Mum is having her check up/follow up appointment tomorrow, and today I have felt the strain and the anxiety and am not looking forward to the appointment as Mum is declining. People do not understand how I feel as you probably have all already experienced. At the last appointment the consultant said that Mum is at the start of the moderate stage already only being told she was at the start of the mild stage 6 months previous, I can only see what she scores tomorrow, I can't help but let the score control how I feel, it is hard to say the least. I try to be strong but she is my Mum and it hurts and it feels like it is tearing me apart inside. Mum is oblivious to what she has got and often says that she thinks her memory is getting better bless her. I have to put a big smile on my face so she doesn't think things are that bad, I don't want her to be upset and worry. Thank you for listening, I hope you are all OK xxxxxxx
Mums check up
- Thread starter MinnieMouse
- Start date
Hi MM, hope all goes well tomorrow, will be thinking of you,my mum had her check up 2 weeks ago, me I was the one in bits as mum had decided she did not need to go as it was a "waste of time" - yep she did go
had a "nice time" then was looking forward to going home for tea and cake......I kept on smiling
Hugs
Chris x
had a "nice time" then was looking forward to going home for tea and cake......I kept on smiling Hugs
Chris x
Arh bless her the good thing is once I have gone she will have no real memory of what has happened. I think it just hits you more on the days they have their check ups as you see them struggle and can't answer any questions. Once Mums score gets closer to the severe stage I am going to ask the doctor to stop doing the memory test. That is what is stressing me out, wish he wasn't doing that really but know it is to see where Mum is up to. Thank you for replying, it gives me comfort to know people take the time to read and can really understand so thank you, take care xxxx
the good thing is once I have gone she will have no real memory of what has happened. I think it just hits you more on the days they have their check ups as you see them struggle and can't answer any questions. Once Mums score gets closer to the severe stage I am going to ask the doctor to stop doing the memory test. That is what is stressing me out, wish he wasn't doing that really but know it is to see where Mum is up to. Thank you for replying, it gives me comfort to know people take the time to read and can really understand so thank you, take care xxxx
Arh bless her
I feel for you MinnieMouse.
I would really try hard not to get too hung up on 'where Mum is up to'. These stages are not written in stone, there are many different sets of stages, 'mild', 'moderate' - they're just words. You know what Mum can and can't do and can assess this much better than any test. It's obvious that you are looking after her really well - she 'thinks she is getting better', well that's no problem and it's much better for her to feel this than that she is getting worse (which is what the tests will keep telling her - and you).
I'd talk over your feelings with the consultant and ask 'What is the point?'. I bet they don't have an answer.
Hi
I do feel for you but often think the carer, rather than the one being cared for has these feeling. Thankfully where we are, they don't keep doing the MMSE tests once a diagnosis is made. For me, and I know others don't feel the same, I live with her 24/7 so I don't need a score as I can see her deteriorating and it breaks my heart to see MIL not know the answers when the MMSE is being done. I also feel we have hardened our hearts
We went to see the Psychiatrist yesterday and this is what happened
I played the game as regards talking about mums dementia openly. I told the absolute truth
Dr asked mum how she was. Mum said very well indeed
Dr asked mum where she is living, Mum said at home but staying a little while with her son and me
Dr looked at me and asked is she with you temporarily or permanently. I said permanently she is never going back to her flat (no comment or funny looks or comments from Mum as if she was on another planet!)
Dr asked Mum what do you do all day. Mum says paint and do my art. Dr looks at me and I said no that's not true she has not done that for years
Dr asked Mum does she wash and dress herself. Oh yes mum said I certainly do. I said no she does not. Dr asked does she need prompting or do you do it. I said some prompting and other areas of her body she doesn't know exist so I have to do it . I said I have to take her clothes from her every night otherwise she would put on the same dirty clothes day after day and they are very smelly
Dr asked are you getting any help. I said she gets attendance allowance and we have applied for council tax reduction and don't pay for TV licence as mum has it free
Dr asked about Power of Attorney. Yes I said Power of Attorney done
Dr asked was I getting a carers assessment. Yes I said I have requested one
Mum is hopefully going to cognitive classes but is on a waiting list and will only go for a little while as there are so many on the waiting list.
There are no more visits to the memory clinic, so she has been discharged. I said well there is no point as we live with her dementia 24/7 and we don't need her to be assessed as we can see she is getting worse
On the way home mum says 'well when I get home I will have to get the bus or walk as there will be no one to drive me around! Yes I said or you can just sit in doors. Priceless!!!
I do feel for you but often think the carer, rather than the one being cared for has these feeling. Thankfully where we are, they don't keep doing the MMSE tests once a diagnosis is made. For me, and I know others don't feel the same, I live with her 24/7 so I don't need a score as I can see her deteriorating and it breaks my heart to see MIL not know the answers when the MMSE is being done. I also feel we have hardened our hearts
We went to see the Psychiatrist yesterday and this is what happened
I played the game as regards talking about mums dementia openly. I told the absolute truth
Dr asked mum how she was. Mum said very well indeed
Dr asked mum where she is living, Mum said at home but staying a little while with her son and me
Dr looked at me and asked is she with you temporarily or permanently. I said permanently she is never going back to her flat (no comment or funny looks or comments from Mum as if she was on another planet!)
Dr asked Mum what do you do all day. Mum says paint and do my art. Dr looks at me and I said no that's not true she has not done that for years
Dr asked Mum does she wash and dress herself. Oh yes mum said I certainly do. I said no she does not. Dr asked does she need prompting or do you do it. I said some prompting and other areas of her body she doesn't know exist so I have to do it . I said I have to take her clothes from her every night otherwise she would put on the same dirty clothes day after day and they are very smelly
Dr asked are you getting any help. I said she gets attendance allowance and we have applied for council tax reduction and don't pay for TV licence as mum has it free
Dr asked about Power of Attorney. Yes I said Power of Attorney done
Dr asked was I getting a carers assessment. Yes I said I have requested one
Mum is hopefully going to cognitive classes but is on a waiting list and will only go for a little while as there are so many on the waiting list.
There are no more visits to the memory clinic, so she has been discharged. I said well there is no point as we live with her dementia 24/7 and we don't need her to be assessed as we can see she is getting worse
On the way home mum says 'well when I get home I will have to get the bus or walk as there will be no one to drive me around! Yes I said or you can just sit in doors. Priceless!!!
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Hi MM,
It's so hard witnessing the decline. I fail to see the point of testing each time, if diagnosed, then that is all that's needed. I would strongly urge you to refuse the test.
I'm not in the UK and don't know the system but is it a medical check-up or something else? Is it essential in order to receive services or assistance?
These tests are so painful, my dad had one only, and we both cried. He cried because he was aware he should have known what jobs he had held, I cried in agony because he struggled and felt distressed. That was at his first visit to a geriatrician, to obtain a definitive diagnosis.
My query is, if diagnosed as having a dementia, their answers may therefore be less than accurate, so why not simply listen to the carer?
I made an arrangement with the geriatrician where I send an email about a week before, outlining the current situation, what he is no longer able to do, how much help he needs, any problems or concerns. It avoided saying things that might upset or embarrass Dad and gave her a clear picture of his stage. It's also a great way to keep a record of his progress and make comparisons. Today was our last visit because Dad can't cope with going out any more so the dr said we can call her with problems and so on.
I found the email to be so much easier so perhaps you could suggest it if possible.
As said by others, try to focus on the fact your mum is content and positive, they are wonderful qualities and show how well you're doing. If you still feel overwhelmed by everything perhaps you should consider a carers' support group or some counselling, or just keep posting here to get it off your chest.
Take care, Stephanie, xxx
It's so hard witnessing the decline. I fail to see the point of testing each time, if diagnosed, then that is all that's needed. I would strongly urge you to refuse the test.
I'm not in the UK and don't know the system but is it a medical check-up or something else? Is it essential in order to receive services or assistance?
These tests are so painful, my dad had one only, and we both cried. He cried because he was aware he should have known what jobs he had held, I cried in agony because he struggled and felt distressed. That was at his first visit to a geriatrician, to obtain a definitive diagnosis.
My query is, if diagnosed as having a dementia, their answers may therefore be less than accurate, so why not simply listen to the carer?
I made an arrangement with the geriatrician where I send an email about a week before, outlining the current situation, what he is no longer able to do, how much help he needs, any problems or concerns. It avoided saying things that might upset or embarrass Dad and gave her a clear picture of his stage. It's also a great way to keep a record of his progress and make comparisons. Today was our last visit because Dad can't cope with going out any more so the dr said we can call her with problems and so on.
I found the email to be so much easier so perhaps you could suggest it if possible.
As said by others, try to focus on the fact your mum is content and positive, they are wonderful qualities and show how well you're doing. If you still feel overwhelmed by everything perhaps you should consider a carers' support group or some counselling, or just keep posting here to get it off your chest.
Take care, Stephanie, xxx
Thank you everyone for replying, I have literally just read them. Everything was surprisingly positive today, Mum got the same score and he said that the tablets are clearly helping her and he noticed how calm amd relaxed and happy she was today compared to last time and I asked compared to his other patients, how long does he think roughly Mum will stay like this for and he said 2 years, I know everyone is different, but I was pleased with that as I thought with the tablets only having an effect for 12 months that come Jan she would be in a bad place. So we can get on with life as best as we can now and not worry, thanks again everyone, hope you are all OK xxxxxxx
and I asked compared to his other patients, how long does he think roughly Mum will stay like this for and he said 2 years, I know everyone is different, but I was pleased with that as I thought with the tablets only having an effect for 12 months that come Jan she would be in a bad place. So we can get on with life as best as we can now and not worry, thanks again everyone, hope you are all OK xxxxxxxI do so agree. I know some people aren't bothered by them, but some sufferers find these tests terribly distressing and humiliating. So much is piously talked about 'dignity in dementia' and yet people are routinely put through an abjectly humiliating exercise which often achieves nothing but a box-ticking 'score'. Even if people forget quickly, they've still been distressed, and so often it's a case of 'for what?'
My husband had his 6 monthly check up today. A couple of weeks ago I wrote a long letter to the Memory Clinic doctor detailing how he is and what he and can't do. In this way I don't need to answer questions in front of him.
I also asked in the letter whether he could stop doing the MMSE tests. He's been doing them twice a year for 12 years now. I used to stress about the scores as I knew that the prescription of medication was done on the basis of the scores. There was a cut off point below which the medication was stopped. Bill's last score was so low the doctor wanted to change the medication but I argued my case. Today she didn't do the MMSE and she is going to ask for the GP to continue prescribing the Exelon.
I also asked in the letter whether he could stop doing the MMSE tests. He's been doing them twice a year for 12 years now. I used to stress about the scores as I knew that the prescription of medication was done on the basis of the scores. There was a cut off point below which the medication was stopped. Bill's last score was so low the doctor wanted to change the medication but I argued my case. Today she didn't do the MMSE and she is going to ask for the GP to continue prescribing the Exelon.
MM, so glad you had a positive visit and are feeling more relaxed. I firmly believe we need to try and be just like our loved ones, there is only now, yesterday is forgotten and tomorrow is unknown. One day at a time, and no guesses about what time we may have left, it is out of our hands. Enjoy every day you get, and if it's a bad one, be just like the person for whom you care, try to forget it very quickly.
Thanks for your update and take care.
Good for you, Izzy, ultimately we know the person best and it is so appalling that they are subjected to the tests purely for the sake of money. I assume it's the same over there as in Australia, since the government subsidises these medications and we don't pay the full cost, they want to be sure they are working or they won't cover them any longer.
Witzend, agree with you 100%, I think more credence should be given to those who are caring for them, what do we have to gain from rorting the system? Why would we want to continue the medication if there was no benefit?
Take care everyone, xxx
Thanks for your update and take care.
Good for you, Izzy, ultimately we know the person best and it is so appalling that they are subjected to the tests purely for the sake of money. I assume it's the same over there as in Australia, since the government subsidises these medications and we don't pay the full cost, they want to be sure they are working or they won't cover them any longer.
Witzend, agree with you 100%, I think more credence should be given to those who are caring for them, what do we have to gain from rorting the system? Why would we want to continue the medication if there was no benefit?
Take care everyone, xxx
Woo hoo!! That sounds great. We have them subsidised, but if you are a pensioner, the price is very minimal, about $5, and then they record how many total prescriptions are paid for, a safety net, and once you've spent $500 as a family, they are free for the remainder of the calendar year. Then it starts up again the next year. There is also a safety net for non-pensioners, it's $1000 I think.
How on earth do they cover the entire cost of the scripts? Is it just for pensioners or are you referring to dementia meds only?
Prescriptions are free here in Wales too that is for everyone/everything. Only in England do people have to pay for prescriptions. Funny system for such a small country. Even dafter is that we have to pay 5p per carrier bag in Wales but our nearest supermarket is just over the border in England where they are free. Wonder who thinks these things up? Hope all is well with you.
Jan xxx
Jan xxx
Sorry Minnie
Replied to lilysmybabypup's last thread didn't mean to ignore your post. For what it's worth I don't think these tests are that valid really. On a good day I can have a sort of conversation with my Mum (even on the phone) and on other days she is on another planet so obvsiously the day of the test it would depend on how she was.
Replied to lilysmybabypup's last thread didn't mean to ignore your post. For what it's worth I don't think these tests are that valid really. On a good day I can have a sort of conversation with my Mum (even on the phone) and on other days she is on another planet so obvsiously the day of the test it would depend on how she was.
That's just what I did before mum's visits too Izzy. I couldn't bear to keep contradicting mum's answers as 1954 had to, she felt bad enough that she couldn't remember things as it was. While she did the memory tests I would just sit there, smiling encouragingly and crying inside as she struggled. After a couple of sessions of doing that, her psychiatrist used to come and make a cup of tea with me while he asked how I was coping, and then went back and did the tests with her on her own. When I came back in, he always said to me, in front of her that she'd done very well, dear man
even though she was getting less each time. I know that she has had one in the nursing home since she's been there and they asked if I would like to be there. I said I wouldn't and explained why.I really don't like the counting back from 100 subtracting 7 each time, never been any good at maths
The only reason I was honest is because on the first visit to the memory clinic south of the Thames they told me they did things differently to where the diagnosis was done which was North of the Thames
I did not feel comfortable saying anything in front of MIL and must have been making faces to try get the psychiatric nurse that what MIL was saying was not the truth also I did not want to say things in front of MIL
Horror of horrors the nurse said to me have you had a stroke? I said not that I know of! He said your mouth movement is very strange!
He then told me they say everything with the patient there no matter what needs to be said because he said your MIL will not remember anything by the time she walks out of the room. So that is the reason I said what I did when we went to the consultant. This time I did not feel so uncomfortable because yes MIL forgot everything by the time the door was closed by saying 'well that went well didn't it?'
I did not feel comfortable saying anything in front of MIL and must have been making faces to try get the psychiatric nurse that what MIL was saying was not the truth also I did not want to say things in front of MIL
Horror of horrors the nurse said to me have you had a stroke? I said not that I know of! He said your mouth movement is very strange!
He then told me they say everything with the patient there no matter what needs to be said because he said your MIL will not remember anything by the time she walks out of the room. So that is the reason I said what I did when we went to the consultant. This time I did not feel so uncomfortable because yes MIL forgot everything by the time the door was closed by saying 'well that went well didn't it?'
I hope you don't think I was getting at you 1954, I was sympathising, having had to do that myself; I think it's wrong for them to expect that of you. My friend has the same issue with her mum, exactly the same scenario, and when she has to contradict her, her mum gives her a look that would shrivel a salted snail.....
