday 12 April 2009
A trip out
Edna came to us for dinner today. The dinner was fine, and she ate everything. Even had some cheese and biscuits for afters. But she said she wasn't feeling well. there was a lot of huffing and puffing and ouches. I'm not sure all of them were real. I suspect she is capable of putting things on when it suits her. But real or not, I don;t think it is coincidence that her health seems to be getting worse as the time comes for her to go home. On one level I don't think she wants to go home. This makes me wonder what will happen when she is home.
For the first time today Steve spoke to her on his own for a time. The only delusional thing I heard was that 'the others' went on a coach trip to Worcester and left at 7 o'clock this morning. Later on when I mentioned to Steve that her delusions seemed to be under control he told me that she seemed convinced it September (despite the fact that is is Easter) and that the hospital is getting ready for Xmas. This is clearly the same delusion she had when we were discussing apples . Worcester apples - I wonder if that was the trigger for the destination of the coach?
Does understanding make the delusions any easier to cope with? Probably not. I guess I need to be thankful she still knows who we all are.
For the first time today Steve spoke to her on his own for a time. The only delusional thing I heard was that 'the others' went on a coach trip to Worcester and left at 7 o'clock this morning. Later on when I mentioned to Steve that her delusions seemed to be under control he told me that she seemed convinced it September (despite the fact that is is Easter) and that the hospital is getting ready for Xmas. This is clearly the same delusion she had when we were discussing apples . Worcester apples - I wonder if that was the trigger for the destination of the coach?
Does understanding make the delusions any easier to cope with? Probably not. I guess I need to be thankful she still knows who we all are.
Friday 10 April 2009
Dreary reflection
Its a very dreary and grey day today. And I came away from the hospital feeling VERY down. That was partly because the lady in the bed opposite died just before I got there.
We drew up a shopping list for me to do on onday to set up her flat for her discharge on Tuesday (please please please don't let it be delayed!!) When I tried to reign her enthusiam in ( she wanted 1lb of tomatoes!) I got accused of taking over and a few moments later she was saying I had spoiled it for her. She also got a bit doiwn when we were discussing fruit saying she liked to see applies before she bought them. But I did point out that I was happy to take her shopping soi she COULD chose her own.
She got very confused (and got me very confused at one point) about the season . It was all to do with the availability of worcester apples and she said they were getting ready for Christmas (on the ward? or did she think she was at Fosters? ) That then led into the fact that the ward (definitley the ward) were mucking around with the mealtimes so they were having supper at breakfast. It isnt the first time she has had this delusion - but I can't see what would trigger it. Most times I can sort of understand how she gets her ideas. But today she really had me wondering.
I am frightened what is going to happen if she gets worse - or should that be when she gets worse? I am sitting here playing ' what if' games trying to imagine how things will go in the future - and its not a comfortable experience. I guess its the imminent discharge that has got me thinking. This time next week she will be home and I should be getting an idea about how it is all going to work out. But the waiting is getting to me
We drew up a shopping list for me to do on onday to set up her flat for her discharge on Tuesday (please please please don't let it be delayed!!) When I tried to reign her enthusiam in ( she wanted 1lb of tomatoes!) I got accused of taking over and a few moments later she was saying I had spoiled it for her. She also got a bit doiwn when we were discussing fruit saying she liked to see applies before she bought them. But I did point out that I was happy to take her shopping soi she COULD chose her own.
She got very confused (and got me very confused at one point) about the season . It was all to do with the availability of worcester apples and she said they were getting ready for Christmas (on the ward? or did she think she was at Fosters? ) That then led into the fact that the ward (definitley the ward) were mucking around with the mealtimes so they were having supper at breakfast. It isnt the first time she has had this delusion - but I can't see what would trigger it. Most times I can sort of understand how she gets her ideas. But today she really had me wondering.
I am frightened what is going to happen if she gets worse - or should that be when she gets worse? I am sitting here playing ' what if' games trying to imagine how things will go in the future - and its not a comfortable experience. I guess its the imminent discharge that has got me thinking. This time next week she will be home and I should be getting an idea about how it is all going to work out. But the waiting is getting to me
Thursday 9 April 2009
Up and down
Edna seems very up and down as regards her her general health, and the way dementia is affecting her.
Her general health is a bit iffy because her legs are bad. Some blisters burst so she has dressings on one leg. Also her diuretics have been increased - much to her annoyance. She has gone from one Frumil 40/5 to a splity dose of Furosemide 40mg am and 20mg early afternoon. She absolutley HATES having her water tablets increased.
Also when I got there she had an ordinary inhaler not an easibreathe. Initially her easibreathe was missing, but it turned up in her bag (wrapped in a bandage I think!) I'm guessing that she complained she couldn't find her inhaler so the ward staff gave her one from stock. Will she be any better keeping track of the inhaler when she is at home?
At one point while an auxilary was doing her obs she was saying that the water needed to be turned off before it overflowed - but she was looking at her trolley. So she was seeing something that I couldn't. Its been the first time for some time that she has had hallucinations. Not a good sign.
But she has remembered that she is going home next week. She started witterring on about groceries so I reminded her that she would having meals on wheels and she heaved a huge sigh of relief. So clearly she hadn't remembered that meals on wheels was part of the package. Or maybe she had remembered - but was worried it couldn't be organised - so maybe not memory loss but lack of trust/paranoia.
Really I am just marking time till Tuesday..........
Her general health is a bit iffy because her legs are bad. Some blisters burst so she has dressings on one leg. Also her diuretics have been increased - much to her annoyance. She has gone from one Frumil 40/5 to a splity dose of Furosemide 40mg am and 20mg early afternoon. She absolutley HATES having her water tablets increased.
Also when I got there she had an ordinary inhaler not an easibreathe. Initially her easibreathe was missing, but it turned up in her bag (wrapped in a bandage I think!) I'm guessing that she complained she couldn't find her inhaler so the ward staff gave her one from stock. Will she be any better keeping track of the inhaler when she is at home?
At one point while an auxilary was doing her obs she was saying that the water needed to be turned off before it overflowed - but she was looking at her trolley. So she was seeing something that I couldn't. Its been the first time for some time that she has had hallucinations. Not a good sign.
But she has remembered that she is going home next week. She started witterring on about groceries so I reminded her that she would having meals on wheels and she heaved a huge sigh of relief. So clearly she hadn't remembered that meals on wheels was part of the package. Or maybe she had remembered - but was worried it couldn't be organised - so maybe not memory loss but lack of trust/paranoia.
Really I am just marking time till Tuesday..........
Tuesday 7 April 2009
Things are taking shape.
Edna is - well not content - but accepting of the fact that she can't go home until a robust care package is in place. She even accepts that the district nurse needs to manage her new medication. She has even admitted that she needs help getting dressed - although that is the thing she finds hardest to accept.
I think she os still 'debating' with the nurses about chaging her clothes and what needs washing. But I did manage to get her to put clean ones on this afternoon . I think the nurse had tried to get her to put clean clothes on this morning and she refused. I feel I cheived something in getting her to chnage her clothes.
I have asked the sister if it would be OK for Edna to go out for a few hours on Easter Day so Edna will be coming to lunch with us - something she is very pleasaed about - and so am I. Hopefully she will get back into the a mindset that says she CAN go out and doesn't have to sit in her room all the time.
She was still full of stories of impossible events, still convinced someone is messing with her stuff. Apparnetly her teeth got lost today - and turned up on top of the bed. Her purse is now in the seat of her walker.
I have the feeling that Edna will be discharged just as my booking with QE comes to an end. NOT having any work may be useful while she gets settled into a new routine.
I think she os still 'debating' with the nurses about chaging her clothes and what needs washing. But I did manage to get her to put clean ones on this afternoon . I think the nurse had tried to get her to put clean clothes on this morning and she refused. I feel I cheived something in getting her to chnage her clothes.
I have asked the sister if it would be OK for Edna to go out for a few hours on Easter Day so Edna will be coming to lunch with us - something she is very pleasaed about - and so am I. Hopefully she will get back into the a mindset that says she CAN go out and doesn't have to sit in her room all the time.
She was still full of stories of impossible events, still convinced someone is messing with her stuff. Apparnetly her teeth got lost today - and turned up on top of the bed. Her purse is now in the seat of her walker.
I have the feeling that Edna will be discharged just as my booking with QE comes to an end. NOT having any work may be useful while she gets settled into a new routine.
Sunday 5 April 2009
The waiting game
Nothibg much can happen until the care package comes through so at the moment all I can do is wait. This is NOT god because although while she is in hospital I know she is safe, I am so anxious about what will happen when she gets home that I just want her to get home as quickly as possible when I will then feel more in control of the situation.
Trying to be objective the patch does seem to be working. She is not hallucinating, and is a much nicer person - but she is still delusional, and very forgetful.
Even though some of her delusions are quite amusing, it is worrying that she doesn't realise the absuidity of some of things she says. But that is obviously part of her illness. I feel there is a difference between the delusion that Diane is really Doris, and the delusion that all the mealtimes have been changed round so that supper is now served at breakfast time. I can imagine how she could mistake the time easily enough - but that fact that she doesn't have the cogniton to realise it is so absurd it can't be true is more worrying than the Doris fixation.
I have realised how little I know about Alzheimers and its progression. If I am to help her I really need to know
Trying to be objective the patch does seem to be working. She is not hallucinating, and is a much nicer person - but she is still delusional, and very forgetful.
Even though some of her delusions are quite amusing, it is worrying that she doesn't realise the absuidity of some of things she says. But that is obviously part of her illness. I feel there is a difference between the delusion that Diane is really Doris, and the delusion that all the mealtimes have been changed round so that supper is now served at breakfast time. I can imagine how she could mistake the time easily enough - but that fact that she doesn't have the cogniton to realise it is so absurd it can't be true is more worrying than the Doris fixation.
I have realised how little I know about Alzheimers and its progression. If I am to help her I really need to know
Saturday 4 April 2009
More health issues?
Steve and I went to see Edna today and almost the first thing she said was that she didn't know how the hospital expected to cope on her own at home. So I pointed out that was why social services were arranging for extra carers to come in every day. Then she said that her breathing was bad - and of course eneded with the mantra 'I know its never going to get any better'
I think she has mixed feelings about going home - although she was adamant she wanted to go home becasue so many of the patients in the ward are the noisy tupe. And I do sympathize with her on that.But she isn't champing at the bit to get out - which makes life easier for me. However I am concerned that other health issues may prolongue her stay in hospital.
She is still sadly totally convinced that her old neighbour (Diana) WAS really her old friend Doris who for some reason had decided to change her name, I didn't try to find out what she thought the day and year were.
Every time I leave the ward I feel like bursting into tears.
Steve has been doing some reading up on Alzheimers and has seen some evidence that apple juice (2 glasses a day) can help prevent it. So he is now drinking apple juice. I've decided it won't do me any harm. Seeing his grandmother so disabled physically and mentally is making him think hard about his health. He is now thinking actively about ways to makle sure he stays healthy. I came to that conclusion weeks ago.
I think she has mixed feelings about going home - although she was adamant she wanted to go home becasue so many of the patients in the ward are the noisy tupe. And I do sympathize with her on that.But she isn't champing at the bit to get out - which makes life easier for me. However I am concerned that other health issues may prolongue her stay in hospital.
She is still sadly totally convinced that her old neighbour (Diana) WAS really her old friend Doris who for some reason had decided to change her name, I didn't try to find out what she thought the day and year were.
Every time I leave the ward I feel like bursting into tears.
Steve has been doing some reading up on Alzheimers and has seen some evidence that apple juice (2 glasses a day) can help prevent it. So he is now drinking apple juice. I've decided it won't do me any harm. Seeing his grandmother so disabled physically and mentally is making him think hard about his health. He is now thinking actively about ways to makle sure he stays healthy. I came to that conclusion weeks ago.
Friday 3 April 2009
I'm not 87 am i?
That was the question Edna asked me today when I commneted that at 87 it wasn't too suprirsing she was showing sighns of old age (the symptom troubling her was a bit of dribbling). She didn't really beleive it was 2009 - even when I showed her as catalogue she had on her table was for 2008/09. She admitted she couldn't think of a reason why I would make anything like that up, but still didn't beleive me.
Then she wanted to know if I could take her to Lloyds next week when I wasn't working. I suggested that the ward wouldn't let me take her out . We them got into a very difficult discussiona about her feeling like a prisoner.
She was not at all good today.
I have come to the conclusion that whatever care package is put in place, it is almost bound to fail unless it includes close supervison of her medication. But I accept that car cannot be forced on her. I also accept that failure of the package may be the only thing that forces both Edna and social services to realise what the true situation is.
I just hope the failure isn;'t as catastrophic as when my Mothers care package failed and she spent all night lying on the floor next to her bed with a cut in her head unablew to call for help. And Mum didn't have dementia!!
Then she wanted to know if I could take her to Lloyds next week when I wasn't working. I suggested that the ward wouldn't let me take her out . We them got into a very difficult discussiona about her feeling like a prisoner.
She was not at all good today.
I have come to the conclusion that whatever care package is put in place, it is almost bound to fail unless it includes close supervison of her medication. But I accept that car cannot be forced on her. I also accept that failure of the package may be the only thing that forces both Edna and social services to realise what the true situation is.
I just hope the failure isn;'t as catastrophic as when my Mothers care package failed and she spent all night lying on the floor next to her bed with a cut in her head unablew to call for help. And Mum didn't have dementia!!
Thursday 2 April 2009
The care package
I finally contacted the social worker, and we arranged a meeting on the ward with Edna this afternoon. It was an interesting 45 minutes, To start off duirng the phone conversation it turned out they were unaware of the diagnosis. It also turned out niether they NOR Fosters reralised the medication was a patch - which is more complicated than the oral medication they thought she was having. So the plan for Fosters staff to prompt Edna to take her meds from the blister pack (whihc hasn't up till now anyway) is doomed from the start. However apart from that, I think the care package WILL work.
The Fosters staff will still f=do the morning call, doi her shopping, and do her laundry. She has alos agreed (for now) that they will do ALL her laundry. She will have meals on wheels. Then social services will vist at 2,00 and at 7,30 to check she is OK. They can also make an evening snack for her although she is very resitant to that idea.
I think its the best I am going to get for now. The package doesn't involcve me at all. Social services will do all three calls at the weekend when Fosters staff do not work which is a big improvemnet on what happenend after her discharge from West Heath - which seems like years ago but was just over 8 weeks ago.
I keep emphasising to Edna that she needs the help to nake sure she doesn't bounce straight back into hospital. I hope that will be all the incentive needed to get her to co-operate. If she doesn't I beleive Fosters WILL get stroppy with her and make acceptance of the care a condition of her continuing tenancy.
Edna ewmians to be convinced that she can't manage all her medication ecpecially the patch. But I think the social worker is going to get more details about that so the package may have to be altered to take account of that.
I asked the sister if she thought the pacth had made a difference. She though Edna was nuc less delusional - unti I told her ablout the baby in the cot in the corner, and the show the staff put on in the ward one evening where they all dressed up. I am still concerend that she seems so lucid other people are not taking the problems seriously. But there are rules about the Rivastigmine having to be administered by a carer. So I donlt they can avoid the issue. If they can well we will just have to see how it goes.
I feel very down, I am trying to look on the positive side of things - but have little faith things will work out. I am sure the care will be available - I just can't see Edna accepting it.
The Fosters staff will still f=do the morning call, doi her shopping, and do her laundry. She has alos agreed (for now) that they will do ALL her laundry. She will have meals on wheels. Then social services will vist at 2,00 and at 7,30 to check she is OK. They can also make an evening snack for her although she is very resitant to that idea.
I think its the best I am going to get for now. The package doesn't involcve me at all. Social services will do all three calls at the weekend when Fosters staff do not work which is a big improvemnet on what happenend after her discharge from West Heath - which seems like years ago but was just over 8 weeks ago.
I keep emphasising to Edna that she needs the help to nake sure she doesn't bounce straight back into hospital. I hope that will be all the incentive needed to get her to co-operate. If she doesn't I beleive Fosters WILL get stroppy with her and make acceptance of the care a condition of her continuing tenancy.
Edna ewmians to be convinced that she can't manage all her medication ecpecially the patch. But I think the social worker is going to get more details about that so the package may have to be altered to take account of that.
I asked the sister if she thought the pacth had made a difference. She though Edna was nuc less delusional - unti I told her ablout the baby in the cot in the corner, and the show the staff put on in the ward one evening where they all dressed up. I am still concerend that she seems so lucid other people are not taking the problems seriously. But there are rules about the Rivastigmine having to be administered by a carer. So I donlt they can avoid the issue. If they can well we will just have to see how it goes.
I feel very down, I am trying to look on the positive side of things - but have little faith things will work out. I am sure the care will be available - I just can't see Edna accepting it.
Wednesday 1 April 2009
Things moving maybe?
Finally today I have had contact from the social workers. Unfortunately they missed me but I have returned their call and left a message on the ansaphone, So hopefully I will get some information tommorrow.
Luckily Edna doesn't to remember that her discharge is being planned. She isn't fretting or threatening to discharge herself - even though her new next door neighbour is VERY noisy compared with 'Doris' aka Diana. He wnew neighour is called Dorotjhy or Dot so I am hoping that doesn't casue confusion.
I feel quite depressed today. I have realised I don't know HOW much of what she tells me about her day is true. Probably very little. I have this vision of her in her own litle world, taking small bits of what she sees around her and weaving into the world she creates for herself. For instance today she told me that one of the sisters had been doing some paperwork when somone came by and took the pins out of her hair Edna said that she hadn't been able to pin it up again becasue she had no pins. I had seen that the sister had her hair down when I came in - which is unusal. A very few monents later she came by with her hair up and both Edna and I commented on how quickly she had got it pinned up. In her reply she excused herself for having it down at all but said she wasn;t actually meant to be at work at all.
So I think Edna saw her with her hair down, and 'invented' the story she told me to fit her nice comfy world. If anyone with experience of Alzheimers is reading this, do please comment if you feel I am thinking along the right lines. I think Edna needs security and continuity so anything that doesn't fit she will try and make it fit her own personal paradigm.
She is still very paranoid about her purse. She is convinced one of the staff took it, becasue he 'found' it in a place where she had already looked when it went missing
I am in despair about how to help her keep track of things important to her when she goers home. There is NO way she will cope with her medication.
I just hope the social worker has some good news for me tommorrow
Luckily Edna doesn't to remember that her discharge is being planned. She isn't fretting or threatening to discharge herself - even though her new next door neighbour is VERY noisy compared with 'Doris' aka Diana. He wnew neighour is called Dorotjhy or Dot so I am hoping that doesn't casue confusion.
I feel quite depressed today. I have realised I don't know HOW much of what she tells me about her day is true. Probably very little. I have this vision of her in her own litle world, taking small bits of what she sees around her and weaving into the world she creates for herself. For instance today she told me that one of the sisters had been doing some paperwork when somone came by and took the pins out of her hair Edna said that she hadn't been able to pin it up again becasue she had no pins. I had seen that the sister had her hair down when I came in - which is unusal. A very few monents later she came by with her hair up and both Edna and I commented on how quickly she had got it pinned up. In her reply she excused herself for having it down at all but said she wasn;t actually meant to be at work at all.
So I think Edna saw her with her hair down, and 'invented' the story she told me to fit her nice comfy world. If anyone with experience of Alzheimers is reading this, do please comment if you feel I am thinking along the right lines. I think Edna needs security and continuity so anything that doesn't fit she will try and make it fit her own personal paradigm.
She is still very paranoid about her purse. She is convinced one of the staff took it, becasue he 'found' it in a place where she had already looked when it went missing
I am in despair about how to help her keep track of things important to her when she goers home. There is NO way she will cope with her medication.
I just hope the social worker has some good news for me tommorrow
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