Dooesn't this nightmare ever stop!

[SueShell]

Been in to see Mum in hospital. Apparently she had memory test and passed. The medical profession need to celebrate that my Mum is the only person in the world with Alzheimer's whose memory has improved. What an utter load of rubbish. How old are you mum? 72, wrong! How old am I? 50, wrong. Your boyfriend is 80 (that made me laugh) wrong! Where do you live Haywood Court, wrong. Where are you now, in hospital I think. What hospital,I don't know. A little girl keeps visiting me, does she Mum. Yeah right, she's passed the test, nothing wrong with her memory.

Also another best interests meeting next week. I assume to try and work their way out of putting her into a CH. Now do I refuse to go to the meeting, or do I go and refuse to give them her keys?
Thank you Sue

 

[PeggySmith]

Sue, I'm not sure you can refuse to give them her keys. I would simply hand them in and walk away if you can. I know you live next door but it's important for your own health that you back off now and let the "professionals" deal with Mum.

Are you feeling any better now? Hope Christmas was at least restful.

PS which test did they use? Can you ask for the result?

 

[Onlyme]

I would go and ask who carried out the memory test. If not the mental health team with a full test then why not? Asking her 6 questions does not count.

I was told MIL passed the test but they needed to check a few details. How many children does she have -she says 3? (1), how many grandchildren 6 (2), how many gt grandchildren 4 (0 as grandchildren are under 16). They had passed her fit on these questions! After the Dr spoke to us she was retested and failed but they told us she seemed so certain of the answers.

At that point we questioned just what training these Dr had as they seemed to know nothing about dementia.

 

[marionq]

I have no faith in these tests either. My husband's score improved while his actual memory nosedived. He does not know how many grandchildren we have (5) but will recognise them kind of when they appear in front of him. He never knows what day it is even though the calendar clock is staring him in the face and has no recollection of moving into this house four years ago. And so it goes on.....

The mental health profession need to wake up to the uselessness of their own tests.

 

[angelface]

Sorry it gets no better. Suspect they think mum still has capacity to decide where she wants to live, so when SS say do you want to go into care, and mum says no, SS will accept it.
I think you have to go to this meeting, but could you get someone from Bromley Alz or Carers to go with you? If it was me, I think I would deny all knowledge of keys, saying, what, hasn't mum got them with her?
After all, if you are not on good terms with mum, why would she give you her keys.I know I'm awful, but you get the idea?

 

[Sue J]

Dementia is not just memory loss, I totally agree a short memory test taken on one day is a useless test to assess ones needs and abilities.

I agree with Angel face and deny knowledge of the keys. I went through this years ago with an elderly friend they asked her did she want to go home, of course she did they had not shown her any other option, the fact that the second night at home she fell and lay on the floor all night, didn't the first as she was too exhausted, didn't seem to enter their heads so of course it meant another admission and care home.

I really feel for you Sueshell, stand your ground, we're behind you.
Best
Sue

 

[PeggySmith]

If it was me, I think I would deny all knowledge of keys, saying, what, hasn't mum got them with her?
After all, if you are not on good terms with mum, why would she give you her keys.

Genius.

 

[Insomniac]

SueShell, this is appalling - but sadly not surprising! I have absolutely no faith in the medical profession when dealing with dementia. They look for the easiest option every time in my opinion. Presumably they already know you have the keys, so denying you have them may be pointless? I would be inclined to not go to the meeting, other to pass on the keys, and let them get on with it because it sounds like they are pretty determined what is going to happen. I think, equally, you need to dig your heels in, and refuse to have ANYTHING to do with support as they clearly take no notice of what you say. I do appreciate that will be incredibly hard for you , and again I would share your decision with your GP.

I think what you are being put thru is intolerable and if it was me I think I would be heading to the nearest airport with my passport (believe me I've been close!)!

Hoping this is resolved for you soon.



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[Delphie]

I'm so cross for you and agree that yes, deny all knowledge of the keys.

My mum's consultant (and SW and CPN) were great but a visiting consultant questioned the Alzheimer's diagnosis because she apparently made good eye contact and recited a poem. Oh well then, isn't that great! But the hard facts at the same time were that she didn't always know me (only child) or her grandsons, was getting lost, was toiletting in the garden, hadn't washed in months, would've regularly eaten visibly mouldy food had I not removed it from her fridge, and had Olympic standard delusions on a daily basis, including arming herself with a huge kitchen knife because she thought my husband (who she didn't know from Adam by that point) was trying to kill her. She was also going to be sectioned due to self neglect. I thank my lucky stars (and hers) that the hands on professionals we had involved with us looked beyond the superficial.

Good luck.

 

[angecmc]

Hi Sue, this really is becoming a sorry saga, I would just keep standing your ground, as others have said don't go to the meeting remind them you are no longer able to care so it is up to them to deal with everything to do with Mum, remind them that you are suffering a nervous breakdown as diagnosed by your GP. Don't get agreeing to do shopping, washing etc as they will offload everything to you. Tell them you are now just her next door neighbor, you must put yourself first.xx

Ange

 

[henfenywfach]

Been in to see Mum in hospital. Apparently she had memory test and passed. The medical profession need to celebrate that my Mum is the only person in the world with Alzheimer's whose memory has improved. What an utter load of rubbish. How old are you mum? 72, wrong! How old am I? 50, wrong. Your boyfriend is 80 (that made me laugh) wrong! Where do you live Haywood Court, wrong. Where are you now, in hospital I think. What hospital,I don't know. A little girl keeps visiting me, does she Mum. Yeah right, she's passed the test, nothing wrong with her memory.

Also another best interests meeting next week. I assume to try and work their way out of putting her into a CH. Now do I refuse to go to the meeting, or do I go and refuse to give them her keys?
Thank you Sue

Hi! Im so sorry that you are still being challenged all the way.
I did some research online and the memory test are on there to be printed off...there are guidlines..and my point is this...at the end of the explanations of scoring..and these forms are for clinicians only..it states that when calculating scoring the test isnt enough on its own..that the clincian should take the families observations and opinions before diagnosing as its part of the whole thing.....you can print these off or just read for yourself...any doctor weve dealt with has said that our opinion is essential....think again youve got cause to compain...how can medical staff be getting things so wrong???.

My dad argues daily he could walk to the moon and back...and everyday he drops to one side due to his dlb...but he still argues that he can walk miles...just because he says hes fine ....doesnt mean he is....hes not aware he drops....
So my comments to staff are....if you cant noticed these things and your not willing to take his carers word for it...then your in the wrong job...and the new care act has been a total waste of time.
Keep strong...best wishes

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[Homerose]

Hi Sue, I am new on here so haven't read all of your previous posts so apologies if I'm mentioning things you've heard or tried before. My circumstances are that I have been trying to care for 58 year old mum whilst my step dad is in hospital. I have found it challenging to say the least. However my day job, although I've been signed off for past couple of weeks, is a housing related support worker for older people. It's helped me know my way round services etc. Have you had a carers assessment? If not, request one, you need to tell them you cannot carry on your caring role, although it sounds as if you have already told them. Do you have anyone advocating on your behalf? This is part of my role and I'm sorry if there is no one to do this for you. Remember social services assess everything in terms of risk, low, moderate, substantial or critical. If I was you I would try and highlight all the potential risks both to your mum's safety and your health that could be posed by her going home. If it was me I would be inclined to go to the best interest meeting but don't be afraid to let them see how it is affecting you. As you have broken down infront GP and hospital staff I'm sure that if they see this first hand they will have to take action. Remember a best interest decision is exactly that, even if your mum can answer she wants to go home, does not mean she has capacity to fully understand that decision and the possible consequences or affects on others of doing so. If she doesn't understand consequences it demonstrates lack of capacity on that decision. Remember risk, risk, risk.
I'm sorry to hear about your situation. Just 24hrs of being on tp, in some ways it's reassuring to know there are other people facing these challenges but depressing there are so many of us.


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[stanleypj]

Been in to see Mum in hospital. Apparently she had memory test and passed. The medical profession need to celebrate that my Mum is the only person in the world with Alzheimer's whose memory has improved.

This is appalling, and the other examples also suggest that these tests are worse than useless when administered in the ways described.

I think it worth pointing out though, for the benefit of anyone reading this thread who isn't aware of the fact, that as everyone is different, particularly perhaps in the way that their dementia progresses, it is perfectly possible for someone's scores to vary, up and down, even with a properly administered test. An example would be where the first test was taken on a particularly bad day and a later test was taken when the person was actually performing better.

Actually, many PWD are no different from other people in this respect.

 

[Jenni1970]

Hi Sue,

My greatest sympathy I have too experienced the sheer disbelief and frustration with 'the professionals'.
My mothers GP had told me prior that the overall recommendation for her best interests meeting was was for her to remain in her home as she could still cope - the thing was we couldn't cope, as a family we were at breaking point, we had four care calls a day plus neighbours, and two relative calls a day all helping and watching out for her.
So I decided at my mothers best interest meeting to pass around a contact sheet for all 'the professionals' involved and asked to their surprise for their work and mobile numbers as I would need to direct the emergency services and the various neighbours to them at varying times - day and night - as they would be needing to come to the rescue of my poor mother who in their professional opinion was fine to be left.
I informed them I would be writing to the PCT and the police to confirm my concerns and that although vulnerable reports from the police and ambulance services had been raised and passed to social services the decision to leave my mother in her home was theirs and now their responsibility not mine.
It may sound harsh but you reach a point were you must demand they take responsibility for their decisions. Its is too easy for them to push the problems back on to worn out and worn down relatives.
Good luck with your meeting it is hard but you must demand they take responsibility for your mother, all you want is peace of mind, please take care you are so vulnerable.
My mother ended up being put into emergency respite by the avoidance to hospital re-admission team, this was organised by the GP, who was called out three times in the first 24 hours after leaving hospital to go home on their recommendation.

Take care

Jenni




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[Jenni1970]

Hi Sue,

Been reading all your previous posts, you are going through a dreadful time my heart goes out to you it is truly awful. I hope my previous post doesn't seem feeble it's only my take on things, unfortunately my mother was so plausible at times I felt 'the professionals' didn't believe how truly awful things had become. I felt our nightmare would never end, my health was so badly affected, hoping your ok.

Please take care

Jenni


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[Onlyme]

I would also ask the Dr to check just where your mother thnks she lives when she says she wants to go home, who will be there. This question is very telling as it can result in an 80 year old saying they live with Mum and Dad in a house from 70 years ago!

 

[Spiro]

The Christmas holidays are one of the worst times to be an inpatient in any hospital.

Patients can often be treated by locum staff, who may not be that experienced. Add dementia into the mix and I think you can guess the potential result.

If I were in your position, I would not agree to any meetings until after 5 January, 2015. In the interim I would try to find out when the consultant in charge of your Mum's care is due back after the holidays. Personally, I would want to know how senior the staff member is who conducted the memory test and whether they are on the hospital payroll, or a locum doing holiday cover. Then I would enquire, as nicely as possible, how much dementia training they had had.

Thinking of you.