I saw Mam for a couple of hours today. Her mood was very low and I gained the impression that she felt that her word problem was being exacerbated by the time she was spending in the unit. At times she was rather weepy. She seemed to be under the impression that she was coming home this Tuesday (22/01/08). When I tried to explain that before she comes home, there has to be a proper social services care package in place, she became quite upset. Primarily, she is very bored.
Upon checking with nurse Victoria, I learned that Tuesday is the date of her appointment with the Falls and Syncope unit at the RVI (this must be related to the heart issue). Are Falls and Syncope aware of Mam's poor ability to communicate and understand complex sentences? I am concerned about whether she will understand what is going on when she's at the RVI as she may not be able to follow what is being said to her. Can somebody offer to accompany her?
There is a later appointment with the Fracture Clinic on February 6th. If Mam is still being held in the unit by then, I think she will be in a very fragile state mentally.
Mam also said that a few nights ago, when trying to reach the komode, she had a slight fall. A nurse called Eric seems to have been able to assist her and moved the komode next to her bed. This does not make me feel at all optimistic about the regime once she comes home.
I also gained the impression that once home she intends to be coming downstairs during the daytime which is not what we have had in mind. If this home care thing is going to work, Mam is going to have to alter her routine to fit in. She may have to wait until carers have arrived to help her wash and dress - my concern is that she will in short order dismiss them, or at least start being rude to them, and revert to relying upon me to get things going in the morning. Mam needs these carers now.
Anyway, I got Mam set up to listen to the match against Bolton Wanderers and
she was happier about things.
She needs a new note book for writing messages down and some more pens.
Saturday, January 19, 2008
Wednesday, January 16, 2008
Meeting with Speech Therapist
Yesterday I met with Jill Summersall who is the Speech Therapist who has been investigating Mam's difficulty in expressing herself. I met her at the Speech Therapy of the General Hospital and was with her for about an hour as we discussed the nature of Mam's problem and how we may be able to help her communicate better.
Mam's condition seems to be quite rare - a progressive dysphasia (aka aphasia) which has gradually got worse rather than having been attributed to a single event. Jill wanted to know how long ago I noticed that Mam had a word problem and I mentioned how I picked up on her growing inability to finish crossword puzzles about seven or eight years ago - something that was about more than mere tiredness. Jill thought this was significant - a high level language ability starting to atrophy.
Jill does not think that Mam is "confused". She thinks, as do I, that Mam knows what she wants to say but that she is finding it difficult to retrieve the word: especially if the word is one she doesn't use often. Mam will frequently describe the elusive word - and this is something we should encourage her to do when she's in difficulty. i.e. rather than us trying to prompt her; getting Mam to tell us about the word. For example, her description of the word "cactus" involved Mam saying "plant in desert", "when you touch it, it feels hot".
Mam's Occupational Therapist, Bulbul, has noticed elements of "dyspraxia". The OT observed Mam when she was using the toilet and saw that Mam was doing certain of her personal hygiene tasks in the wrong order.
A number of things are making Mam's communication difficult.
One is her short term memory. In one test, a few sentences of a short story were read to her and Mam was incapable of remembering anything that had been said to her. Her old knowledge, on the other hand, seems to be fine.
Another aspect is a linguistic impairment - again, something I've noticed for some time. Mam can get short sentences. Longer, more grammatically complex sentences (subclauses, passive voice) are presenting her with problems.
Jill has suggested that we keep sentences short and to the point AND that where appropriate, we write down what it is that we want to say to her so that she can run through it several times (as her short term memory is so poor).
Another thing is her very poor hearing - she must be encouraged to use her hearing aid.
On some tests, Mam scored very highly indeed - 85%, when naming common nouns.
We need to check with Mam's consulting physician (Dr Shaw) to see whether Mam is going to be sent for some kind of brain scan (PET scan) which
would highlight which areas of her brain had been affected and how. It may be that there IS something like vascular dementia (caused by furring
of blood vessels in the brain) but in the absence of any evidence, we cannot be sure for the present moment.
Summary
Overall, Jill was quite upbeat about Mam's abilities but she was perplexed as to why it's taken so long for her problem to have been presented to the
health service.
Mam's problem will likely deteriorate - but probably quite slowly. The more we can do to connect with Mam, the slower that degeneration will be. The more
socially isolated she feels through her speech difficulty, the greater the problem will get.
Strategies to help Mam
(*) As I said above, when Mam is stuck, encourage her to describe the word.
(*) Write down important things that we want to say to her so that she can go through it several times.
(*) Playing dominoes or cards.
(*) Jigsaws. I mentioned that Mam used to do these a lot. Jill suggested starting her off with a smaller - say 250 piece - set with a nice picture and helping her
get started.
(*) A bit more company would be nice.
I was handed a questionnaire that Peter and I are to fill in.
Paul
Mam's condition seems to be quite rare - a progressive dysphasia (aka aphasia) which has gradually got worse rather than having been attributed to a single event. Jill wanted to know how long ago I noticed that Mam had a word problem and I mentioned how I picked up on her growing inability to finish crossword puzzles about seven or eight years ago - something that was about more than mere tiredness. Jill thought this was significant - a high level language ability starting to atrophy.
Jill does not think that Mam is "confused". She thinks, as do I, that Mam knows what she wants to say but that she is finding it difficult to retrieve the word: especially if the word is one she doesn't use often. Mam will frequently describe the elusive word - and this is something we should encourage her to do when she's in difficulty. i.e. rather than us trying to prompt her; getting Mam to tell us about the word. For example, her description of the word "cactus" involved Mam saying "plant in desert", "when you touch it, it feels hot".
Mam's Occupational Therapist, Bulbul, has noticed elements of "dyspraxia". The OT observed Mam when she was using the toilet and saw that Mam was doing certain of her personal hygiene tasks in the wrong order.
A number of things are making Mam's communication difficult.
One is her short term memory. In one test, a few sentences of a short story were read to her and Mam was incapable of remembering anything that had been said to her. Her old knowledge, on the other hand, seems to be fine.
Another aspect is a linguistic impairment - again, something I've noticed for some time. Mam can get short sentences. Longer, more grammatically complex sentences (subclauses, passive voice) are presenting her with problems.
Jill has suggested that we keep sentences short and to the point AND that where appropriate, we write down what it is that we want to say to her so that she can run through it several times (as her short term memory is so poor).
Another thing is her very poor hearing - she must be encouraged to use her hearing aid.
On some tests, Mam scored very highly indeed - 85%, when naming common nouns.
We need to check with Mam's consulting physician (Dr Shaw) to see whether Mam is going to be sent for some kind of brain scan (PET scan) which
would highlight which areas of her brain had been affected and how. It may be that there IS something like vascular dementia (caused by furring
of blood vessels in the brain) but in the absence of any evidence, we cannot be sure for the present moment.
Summary
Overall, Jill was quite upbeat about Mam's abilities but she was perplexed as to why it's taken so long for her problem to have been presented to the
health service.
Mam's problem will likely deteriorate - but probably quite slowly. The more we can do to connect with Mam, the slower that degeneration will be. The more
socially isolated she feels through her speech difficulty, the greater the problem will get.
Strategies to help Mam
(*) As I said above, when Mam is stuck, encourage her to describe the word.
(*) Write down important things that we want to say to her so that she can go through it several times.
(*) Playing dominoes or cards.
(*) Jigsaws. I mentioned that Mam used to do these a lot. Jill suggested starting her off with a smaller - say 250 piece - set with a nice picture and helping her
get started.
(*) A bit more company would be nice.
I was handed a questionnaire that Peter and I are to fill in.
Paul
Thursday, January 10, 2008
Thursday 10th January
Two phonecalls this morning.
1
The first was from a lady called Bulbul Sandyford who is Mam's Occupational Therapist.They would like to do a home assessment on Friday 18th January at around 10.00am.
This would involve Mam being brought to the house for a period of about 30-45 minutes in which she would be observed negotiating the home environment and doing some of her day to day tasks. After this she will be taken back to the hospital. Her physiotherapist will be there, too.
I'm assuming that you, Peter, can be in the house for this. Is that OK?
2
The second call was from Jill Summersall who is Mam's Speech Therapist. She would like Peter and myself to meet her at 4.00pm on Tuesday 15th January in which she can discuss Mam's progressive dysphasia problem and about strategies we can use to communicate with Mam more effectively. She wanted to know my own thoughts about the nature of Mam's problem and when we first noticed things were going wrong with her language processing.
One thing that's making Mam's communication more difficult is that she is almost completely deaf and doesn't wear her hearing aid. They are trying to be as firm with her as they can be in order to get Mam to wear the hearing aid. On some counts, Mam scores quite well and Jill doesn't think that Mam's actually that confused. There is, however, a problem with her assimilation of information. In one exercise, Jill read Mam a short story and then asked Mam how much she'd taken in; Mam replied that she'd forgotten it all.
She (Jill) doesn't, however, think that Mam is "demented". But as the problem is classed as "progressive" then I would guess that it is going to get worse.
She also mentioned that the OT people had noticed that Mam wasn't cleaning herself properly after using the toilet.
She also mentioned that a brain scan was being planned for Mam.
That's all for now. I am suffering from this nasty bug that's doing the rounds and am off work. I can't go into the unit until tomorrow at the earliest lest I infect the patients.
Two phonecalls this morning.
1
The first was from a lady called Bulbul Sandyford who is Mam's Occupational Therapist.They would like to do a home assessment on Friday 18th January at around 10.00am.
This would involve Mam being brought to the house for a period of about 30-45 minutes in which she would be observed negotiating the home environment and doing some of her day to day tasks. After this she will be taken back to the hospital. Her physiotherapist will be there, too.
I'm assuming that you, Peter, can be in the house for this. Is that OK?
2
The second call was from Jill Summersall who is Mam's Speech Therapist. She would like Peter and myself to meet her at 4.00pm on Tuesday 15th January in which she can discuss Mam's progressive dysphasia problem and about strategies we can use to communicate with Mam more effectively. She wanted to know my own thoughts about the nature of Mam's problem and when we first noticed things were going wrong with her language processing.
One thing that's making Mam's communication more difficult is that she is almost completely deaf and doesn't wear her hearing aid. They are trying to be as firm with her as they can be in order to get Mam to wear the hearing aid. On some counts, Mam scores quite well and Jill doesn't think that Mam's actually that confused. There is, however, a problem with her assimilation of information. In one exercise, Jill read Mam a short story and then asked Mam how much she'd taken in; Mam replied that she'd forgotten it all.
She (Jill) doesn't, however, think that Mam is "demented". But as the problem is classed as "progressive" then I would guess that it is going to get worse.
She also mentioned that the OT people had noticed that Mam wasn't cleaning herself properly after using the toilet.
She also mentioned that a brain scan was being planned for Mam.
That's all for now. I am suffering from this nasty bug that's doing the rounds and am off work. I can't go into the unit until tomorrow at the earliest lest I infect the patients.
Monday, January 7, 2008
Mam: update January 7th
Mam looking a lot better when I went in this evening.
I filed her nails and brought back some dirty washing.
She was pleased about the "pink half dressing gown" as well.
Generally she was feeling a lot better today and wasn't in as much pain. I didn't stay too long - only about half and hour or so.
I chatted to nurse Sheila about a few things which I'll go into later. She did suggest looking
into PoA arragements to cover respectively her finances and her social service care - it seems PoA can be differentiated into those two types. A lot of Mam's activities will have to be done by proxy in future. I hope that there is a possibility of her returning home but a lot of this depends on what the Occupational Therapy/Health people say when they assess her.
We must ensure that there is no repetition of the previous "assessment" that wasn't. Mam was let down, in my view, by the Orthopaedic Discharge Team by their adjuging that she didn't need a bathing assistant when it was clear that such a thing was a necessity.
Sheila suggested that we contact AgeConcern for advice.
I filed her nails and brought back some dirty washing.
She was pleased about the "pink half dressing gown" as well.
Generally she was feeling a lot better today and wasn't in as much pain. I didn't stay too long - only about half and hour or so.
I chatted to nurse Sheila about a few things which I'll go into later. She did suggest looking
into PoA arragements to cover respectively her finances and her social service care - it seems PoA can be differentiated into those two types. A lot of Mam's activities will have to be done by proxy in future. I hope that there is a possibility of her returning home but a lot of this depends on what the Occupational Therapy/Health people say when they assess her.
We must ensure that there is no repetition of the previous "assessment" that wasn't. Mam was let down, in my view, by the Orthopaedic Discharge Team by their adjuging that she didn't need a bathing assistant when it was clear that such a thing was a necessity.
Sheila suggested that we contact AgeConcern for advice.
Sunday, January 6, 2008
Mam's condition
OK, I thought setting up a blog may be a good idea to enable us to swap ideas more readily when talking about Mam's aftercare. It's a very hard time. I will have to configure the blog so that it only accepts postings (at least on the subject of Mam's health) by us lot. This may take a while to sort out so be aware that, the web being what it is, some smart-alec may be able to post tasteless and offensive remarks about what is to us a very sensitive subject.
I saw Mam this evening (Sunday) and she wasn't at all well but that place is the best place she can be at the moment. She's been isolated due to her diarrhoea and tummy upset. Her abdomen is still swolen, though not seeming quite so impacted. She's in pain with her lower back and she's uncomfortable in the trousers that she's wearing. She's requesting we buy a size 12 but this is because her swollen abdomen is causing her waistband to pinch.
She was able to read the parish bulletin out loud quite easily and understand the content. Funnily enough, she was able to pronounce what she was reading right first time.
It's late and I've not had much sleep.
Hope this is useful for you to know.
Paul
I saw Mam this evening (Sunday) and she wasn't at all well but that place is the best place she can be at the moment. She's been isolated due to her diarrhoea and tummy upset. Her abdomen is still swolen, though not seeming quite so impacted. She's in pain with her lower back and she's uncomfortable in the trousers that she's wearing. She's requesting we buy a size 12 but this is because her swollen abdomen is causing her waistband to pinch.
She was able to read the parish bulletin out loud quite easily and understand the content. Funnily enough, she was able to pronounce what she was reading right first time.
It's late and I've not had much sleep.
Hope this is useful for you to know.
Paul
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