A Welcome Care Pack for New Members

Grannie G

Volunteer Moderator
Apr 3, 2006
71,782
Kent
Hi Clarabella,
Welcome to TP.
I`m really sorry about your mother. Some of her confusion could be from being ill and in hospital but the reason for her being admitted in the first place is concerning. She was admitted because she became ill because she was unable to care for herself properly.
My neighbour couldn`t care for himself properly either, but I was on hand to help. This delayed his being admitted to a NH for a while, but it was inevitable, eventually.
The only person I know who employed someone in the home was a friend who`d suffered a stroke. He had three, eight hour shifts of nursing care and obviously it cost the earth.
I can understand your mother`s fear. It`s everyone`s worst nightmare. But all I can say is I`m absolutely sure she wouldn`t be confined to one room for the rest of her life. There are sitting rooms, lounges and quiet rest rooms in most good nursing homes. Would you be able to do a little research to see what`s on offer.
It`s a heartbreaking task, but for your mother`s health and safety, it seems you have no option unless she is able to afford the private care at home.
I`m sorry I can`t offer anything better. Someone else on TP might have some more constructive suggestions. I remember when I was looking at homes for my mother, it brings it all back. It`s so upsetting. All the best. Love, Sylvia x
 

Brucie

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

I agree with Sylvia - the homes do not restrict their residents to their rooms.

At my wife's care home, residents can walk anywhere - except out of the front door. There are lounges, secure gardens, a large conservatory area, dining areas.

At different stages of their dementia different people need different things. Exercise and diversion are necessary and care homes provide that.
 

Pol

Registered User
Feb 1, 2007
2
Manchester
Help (pol)

I'm not sure how to post replies or how to use this site.
My partner has been diagnosed with Korsakoff syndrome and I'm not sure how to cope. Can any of these leaflets help me.
Don't know who to turn to for advice can anyone point me in the right direction.
Thank you pol
 

AJP

Registered User
Feb 9, 2007
1
WORCESTER
Dear Clarabella
I like you am a new comer today,the support on this site is quite overwhelming just knowing you are all there with your own experiences.

My father was diganose with Alzheimer's in 2002 and was put on to medication, with this he seemed to have settled living at home with my mum and my brother,forgetful but happy.
Visiting 2 day centres a week gave mum a bit of free time. But this last 2 weeks has again seen a turn for the worst.In Nov last year the Consultant stopped 1 of his tablets and within days I saw a change in him. So here we are in hospital again.The guilt that comes with it is so hard to deal with, having your own father put into hospital, a man you put on a pedalstool all your life.I know deep down its for the best.
Anyway all we can hope is that he is soon back on an even keel and back at home. One good thing is that he has his health.

So Clarabella my thoughts are with you and I hope things work out for you in the end .Take care of yourself too.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
seen a turn for the worst
Hi AJP

If you pop in again in hear I was wondering if you could tell me please , in what way did your father take a turn for the worse? as I always wonder in the back of my mind In what circumstances they would consider takeing my mother medication away .

As my mother was diagnosed in O2 and put on medication, but is not under a consultant with her medication just our doctor, you can answer me in PM if you like or in hear and if you don't want to share I undertand
 

Clarabella

Registered User
Jan 24, 2007
6
East Sussex
Denial!

Hi everyone

Thank you for your replies guys and apologies for the delay in getting back to you.

My mum is now in a residential care home (with her little dog "who keeps her sane" (quote!) ) :confused: However, she is, I think, playing a very brave game by continually talking about "this is great until "I get better" and can go home". When she says it, it is almost like she is challenging me to say something. I am hoping that she will go the same way as when she was in hospital in that for the first few weeks of the 12 she was in there she hated it and got aggressive verbally more than one until the last couple of weeks when she said she liked it there and "felt safe". The aggressive times I am having with her now are sooooo similar so I am hoping that after a few weeks she will start to like it and not want to go anywhere "cos she feels safe"!

I do keep telling her that she can "come and go as she likes". We were even fortunate enough to find somewhere where she could have her beloved dog - "Angus". She has her room on the ground floor with a patio door so that she can let Angus out etc. She is just pushing and pushing and pushing about going home. I am sure it is all to do with not losing her independence which I totally understand obviously. I'd hate it completely!

Any experience from you guys about loved ones "in denial" who are in residential care homes which need paying for but they are in denial about why they are ther i.e. I am there until I am better! Even though I tell her her memory will not "get better" (gently of course) you feel you cannot put your Mums home up for sale until they have "accepted" that they cannot live there? How can I persuade her that this has to happen? I found that really difficult to type cos I don't want to take her independence away from her but I have to deal with reality as well - for her!:confused:

Thank you guys and so sorry for not logging on more frequently. Difficult cos - well for lots of reasons.

Take great care ev eryone and totally recognise and it does help knowing you are not alone. Hence how important this site is.

Take great care all

Clare:)
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
i'm forgetful

:) seeing your comment Clare that your mum's dog keeps her sane, reminded me of the other evening when my wife was trying to remember something, i was trying to help "throwing" suggestions in, she got angry at me and told me I needed help and should see someone. I had to leave the room and have a smile.
cris
 

x-lauren-x

Registered User
Mar 6, 2007
125
thanks

Im also delighted ive found the site- we are still waiting for our friend to have results of a brain scan but the poems, jokes, comments and advice have made this so much easier! I'm stilla t school at the moment so i don't see my frined as much but it is sad when he has to ask my name several times or why i am there and why he can't manage alone- reading some of the poems has made things much clearer and it is so nice to see other people feel the same. I'm a new member but hopefully ill get to understand this soon! Good wishes to all the carers and people using this site, and thank you for making this site so friendly and welcoming- i know its definatly helped me :) lauren
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,782
Kent
Hi Lauren,
I don`t think you`ll ever get to really understand Alzheimers because everyone`s so different. As soon as I think I`m beginning to get to grips with it, something unexpected happens to prove me wrong.
Never mind, we can only do our best.
What I can be sure of is a fantastic support group here on TP. There is always someone here who understands.
I`m glad you found TP too. Your friend is lucky to have you.
 

Clarabella

Registered User
Jan 24, 2007
6
East Sussex
Hi everyone

Hiya

It really does help reading all your/our posts. It removes the feeling of isolation and "is it only me who feels so lost"!

No news really from here. My mum is still settling in but getting in to the routine which I think she actually finds comforting.

All your advice guys is most welcome and good to read. I am sure that every person affected by this illness is different and in many way you have to take one day at a time. But it is good to know you have people who understand what you are going through cos they have been or are in your boots!

What a great site this is :D and thank you all.

Clare
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Clarabella, did not see this post , don't know how I miss it .


I am there until I am better! Even though I tell her her memory will not "get better"
How I feel about it. I don’t think that they are in denial. Sadly they have lost that logic and reasoning in they mind and no matter how many time you tell her, she is not going to believe it , to her in her world her reality in her own mind she going to get better if that give her comfort just go alone with it .

All I can do is put myself in your shoes if my mother was in a home and one day soon she will be , knowing what I have learn about AZ liveing with my mother and on TP , lots of people want to go home.

Logically you know she can’t , but bless your mother can’t and its going to make you feel guilty , but if you understand where your mother coming from with dementia /AZ it may help you more forward let go of the guilt and sell your mother home . easy for me to give advice , as I am not living in your shoes , but I hope it help a littlie .

Its ok where you want to post your post , but you may get more response if you started your own thread in the main room as more people pop in there and can see it .xx
 
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onlyone

Registered User
Mar 12, 2007
1
scotland
to clarabella

Hi About two years ago I had to encourage my father to move into a care home[he has vascular dementia] . The staff have been fantastic and have coped very well with my fathers changing needs and moods. I however find it very sressfull to deal with his constant phonecalls, but I am reluctant to have his phone removed as he feels it his last vestigate of independance. At least I am not the only one now who knows how demanding he can be!!! I still love my father but am worried about the future as I do not keep the best of health myself, and have found the medical proffesion less than helpful. What to do for the best? who knows I suspect we must all muddle along as best we can:confused: have tried home care----unless you have all the time in the world and no life of your own dont go there
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,782
Kent
Welcome MikeB

Hi Mike, welcome to TP.

Please feel free to post at any time. There is always someone here to offer friendship and support.

I hope we will be able to get to know you in the coming months.

Take care
 

x-lauren-x

Registered User
Mar 6, 2007
125
results

Hiya,
Thank you for being so welcoming, me and my family are currently waiting for our friends brain scan results. We are expecting it to come back with some sort of dementia but i'm sure, i think it will still be a shock if our expectations are proved to be true because at the moment we are all waiting , im not sure if we are hoping for dementia to be diagnosed so we can get the required treatment and help for our freind or wheter we hope for nothing to be diagnosed but then continue the struggle we are having at the moment. I would love to think somethign simple was diagnosed, that could go away with treatment but i think we are past this stage now. I think the worst thing is, feeling annoyed that my friend doesnt understand or remember me but then feeling terribly guilty for getting so fustrated when i know it isnt his fault. I am so glad that this website is here and some people have similar views. i know that if my friends diagnosed with dementia it will be very sad but then at least we can get him some proper help that might make him feel confident again, but then, having to tell him he is suffering from it would be terrible- he loves to be independant. We have struggled so much to gain some help from social services but my friend doenst want this and the day care he recieved has now been withdrawn.
Next thursday we get the results , perhaps then , we can begin getting the help my friend needs and hopefully making him feel more confident and happy again.

lauren :D
 

miniwing

Registered User
Mar 27, 2007
1
Luton, Bedfordshire
Why does it have to be this way?

Hello to you all. I'm new to the TP and still trying to find my way around the forum.

My Mum is just 55 and was diagnosed with Alzheimers in Sept 05. Until recently my parents were living up north some 250 miles away from their home town. It's been tough for both of them and they finally came home to be nearer the family for more support.

I struggle to remember my Mum pre alzheimer's, it feels like such a long time ago now and being in my early 20's and having the first grandchild in the family this is when I've needed her most. The feeling of frustration, anger and heartache this has happened to the once strong, no nonsense women I know and love is sometimes too overwhelming to deal with....but this isn't about me....

Until recently Mum has been on abixa, however we were asked to trial her coming off the medication as the 'trust' can't fund it due to what appears to be the usual postcode lottery. Within 2 weeks she left the house whilst my Dad nodded off on the sofa and went missing for over two and half hours when she was finally found over 3 miles away in a near by village by the police. She didn't recognise herself in the mirror the other day and simply said 'she's a lovely girl and she's just out in the hall - shall I go and get her.....and look she's wearing the same thing as me'. She's also been more aggitated, fiddling with her jewellery and being quite verbal towards my Dad, the TV or passers by.

So it is now down to my Mum's GP who is the only one who can say whether they will fund abixa for her. We'll never know whether the medication and sudden acceleration in symptoms are connected but I guess when your in this situation you just look for some form of remedy.....

Miniwing
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,782
Kent
Hello miniwing and welcome to Talking Point.

Your mother is so young, it must be heartbreaking for you.

There is a section in the Forum for younger people with dementia, and this is for their carers and family and friends too. Unfortunately, you will find a lot of posts there, from really distressed children, siblings and partners, and I`m sure you will find support there. We are hearing of more and more people suffering Alzheimers/Dementia at very young ages, which makes it all the more tragic, to me.
Of course all the other sections are well worth visiting too. Just browse around, hopefully, you will learn a lot and get to know many people in the same or similar situations to you.

As for the medication, it is successful for some, but unsuccessful for others. The main point is everyone should have access to it, to try it, and this `postcode lottery` is an insult and something we must all fight against.

Please keep posting and let us know if you have any success with your GP.

Take care
 

Per

Registered User
Apr 16, 2006
16
St Helens, Merseyside
We both got problems

You may remember from my previous message that Julia has AD but I did not mention that I have manic depression, controlled up to a point by lithium and anti-depressant sertraline. I am not in perfect shape but good enough to look after us both. I am rubbish at shopping and sometimes do not like to cook. When I am well I make good meals. We sometimes get by on bacon sarnies. Now and again we go out or have f and c. We are happy and joke a lot as we always have. My younger daughter has gone to Oz for three weeks where she is a bridesmaid and I am worried that J may not recognize her when she gets back. I am going away for four days respite at my friends' house in the Lakes. We should do plenty of walking My other daughter and our seven year old grandson will stay with J. I also forgot to mention that J is hard of hearing and cannot walk due to arthritic hip which cannot be operated upon because of AD. Each day I wonder what us going to happen next. Please remember me at Easter.
Best Wishes
Per