All at Sea

duke

Registered User
Jul 25, 2011
7
0
Co Armagh Northern Ireland
I have been for the last five years caring for my wife Jennifer who has Semantic Dementia with the help of my son Steven who is a god send Jennifer for the past two years has not uttered one word and what she understands no one knows her abblity to express pain is limited which means a trip to the doctors when we suspect a problem even they find it difficult to handle has anyone else been down this road i would love to talk to someone who has
 

Carabosse

Registered User
Jan 10, 2013
1,699
0
My mum can still speak but she can't describe pain, i have gotten to know the signs when she is in pain, you know the hand on the chest the rubbing of the arm or the knee. If i ask her if she is in pain she normally says no or i don't know, but if i ask if her arm is sore its no,but and then she tells me.
I know it might not be much help but the respite place where she is just now use some sort of board so the residents can point to the type of pain they are in or where they are sore, i haven't actually seen this but it might be of some help in your everyday life and when going to the Dr's.
 

Uratopper

Registered User
Sep 17, 2012
48
0
Fife, Scotland
Hello, Duke.
I was introduced to the Abbey Pain Scale by a member of staff from the CH where my father goes for respite.
Here's a link:

http://prc.coh.org/PainNOA/Abbey_Tool.pdf

This is the form used to record observations and, presumably, build up a picture of behaviours which may suggest pain. If you google Abbey Pain Scale there are a lot of sites available.
In my father's case, while he can still verbalise, I'm never to sure if what he feels is pain or whether he attributes other sensations such as numbness or pins and needles to pain. With our GP's backing I keep Dad on a low maintenance dose of Paracetamol which can be increased, if necessary, if I feel his pain is more severe
Hope this info might be of help to you.
All the best to you all
 

duke

Registered User
Jul 25, 2011
7
0
Co Armagh Northern Ireland
My mum can still speak but she can't describe pain, i have gotten to know the signs when she is in pain, you know the hand on the chest the rubbing of the arm or the knee. If i ask her if she is in pain she normally says no or i don't know, but if i ask if her arm is sore its no,but and then she tells me.
I know it might not be much help but the respite place where she is just now use some sort of board so the residents can point to the type of pain they are in or where they are sore, i haven't actually seen this but it might be of some help in your everyday life and when going to the Dr's.
How old is your mum my wife is only 58and the whole situtation has been life changing since she was diagnosed 5 years ago
 

Carabosse

Registered User
Jan 10, 2013
1,699
0
Mum will be 83 years old next month, but she doesn't look it and she sure as hell doesn't act it.
 

sistermillicent

Registered User
Jan 30, 2009
2,949
0
What a useful document, Uratopper, I will bear that in mind for my mum who can't tell us when she is in pain any more.
Duke, my mum doesn't have semantic dementia but her ability to put a sentence together is gone pretty much and pain is something she doesn't seem to understand but definitely feels.

I really hope you get someone who shares your experience here.

Love x
 

duke

Registered User
Jul 25, 2011
7
0
Co Armagh Northern Ireland
What a useful document, Uratopper, I will bear that in mind for my mum who can't tell us when she is in pain any more.
Duke, my mum doesn't have semantic dementia but her ability to put a sentence together is gone pretty much and pain is something she doesn't seem to understand but definitely feels.

I really hope you get someone who shares your experience here.

Love x
I hope so to semantic dementia is not that common it appears and because Jennifer is young at 58 we do not get much help because all help for dementia care kicks in st 65 i would love to talk to someone who is careing for a loved one with semantic dementia take care x
 

tre

Registered User
Sep 23, 2008
1,353
0
Herts
Hello Duke,

Welcome to TP. I do not know if you are aware of it but the Fronto Temporal Disease Support Group may help . The link is http://www.ftdsg.org

The Frontotemporal Disease Support Group incorporates:

Behavioral Variant Frontotemporal Dementia [including Pick's Disease]

Primary Progressive Aphasia , which includes: Progressisve Non-Fluent Aphasia, Semantic Dementia and Logopenic Aphasia

Alcohol related dementia

They have a list of regional contacts which does include someone in Northern Ireland.

with all good wishes,
Tre







The FTDSG is under the umbrella of The National Brain Appeal [formerly the National Hospital for Neurology and Neorosurgery Development Foundation] Registered Charity Number 290173
 

aquilaboy

Registered User
May 8, 2012
15
0
Bexhill on Sea
Embarrassing times....

I hope so to semantic dementia is not that common it appears and because Jennifer is young at 58 we do not get much help because all help for dementia care kicks in st 65 i would love to talk to someone who is careing for a loved one with semantic dementia take care x

Hi duke

I'm in the same boat as you - and what a boat it is! My wife Ann, 64, was diagnosed 4 years ago with Semantic Dementia but probably had it for a couple of years before that. She speaks OK but doesn't understand much of what is said to her. She can't read any more. The really annoying thing is that she wont say that she doesn't understand what is said when asked. I've thought about this and realise, that of course, she doesn't understand the word 'understand' and doesn't know that she doesn't understand - does that make sense? So although I try to explain things to her she acknowledges what I say but doesn't really understand.:confused:She is paranoic about the sun/wind/neighbours and sticks strictly to a daily routine. She will also discuss our very personal details with other family members and act and talk to complete strangers in a totally inappropriate way.It's getting to be a way of life now and I can't imagine a 'normal' existance. Her memory is fine (better than mine!) and after 6 years doesn't seem to be deteriating - maybe she reached a plateau? She sees a specialist every six months; we have a chat and that's it!

bill
 

duke

Registered User
Jul 25, 2011
7
0
Co Armagh Northern Ireland
Hi Bill
Thanks for your comments we are in the same boat my wife cannot speak and is totally mute and would appear to have little in the way of understanding she is also incontant and cannot express pain. Her consultant no longer reveiws her case but i can contact him if i have any concerns she is in a bad way but as Steven my son says mum is still with us. This is a very cruel disorder and to be struck down so young i have attended carers meetings orginised by the society and Jennifer my wife would appear to be the youngest person being cared for most if not all are well over 65. Semantic Dementia seems quite uncommon i think only a handfull of cases have been identified in Northern Ireland. Well bill i hope this reaches you keep in touch

Norman( Duke)
 

rjm

Registered User
Jun 19, 2012
742
0
Ontario, Canada
I have been for the last five years caring for my wife Jennifer who has Semantic Dementia with the help of my son Steven who is a god send Jennifer for the past two years has not uttered one word and what she understands no one knows her abblity to express pain is limited which means a trip to the doctors when we suspect a problem even they find it difficult to handle has anyone else been down this road i would love to talk to someone who has

Hi Duke,

My wife, Sharon, is 57 and in 2004 was diagnosed with atypical Alzhiemer's and/or atypical FrontoTemporal Lobe Dementia with a strong semantic component (she never did like being easily defined:D). She is still quite verbal but has had no meaningful language ability for awhile. I tend to go by body movements to determine if she is in pain or uncomfortable. It is very difficult as her tolerance for pain seems to have increased very much.

I don't really know if her tolerance has increased or if it is that she doesn't know any longer what pain is and so doesn't react. Last summer we were having a walk around our place and when we came back and I took her shoe off there was a large (3/4" diam) piece of sharp gravel in it. It must have been in there for 1/2 hour or so as she was playing with the stones on our drive when we first went out but then we had been walking around the gardens and field for a long time after that. It would have pained me considerably but she had no reaction.

Just want to let you know you're not alone.
 

duke

Registered User
Jul 25, 2011
7
0
Co Armagh Northern Ireland
Hi Richard
Thanks for getting touch it can be a loanley journey we are on Jennifer my wife was diganosed four years ago i found it hard to take in that there was no treament at all for this type of condition and that young onset dementia was not common Jennifer has the same as your wife but her condition would be slightly more advanced she also has a very high pain tolerance i think she thinks pain is normal now so we have to be extra carefull and keep a close eye on her. Jennifer was a very inteligent woman who had a great command of language a great cook wife mother and business woman but i fear that has all gone she does not even know the time of day or what day of the week it is she has been reduced to a living body who has to be attended 24/7.I know people who are much older with denentia and can speak and understand and have a much better life it seem so unfair.
Duke
 

greatmeadow

Registered User
Aug 22, 2013
9
0
Worcester
Hi Duke
You and I also going down the same path, as my wife was diagnosed nearly a year ago at the age of 56, so quite similar to Jennifer. I fear my wife is declining steadily, and it is now very difficult to understand much of what she says, although the intelligence behind the condition (she has a law degree) is largely unaffected.

Our speech/language therapist is at the moment investigating something called a Lightwriter, and we are optimistic of borrowing one to see how she gets on as they are expensive. We are investigating grant aid.

As you know only too well, it is damn hard, tiring and hugely frustrating for her, and trying to change the way she speaks or asking her myriad questions to find out what she is saying tends only to intensify the frustration and inability to elucidate.

Happy to keep in touch and exchange ideas/thoughts etc if that helps.

best wishes
David
 

Mamsgirl

Registered User
Jun 2, 2013
635
0
Melbourne, Australia
Hi Norman,

Welcome to TP, and so sorry to hear what you are going through. You and Steven must be finding it so difficult with Jennifer being unable to verbalise pain and discomfort, it sounds an exhausting proposition long term.

Good to see David's been along to lend some insider perspective and support. I'm wondering how common it is in dementia generally to be unable to recognise and describe pain.

I just had a look at Uratopper's link because recently we were sure my stepfather was in great pain but when asked he would appear to gather his thoughts and reply quite clearly "no". On the Abbey Tool his score was at least 14, so in the severe range. It was only when the nursing home GP increased pain relief on a "just to be sure" trial basis, that SF began eating and drinking again.

All the very best to the three of you,
Toni