• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Tears And Tissues

storm

Registered User
Aug 10, 2004
269
notts
Dear All, Just to fill you in on the visit from mental health lady who came out last week to do a assesment on mum we have been waiting since last july for one. She was very nice but there were endless forms and questions 2hrs in total.I could have cried a bucket of tears i think because i spend 24/7 with mum i had not registered how much her memory had deterated she hadnt really got a clue about anything past or present, she did the standard test on her and she was a lot worse than last time. I sat there and i just wanted to tell the woman to go,why did i put mum through this? i felt so cruel she was looking to me to help her answer how many children had she got she had no idea,yet sometimes i find it hard to believe theres anything wrong odd times she seems quite clear. Anyway the lady is coming back in 2 weeks i just wish at the moment i never started this and we would have managed on our own.I am so sad for her and yet she cant even remember her coming.STORM
 

Kriss

Registered User
May 20, 2004
513
Shropshire
Dear Storm

Hang on in there. As you say, Mum can't even remember it now. We spend a lot of time not wanting to admit to even ourselves how poorly they have become and when we have to fill in forms or answer questions it's all too easy to play things down as it's us doing the real hurting.

You've got this far so don't give up. You WILL need help sometimes and at least you will have set up the basis for getting some. It ain't easy but what is about this horrible disease.

Chin up
Kriss
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Storm
the feelings that you describe are not exclusive to you and are not unusual.
I remember well my Peg when asked questions that she did not have a clue to the answers,looking at me with desperation in her eyes.I could have wept and told the consultant to get lost and left there and then.
I felt just like you did,rotten swine,why did I start this,I can manage on my own,I don't need them.
Two things to give you comfort and which did for me.
Your mum won't remember the question sessions,soon forgotten,and you remember that you cannot cope alone for ever.
Many of us have been through these situations and believe me
(all together) day by day and I promise you it will get better although it is an up and down time.
thinking of you
Norman
 

Nutty Nan

Registered User
Nov 2, 2003
788
Buckinghamshire
You are in good company!

Same here, Storm:
Lady arrived at 4.30pm, "just a few questions" ...... two hours and 27 pages later, and with many notes written out in long hand, she said "right, that's done then. Now there's just another short one to complete". I was nearly bursting with unexpleted expletives, as I really could not see the point of it all: hubby is her client, as she put it, but he was only able to answer a very small percentage of her questions. I am amazed at how polite we both were, but hubby did point out after nearly two hours that he hadn't even had his dinner yet!
Well, she was doing her job and carrying out instructions, and I was banking on Tony not remembering too much about it once he was able to concentrate on his meal. But I had just very slightly underestimated him! When our daughter visited a little later, he told her about 'the lady', and said that she asked hundreds of useless questions, and that he had "actually felt like dropping his trousers for her, then she would have had all the answers she needed!"
I realised that this was not such a bizarre statement when I remembered her questions about him being able to dress by himself, visit the toilet, possibility of incontinence etc.
Trouble is: we are likely to need them more than they need us, so we stick to our good manners and go with the flow. All par for the course.
Good luck to all who are in the same boat!
Carmen
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Hi all, yes it does hurt, having to actually admit to others, outsiders, oficialdom if you like that things are deteriorating, but it is the only way they can get us the help we so badly need. As some of you have said, at least the sufferer does soon forget, or will do in a few days. Sadly, we do not and that old dragon guilt rears up and smites us down in tears. But when you look at it from the practical instead of the love angle, we do need some help, we do need to tell them what kind of help, we do need to tell them how often we need that help. If they don't ask, they can't help, so we have to say to the guilt beastie, be gone my fiery friend, you are not welcome here because I want the best I can get for my loved one and you ain't gonna stop me! Sorry, bit carried away there, just trying to make you smile as well as be practicle thinkers! lLotsaluv, She. XX
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Storm - so many of us on T.P. could say " been there, seen it, got the tee shirt". Nothing helps - today it is you.

Just hang on in there, loved ones do forget, if not today certainly tomorrow, and we all need help. The wheels of officidom grind exceedindly slowley, but you will be thankful in the end that you put the 'wheels' in motion.

Norman says it all, with his 'day by day', so hang on in there, love to you and yours, keep smiling, Connie.
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Storm,

Because we live with AD every day we don't see the gradual decline until it gets hammered home during official question times. It isn't our fault, but there always seems to be a sense that we aren't doing enough or doing the right things. Hence the pointless guilt that we suffer.

The sad fact is that AD is going to ultimately beat us all eventually, unless a miracle occurs.

We have to try to banish guilt as far as possible by knowing that we are doing our absolute best each and every day.

Jude
 

storm

Registered User
Aug 10, 2004
269
notts
dear all. thank you all so much for your repies,feeling a little better now . Ican live with the guilt and the pain if i knew there was goining to be something gained by it but i have the feeling that nothing really will be done just the same as when we had our assesments with s/s.I think mum is becoming less and less aware of whats going on around her and seems to be struggling more with finding the word she wants to use i know this is to be expected but it still hits you as it seems to be moving on faster now.My bigest fear is how bad is it going to get i can cope with the confusion and incontinance which is also getting worse but i am so afraid she will lose more mobility then what do i do. I know stormin norman DAY BY DAY but sometimes its a hard saying to follow. Did you all know this is supposed to be the most depressing day of the year? Well you do now. storm
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Dear Storm, thankyou for reminding us that today is "the most depressing day of the year"
Have just had an awful meeting with the OT, absolutely useless and made me feel so bad.
However, tomorrow will be better, so I will take time to calm down, and persue the matter further later in the week
Keep smiling - Connie.
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Storm, I don't know quite what you mean, will you want to keep your Mum at home if her mobility deteriorates? If you do, you can request a hoist etc. Mum had a bed/chair hoist, provided by SS. We also paid for a "mermaid" type bath hoist and a stair lift for her ourselves. But Storm, if it would be a nightmare for you, no-one would think any the less of you if you said that it was time to hand the job over and just have quality visits with her you know. Love She. XX
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Connie, share the awful time you had with the OT on here with us, don't bottle it up, lets all have a mutter together! Love She. XX
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hi, thanks for your messages.

OT was female, NHS. Nice lady, but clueless when it comes to dementia.

Dearest Lionel has very bad spacial and mobility problems. She was due to assess him for a toilet frame. Seemed to think his problem was just physical, so suggested a raised seat. Could not seem to grasp that he has a problem with chairs, hence trouble trying to sit on the loo.

She asked him where he sat in the lounge, and then commented that he was able to sit on the sofa quite easily, she thought I was mad when I said sometimes he sits on the floor if he misses the sofa.

We then spoke about his falling out of bed. Solution, put a cushion on the floor to 'cushion' his fall. When I said I had difficulity lifting him back up, (I have had 2 ops. on my own back) she asked him if he understood instructions, he said "yes of course" But he does not understand instructions, cannot tell right from left, and has lost a lot of mobility on his left side.

I could go on, but this after last weeks fiasco, when the consultant asked the G.P. to order a C.T. scan (All down to finance) and the G.P. did not think it was warranted.........UGH

All this at a time when in Lionels own words "today is as good as it is ever going to get", why can't some people just use their common sense. I am p....d off battling to give Lionel the attention and comfort he desearves.

Sorry to have gone on so long, and I know my troubles are small compared to most of you out there, but it makes me feel so inadequate. Must go and check on Lionel and make myself a quick cuppa - Cheers & thanks Connie
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Connie, oh dear, I can understand your frustration now. Is the fact Lional has dementia not on his notes? if it's not, it darn well should be! Regardless of whether it is or not,Perhaps you could write her a note? Along the lines of thanking her for her time in seeing you both and outlining the problems you have with the things she suggests and why. If you explain that you are unable to speak in front of Lionel because you don't want to hurt him, that he honestly does not realise he is unable to do the things he tells her he can etc, she may just start to understand and hopefully, the penny will drop about what she needs to do to help you both. Best wishes, love She. XX
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Perhaps the Alzheimer's Society would consider arranging dementia seminars for the health service, since so few members of the NHS - and government - appear to know what it is, and how it affects people?
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Nada

thanks for your clear description!

I understand that "However, the priorities for the Society have to remain offering support and information to people with dementia and their carers."

I simply reflect that the support could be better directed to those ends if the government/council/SS/NHS/tax-funded part of the scheme of things actually understood the condition better.

Seems to me that, so frequently, AS is helping dementia sufferers and carers to understand and overcome major hurdles of all sorts put in place by those who should be there to help them.

That's life, I guess....
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Bruce
what a good idea.
In my experience the only ones that knew anything about dementia in the NHS were the staff directly concerned with mental health.
Even then one of my concerns was the lack of activity programes,often just left sitting,sleeping without any sort of stimulation.
Short of staff would be the answer I guess.
all the best
Norman