General Chat

Hi there,

Just thought I would add my mother's experience as it gave me an insight into how the mind can work.

Several years ago my mother had a major 11 hour operation and afterwards she was simply not herself. She shouted and swore at the staff in the intensive care unit, said that they were trying to kill her, threw things, tried to get out of bed and phoned my dad and demanded that he come to take her home immediately.

She said that the doctors were carrying out black magic rituals and called the priest who came to visit his wife every day 'Father Bathbrick'.

This was not my mum who was very gentle, never swore and had no agression in her at all. After a few days of this the doctor diagnosed a urine infection and once this had been treated thank god I got my lovely mum back again.

She was absolutely mortified at what she had done (she remembered some of it) but she explained what she was thinking and feeling at the time. She said that part of her brain kept telling her not to be silly but there was a person behind her (she knew who it was as it was someone she had known as a child and didn't like) who was whispering in her ear and telling her that the staff were trying to kill her. She was frightened and the voice just would not go away although she told it to. The voice was louder than the part of her brain that told her it was all nonsense.

She also had hallucinations - she saw flowers with ugly faces and sharp teeth growing from the ward floor. She would shut her eyes and tell herself not to be so stupid, but when she opened them again, they would still be there. She saw the doctor's dancing in a row in front of her, dressed as witches.

She said that at the time it was all absolutely real to her - she actually heard the voice and saw the ugly flowers. This was a surprise to me as my mum was not in the slightest bit fanciful, she was a very down to earth person.

I have known people with Alzheimer's and dementia both before and since and although my mum's experience was different it helps me understand how awful it must be for them. I sympathise with everyone who is going through this experience with a relative.

I am so glad that idecided to click on chat for the fist time today,and have found this topic for discussion.My mum was taken into a care home in October as it was impossible for us to look after her anymore,all of the family were devestated when the decision had to be made as we all adore mum and the thought of her having to go broke our hearts.She will be 96 in Feb and we wanted her to live her days out with us.It has taken about three weeks for her to settle in and also for us to get used to the idea.She has no sight and very limited hearing as well as hardly any mobility and double incontinence.As she started to have signs of dementia we knew that a decision had to be made.She is being well looked after now but of course it will never be good enough for us.Great to know that there are others out there that know only too well how we feel,its been good for me to write it down and tell others who are in a similar situation.Best wishes to all.

Margaret,been there got the tee shirt and it is awful,but as long as your mum has got good loving care where she is that is good.We discussed having my Mum to live with us with Dementia and after a very long think and talk,we decided it would in the end be too much ,and we had to think of us as a family too.I think it could have been a disaster.I don't feel guilty,but just wish that she hadn't had dementia.It's an awful thing.I hope she has settled now My Mum never did settle.Always escaping to go home!!!
Helen xx

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Hi Margaret
I also got the T Shirt like Helen.
With me it is my brother. It breaks your heart seeing them in a home but as you already know it's hard to care for them yourself. They are in the best place even if sometimes you think it isn't good enough.

I also felt like you Margaret putting it down into words for other people with the same problems somehow helps me a little. Friends and family are great but sometimes they just don't understand what you are going through.

Take Care Margaret and hope all goes well for you

Went to see my brother yesterday and we spoke to the Doctor. He feels Steve may only last a little while longer now. 3 months at the most. He said it was hard to tell but it could happen at any time.
Would be a blessing to me as he has no quality of life and a peaceful passing would put him at rest.

Have a nice day everyone
Regards and hugs
Jackie

Hi Jackie,sorry to hear about your brother.Thanks for your kind words,perhaps this feeling of guilt that i carry will pass in time.I must look on the bright side and be thankfull that she still has her family to look out for her,a lot of those poor souls in the home never have a visitor.I take my little dog in to visit and their faces light up when we enter the room,just to touch and stroke her means so much to them.Hope you have a nice Christmas,best wishes Margaret

I still have guilt Margaret...............4 years on:(

But i know in my heart that Mum is in the best place, the staff love her and they have become a second family for her.

She hasn't known any family members for months now and has little speech or understanding of speech left.

The staff know her needs better than we do and she usually responds well to them.

I promised her she would always be safe and looked after really well and make sure those two promises are kept.

xx

Hi Margaret and Kitty
Yes I agree the guilt never goes away and everytime we go to see my brother we feel guilty leaving him. But like Kitty says they are in the best place and the staff do their utmost to keep them happy and comfortable and know what their needs are. All we can do is be there with our love even if they don't know who we are. We know in our hearts we were always there for them.
Have a lovely Christmas both of you and take care

Regards
Jackie

Hello everyone,

Thank you too for starting this thread, which I have been reading through. Some of the situations mentioned are just like the ones we have experienced with my eldest sister (87) She was diagnosed with altzheimers about ten years ago, but was fortunate enough to be put on the Aricept tablets which keeps the disease at bay for a while. But a couple of months ago she had a couple of infections and was taken into hospital for three weeks, then her son managed to get her into a home that takes dementia patients. I can only get to see her when I go up to the Midlands as I am in the South, but I can send her e.mails which the manager of the home will read out to her and then stick them on the wall in her room. I can phone her at any time, and if visitors go a lunch time, and they wish to have a meal with my sister, they can do.
When she was at home in her flat, she had carers' coming in four times a day to make sure that she washed and dressed etc. They got her meals ready and gave her her tablets. But her son decided that a care home was best for her as she was going out on to her balcony late at night in her nightie and with nothing on her feet, and it would take her neighbours ages to persuade her to go back indoors.
She had been found wearing three pairs of knickers (unfortunately, all soiled) or wearing two skirts, or putting a blouse on top of a cardigan, and then gradually being unable to do up zips or do buttons up, so I know she is better where she is in the care home where she is looked after 24 hours. She has got to the stage now where she will literally (spend a penny) anywhere. She has a toilet in her bedroom, but just doesn't recognise what it is. I hate to think what the next stage may be.
The most heartrending thing though is when her sons or my other sister visits, she begs them to take her home with them when they leave.
So sorry, can't write more now.....

Good Afternoon Everyone
Hope you are all well today. Just popped in to say Hi and nudge this very worthwhile thread up a little. This terrible disease seems to be quite common with a lot of families so it's nice to look at some of your stories and see how related they are to your own.
Hope you all have a great Day
Hugs
Jackie

Over 2 yrs ago my OH had a brain scan and it showed cerebral atrophy. The doc didnt give it a common name, I dont think they like the term Alzheimers. My understanding is that Alzheimers can only be diagnosed after death, but I tell people that is what he has as most people know what it means. Not everybody is educated well enough to know what cerebral atrophy means.
His short term memory is very bad. He gets so frustrated when he cant find something and I point it out to him in full view, or he does something silly like putting the icecream into the fridge, or forgets that he went for a long walk with his 2 'girlfriends' the previous day. I try to keep him calm as I feel that getting upset cant help him. He likes to play his harmonica and I believe that music can be calming. He also makes a fuss of the elderly cat we adopted last year.
There are times when I have felt 'stressed out' but I try not to show it. His sister has said she will have him if I need a break. I might take her up on that after Christmas unless our son will take him away for a 2 or 3 days.
We are a 25 min drive from town so it is not easy to get any help. Not that he would want it at this stage. He has always been very independent (like his mum). I will just have to tell him not to be selfish if he doesnt want to go to his sisters, as I need a break.
Nice to just talk about it to people who know how it is.

Huia.

Hi Huia
It must be really hard for you having to deal with it 24/7 and I agree you do need a break. You are there for him all the time and I am sure his sister can help you out by taking care of your OH for a couple of days just for you to unwind for a little while.
This illness makes them selfish most of the time. It is part of the illness and we just have to grin and bear it. So you just have to be firm and tell him that you need a bit of space for a few days.

My sister has Power of Attorney over my brother with Dementia and she is constantly dealing with affairs. Although my brother is in a hospital situation she still has to be there for him constantly.
She works full time also. I have just taken her away for a few days just to give her a break from it all. It has done her the world of good she has come back a renewed woman
You have to take care of yourself too so you are strong enough to deal with everything.
Enjoy your break and Merry Christmas to you and your family
Kind Regards
Jackie xxxxxxxxxx

Hi Huia,i know how you must be feeling as my dad has looked after mum for a number of years and he became totally exha,,usted.I helped out as much as i could but he is a very independent person and felt that he wanted to look after her for as long as he could.We could all see that it was all getting too much for him and eventually he gave in. Mum has been in a care home for about six weeks now but since she went in dad has become very depressed,we try to keep him occupied and make sure that he is eating etc.but i think that he feels lost and useless now,i am hoping time will alter that.You must take a break whenever you can .Keep your spirits up and try to have a little time for yourself now and again,after all its a very hard job that you do and you deserve that at the very least.My thoughts are with you.Best wishes Margaret

Thanks for the replies. Most of the time I am fine but I will definitely have a break some time. At present I am re-covering our settees which had torn covers. He is helping when asked.
I have also made some Christmas cards today. I usually do it much earlier than this and make matching envelopes but I am afraid they will have to be bought envelopes this year. For the cards I use laser copies of paintings my granddad did many years ago (for relatives in one line). For others I find old photos to use copies of. I enjoy making them.
Huia.

Just thought I would nudge this thread up.
Hope everyone is well
Got a busy few days ahead so I would just like to Wish you all
A Very Merry Christmas and a Happy and Healthy New Year.
Those of you with family who are sick keep your spirits up and I wish you all Positive thoughts

Love and Hugs
Jackie

glad to see the thread is still going

am off to residents xmas party soon

its great they enjoy it and also with encouragement get up ands dance

merry xmas to one and all

lisa xx

I hope everyone has a Wonderful Christmas,even though I'm sure it will be a bit tough for some.
For now Merry Xmas and a Happy New Year
Helen xx

My OH now seems to have a problem occasionally with his longer term memory. He asked the other day how my younger sister was getting on. I had to remind him that she died 22 yrs ago. He also asked a little while back if my mum was still around. She died 16 yrs ago.

I have been singing in a choir for almost 30 yrs but tonight will be my last concert. I was worried all last winter about leaving him alone on a Tues evening while I was at practice in case he managed to set fire to the house. He cant smell things any more and he has this annoying habit of putting his towel on top of the fireplace to dry off after a shower. He has scorched several towels already. If I am not here they could burst into flames. We do have smoke detectors, but I dont know how he would cope if things burst into flames. Our son has offered to have him for a week if I want a break some time, so I might take him up on that as well as the offer from sis-in-law. Two breaks a year would be great.

Huia.

Hi Everyone
Hope you all had a lovely Christmas

I would just like to wish you all
A Very Happy New Year and I hope 2009
will be a Healthy one for you and your Families

Take Care
Love
Jackie

Nudge for LW