My mum

suzw82

Registered User
Jul 29, 2009
10
0
Hi this is the 1st time I have been on this sight. I took my mum out of a care home in November to live with me. She is 85 and now has very severe dementia, dr thinks it Lewy bodies which is horrible as she has horrific hallucinations. My biggest problem is she lies all day with her mouth wide open and makes this horrible noise like a wounded animal. She makes this noise all day and all night if her mouth is wide open but if her mouth is closed and her face soft she sleeps well and makes no noise. Her CPN says she has never seen behaviour like it before and I wondered if anyone else has. Her mouth is rigid when open and her face goes completely contorted. We are finding it so hard to deal with as it is very loud all night.
 

Winnie Kjaer

Account Closed
Aug 14, 2009
2,011
0
Devon
Hello Suz
I am afraid I have no advise on this subject at all, but I wanted to welcome you to TP and hope you will benefit from the support available here as well as all the knowledge and info available. I know I have. I am sure other people will come along shortly who have experienced similar things. Take care
 

suzw82

Registered User
Jul 29, 2009
10
0
Thank you

Thank you for replying at least I know my message has been read as this is the first time I've been on. Do you know what people mean when they say stage 6 or 5 of vascular dementai? X
 

suzw82

Registered User
Jul 29, 2009
10
0
Thank you sandy. I have just read the link and my mum is at stage seven and I'm at the end of my rope as to what happens after this. Everyone says it'll get much worse when she deteriorates but how could it get worse? She has no ability to do anything and apart from eat and drink with a lot of coaxing and a lot of choking there is nothing else in her life. She cries horribly and loudly most of the day and all of the night. She is on quitiapine but only for the last two weeks. They have tried lots of different meds but nothing seems to help
 

Winnie Kjaer

Account Closed
Aug 14, 2009
2,011
0
Devon
Hello again Sue
You poor girl it is awful to watch you own mother deteriorate like this. You will find so much support on here so please keep posting. Please try to take a day at the time, have you any professional support. Have your mum had an assessment to establish what support is available for her and you too could have a carers assessment to enable you to get the right support to see you through this. Do you go to a support group of any kind. The Alz. society have got groups almost everywhere, they usually meet once a months but may vary with other things going on. They really are so good and informative. The more support you have the easier it is to learn to take one day at the time and not to worry too much about the future, but naturally you need to plan for support and other things as they become necessary. I do wish you all the very best.
 

PollyP.

Registered User
Oct 8, 2009
327
0
Herefordshire UK
Hello Sue

Welcome to TP, although I am so sorry that you are having to go through all of this. You obviously love your Mum lots (taking her out of a care home to look after her yourself) It must be very hard on you and all of the family. Is there any medication that your Mum can have or perhaps she is already receiving it now. I don't know anything about having to deal with the noises and the open mouth, but I'm sure some-one will come along to help.

Try to get as much help from the Services available.

Love
Pauline
 

Soup Runner

Registered User
Oct 3, 2008
75
0
Hertfordshire
Hello Sue,

My Mum is nearly 81 and has Lewy Body Dementia and like you I find the hallucinations very hard to deal with.
I have never been very close to Mum and so having her live with me and my husband was never an option. She is in a nursing home and again like your mum can do hardly anything for herself.
As I don't spend nights with her I can't offer any advise about the noises you mention but if nobody comes forward on TP I will ask the matron at Mums home if this is a common problem.

Nina
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Just to say I can't advise at all, my mum fortunately didn't get to that stage. I can only say hang on in there. Talk to family and friends when you can.

Useless advice but just my best.

Love

Margaret
 

suzw82

Registered User
Jul 29, 2009
10
0
Thanks

Thanks all of you. Although so far no one can help I feel better already. My mum only went into hospital with a sore back on Xmas Eve 2008 and never got home.(It turned out to be constipation but ended up with dementia) The hospital insisted she needed 24/7 care and thats why she ended up in the care home but it was awful and I spent all my days down there and we were spending her savings at the rate of £2000 per month and she got very little care for that. I did all her caring and that was why I decided to take her home. Also we were told she only had months to live and thats now 14 months ago. She is a very poor old lady with no quality of life and although my heart breaks looking after her I get angry when she makes the horrific noise I was talking about. Mu husband never wanted me to bring her here as we had no room but I rented my son a wee flat to make room and he resents this very much and when my mum cries he gets angry with me.
 

suzw82

Registered User
Jul 29, 2009
10
0
Lewy body dementia

My mum has this type of dementia the Dr thinks and they have struggled to find medication to help her with hallucinations but to make her sleep peacefully at night but not to be too sedated during the day. Does anyone have any ideas?
 

MJW

Registered User
Sep 24, 2009
154
0
East Sussex
Distress?

This is a completely off-the-wall idea, but you say that your mother is having hallucinations and so I wonder if her facial contortion etc is a sign of fear at the hallucinations? Might it help if you were to play some soothing classical music to her via headphones? It might bring some nicer images into her mind.
 

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
That's 1 of the things I was thinking of mjw. Also could it b pain. my mum has mixed dementia and when she is ill or in pain often makes noise . going 2 pm u as have an idea
 

suzw82

Registered User
Jul 29, 2009
10
0
This is a completely off-the-wall idea, but you say that your mother is having hallucinations and so I wonder if her facial contortion etc is a sign of fear at the hallucinations? Might it help if you were to play some soothing classical music to her via headphones? It might bring some nicer images into her mind.
We have tried playing lovely cd's during the night but she still cries and shouts help constantly. Will try and get a head set and do it closer. She sleeps with her mouth jarred wide open for 14 hours at a time. Does not close it to swallow even once during the night and it is bone dry all the time. Her meds just sit on her tongue and I have to spray her mouth every hour during night to give her saliva and give her meds in with yogurt.
 

suzw82

Registered User
Jul 29, 2009
10
0
That's 1 of the things I was thinking of mjw. Also could it b pain. my mum has mixed dementia and when she is ill or in pain often makes noise . going 2 pm u as have an idea
Thanks I am open to any and every idea as we have tried everything we can think of and nothing seems to help. She is waiting on carers coming in this morning and is screeching 'help' evry few minutes.
 

Starshine

Registered User
May 19, 2009
247
0
Seaside
Hi
Oh you poor thing, I do feel for you, my MIL had Lewy body dementia the hallucinations were quite scarey, while in the Nursing home she screamed and cried the whole of the time, we were able to calm her sometimes, imagine how scared they must feel, not understanding whats going on, and probably in pain as well MIL had severe arthritis too. Sit and talk quietely with her, stroke her legs her arms etc let her know you are there with her. This illness is so all consuming and scarey to both sufferers and their loved ones - why oh why do we not receive more help, advice, caring etc.
Good luck, I can only say I lost MIL a year ago, still miss her every single day, and with all the unhappiness and helplessness I would still want her here with me today.
Starshine x
 

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Hope u got my pm.

maybe a soft toy will help give some comfort,my mum has a teddy which she clutches when in distress and cuddles,strokes at other times and when we make ted dance,jump and speak it often brings at least a smile. Do try and arrange some time off just 4 yourself. their are some organisations about that will come and sit with mum for a few hours a week. I have a lady from Crossroads care which u might want 2 look into don't know if they in your area tho.
 

pinkann

Registered User
Nov 26, 2009
84
0
lancashire
pinkann

Hi Everyone. It's a beautiful day here in Lancashire, but Will is fast asleep on the settee. Our daughter, husband and three children came up from Worcester for Father's Day, Will seemed to enjoy sseing them enormously, but seems very tired, now they've gone home.
I wonder what fellow mwmbers think about Dementia suffers having surgery? Wilf lost most of the sight in his right eye about 10 years ago.' A Central Retinal Occlusion' Now our optician wants him to have a eye-lid lift, as his lids are way down our his eyes and apparently this op would help his sight. But, I know Will is going to get terrible upset about it all and I wondered what anyone else thought. It would only be a local anaesthetic and maybe some sedation etc.Is it worth the risk though? It's not vital to his health, it's just to help his vision. I know he'd be a lot better if I was in theatre with him, as I used to be a nurse, but of course I don't think this would be allowed.
Also reading through all the threads, what do people mean when they say their loved one's are at stage 2 or stage 7 etc. No=one has ever told me what stage Will is at.We've seen the consultant at the hospital once, that is when Will got his diagnosis ,we 've never seen a Dr. since, only our own G.P. when we ourselves have a woory and make an appt. to se him. Not on a regular basis. No nurses come to the house as I've read in the letters.No C.P.N.'s or anyone. Hope you can help me. Love Ann.
 

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