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Permalink Reply by Jill Sullivan on February 18, 2012 at 17:56

Hi how can I get my 90 year old mother who has dementia to drink I have a terrible time getting fluid in her she is prone to urine infections as well at the moment she is on a drip with dehydration iv tried everything I can think of its like she is giving up

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Permalink Reply by Ruth Smith on February 18, 2012 at 23:04

How can I get my 87 year old grandad to accept my 84 year old grandmother's dementia? He gets so frustrated with her repeating things and doing odd things that he shouts which gets her more flustered. I can understand how he feels but it would help him if he could realise that it is the dementia that makes her behave like this and she's not doing it to wind him up.

 

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Permalink Reply by AUDREY SPEARING on February 19, 2012 at 12:59

Hello Jill

dementia is a slow shutdown of the memory cells, your grandmother has most likely forgotten how to swallow fluid can br given via Ice cream, trifles, ice lollies, cucumber tomatoes Tea or drinks with a straw its all a matter of trial and error

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Permalink Reply by Jill Sullivan on February 19, 2012 at 13:20

She is refusing almost all but a few teaspoons iv tried ice cream jelly even just teaspoon of water it's like she has given up I'm so worried about her poor pop is recovering from a stroke and it's not helping him seeing her refuse all foods and liquids iv even tried spooning liquids in all day every 5-10 min and even this gets spat out at times we've been told she won't come off drip till fluid intake increases what if it doesnt

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Permalink Reply by Jill Sullivan on February 19, 2012 at 13:22

We have had dietician in and is on soft puréed meals because of the swallow reflex iv even liqudised home made soup which she normally loves but no luck even watering it down slightly

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Permalink Reply by Dianne Craven on February 19, 2012 at 21:59

My Mum has recently been diagnosed with vascular dementia.  Thankfully, she only gets confused when she is tired or upset.  However, I too have had problems with fluid.  At present I can manage by making it fun - using children's drinking straws, fruit pieces and flavoured ice cubes.  Any further suggestions would help.  

I would like to ask about pain management.  I know she is in pain but am at a loss has to how to treat.

Do people with dementia have higher temperatures?  Mum always sees to be either very hot or very cold.

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Permalink Reply by Sam Cowley on February 20, 2012 at 15:23

Hi Dianne, Jill, Audrey and Ruth.

Thanks for your questions, I will pass them on to Graham who will be on the forum this Friday to provide you with some advice.

If anyone else has any questions about dementia care, please post them below and I will pass them on.

Many thanks,

Sam 

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Permalink Reply by Jill D on February 22, 2012 at 0:35

Mum has had vascular dementia for a few years, we keep her at home which we feel is best for her welfare, she is 95.  She has spinal problems so excercise has to be minimal.  She is very strong willed.

 

Sundowning is a nightmare - literally.  Mum starts to get erratic in the evenings, she can shout most of the night, some of it is a less than ideal childhood re-emerging other things just don't make sense.  It all started in a bad way when mum went into hospital last year, some pretty awful things happened there mostly during the night, instead of the hospital dealing with their problems (mysterious serious injuries to mum) they just drugged mum with halloperidol.  She is off the drugs now but it has left her as a different person.  Is there any way we can deal with this?  At the moment we are not getting much sleep at night, we are sleeping late into the mornings, we are keeping her time not ours, will this stage of dementia last or is it a passing phase?

 

Also after the spell in hospital she is making noises, moaning and groaning mostly, hour after hour, it becomes mind numbing to hear.  The pitch alters as to what she is doing, she eats and moans, if she enjoys the food the pitch raises, unhappy and the pitch lowers.  Again the question is about whether this is a phase, is it a precursor to something worse? Can she be re-educated?

 

The lack of information and techniques to deal with different phases of dementia is worrying, when mum was diagnosed the sole amount of information we were given was "it will get worse", there seemed to be a presumption that we would just put her into a home and the 'experts' seem to regard us with mistrust for wanting to keep her as part of the family.  It seems that she is to be reviewed every 4 months and no-one is interested unless she gets violent.  Quite frankly this attitude disgusts me, is there anything which can be done to delay the progression of the illness.  She doesn't seem to want to go to day centres and seems to be increasingly unhappy when i go out,  dad is already a prisoner in out home looking after her, now I am to be a prisoner too as she seems to get extreme back pain if I am out more than an hour, the blood curdling screams last for hours even after pain medication should have kicked in.

I have very major concerns about the rewind aspects of dementia, we have constantly told anyone who will listen, and many of those who won't, that we are uncertain what mum is rewinding back to and have tried to find out if mum can have some sort of councelling to try to resolve what might have been, we have been told there is nothing, what can we do?  We are sometimes seeing signs of a brave but frightened child emerging.

 

Thank you for your help, I appreciate having your views, even if there isn't an answer to the problem it means a lot to me that someone is at least listening.  I feel that people with dementia are being badly betrayed by the system, as are their carers, I do feel very annoyed when i read that relatives, friends and neighbours should all be informed of the illness and they will all rally around to help, certainly in our case tunnel vision is the order of the day, we have become invisible to everyone, making a lot of noise to the authorities has left me not flavour of the month in many circles, I do believe this is a cause that must be fought for, if we don't fight now what will the world be like when we get a bit further forward in life's journey?  Thank you.

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Permalink Reply by Jill D on February 22, 2012 at 1:08

In addition to my above questions, mum sometimes starts to talk about herself in the 3rd person as though she exists as two people, at first i thought it was a hallucination about another person being present, it definately seems to be the 'normal' person is still there alongside the altering person.  is this the brain trying to find new pathways?  Something inside her head seems to be trying to hang on, the dementia person gets evicted and the old person re-emerges, she knows something is wrong.  As the illness progresses it is becoming more apparent that there are now two people inside her head, she desperately fights to re-assert herself, is there anything we can do to help her.  is there any kind of brain training?

 

She had another scan last year, we were told that the major vessels hadn't altered at all over the years since the last scan but it wasn't possible to tell what was happening in the minor vessels.

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Permalink Reply by AUDREY SPEARING on February 22, 2012 at 3:35

Dear Jill   my love and hugs go out to you i know exactly how you feel having nursed my husband for 8yrs its a no win situation,one can admire your mother as a fighter she is trying her best to overcome her illness. I suffered all those traumas,called out for help but  there is none except to put her in a care home which i could not do :Till death us do part " always loomed up in my head ,family came occasionally but he hated the fact that he could not join in the conversation and made it unpleasant for the vistors that they left early,  their visits got less and less, he never accepted they were his children and called them" your friends why do they keep coming in this house?"The final stages of Dementia for me were very tramatic .

Don became unable to do very much he had forgotten how to swallow how to eat or speak or walk yet the pain in his face told me he was saying   why me?  eventually i had no choice but to ask for him to be  transfered to a care home , he died with in 10days..

There is life after , i had adjusted to my freedom,  friends came back, family visited and invited me for tea and trips out , i volunteered at the care home to teach art.,  have whole days to my self can please myself what i do or eat, can soak in the bath without fear of leaving him alone, yes i miss him   shed tears on my pillow but theres no turning back .one must embrace the future . so Jill just run away to the PC when frustration cant be controlled and realise there are hundreds of us been throuigh or still going throuigh the same trauma as you are now.hold on . 
 

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Permalink Reply by Sylvie Nickels on February 22, 2012 at 9:37

My problems seem very minor compared with some of those I have read on this forum.  My husband, aged 90, has been diagnosed with mild dementia.  He has had a very active and quite adventurous life (sole survivor of air crash in WWI1, three years as p.o.w., sole survivor of an avalanche in the Himalayas, particpation in many climbing and surveying expeditions.and then, with me, long distance canoeing on some of the world's major rivers).  Some time ago he started writing his memoirs for the grandchidren and anyone else who might be interested.   For some weeks, perhaps months, he has felt so lethargic he can't get motivated to continue, yet I feel it would improve his quality of life if he could become absorbed in this once more. 

I don't know to what extent I should gently bully him into getting on with the memoirs or just leave him to go his own way, which seems to be making him depressed (and incidentally increase his wine intake).  I have recently bought a small recording machine in the hope that if we discuss the memoirs it may trigger a renewed interest.  Currently I am trying to learn how to use the darned thing (a bit slower to do when you are 81!)

Any advice appreciated.  And my good wishes and admiration to you all.

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Permalink Reply by Jill Sullivan on February 22, 2012 at 10:56

My poor mm who has had vascular dementia for 15 years now and was dehydrated and not eating is now in hos been in for 5 days was on a drip and perked up but as soon as the drip was taken out after 2days she's back to square one had the drip overnight perked up but sunk back again won't drink poor pop is so worried he had a stroke 6 months ago and is finding the stress to much he's struggling with macular degenaration on top of the extreme tiredness mum often goes into 3rd person and seems to have songs goin on in her head while sitting in a world of her own dementia is a cruel disease and everyone is different in how they react if you can get him nterested in his memoirs again it would be good for him perhaps if you start tonfinnish what you know he will take over good luck

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