Oh dear, what can I do for mum?

[Sunbell]

My mum has had AD for quite a few years and went into a care home 18 months ago. Because of my own disabilities she and myself came to realise we could no longer manage and I was unfortunately unable to give her the 24/7 care which she needed.

She settled in smashing and joined in with the other residents where possible and was always very friendly and kind to everyone and was well liked by the staff.

Over the last 6 months we have noticed big changes, and this last 2 months has been terrible. I know it is the AD which has caused such a rapid change and she no longer resembles 'my mum' at all.

She has become incontinent, hallucinating, talking to people who aren't there. She thinks the staff and other residents hate her and she is always crying and saying she has done nothing wrong. Won't leave her room, thinks people are stealing from her. I could go on and on!

Mental Health doctor put her on sertroline to try calm her and mementine, now increased to 20mg). He is coming to see her again in 2 weeks but care manager said she would phone Monday to try get him to come sooner. Even she said it is cruel to have someone suffer like this. Had test for UTI but clear this time.

I visit most days and have brought mum home once a week but last three weeks haven't brought her home as she started being awkward with me at home and wouldn't let any of us help her (she has difficulty walking) and insisted on going to loo by herself which my daughter helps her with here at home as I am unable to, and caused havoc in bathroom. Fell through being obstinate with me and I was all the rotten **** under the sun. It upset my grandchildren, they were in tears so I decided I couldn't risk this anymore. It has all upset me so much I can't stop worrying and hardly sleeping at all.

She calls me 'Mum' which is so very sad but I realise now that this is not my mum, it is the disease talking.

Care home ring me when she is very upset and anxious and they are finding it difficult to calm her down but if mum comes on the phone she has hearing difficulties and can't hear me, she just cries and says everyone hates her. My son played heck with me and said I should tell them not to ring me as I get upset and he says she is in care and they should be seeing to her but my argument is that even though she is in a care home, she is my mum and I love her to bits and if I can help to calm her then I will. I am so upset and wish everyone would just leave me alone to care the best way I can. Not sure of the stages in AD but believe she must now be around the 6 stage.

Sorry for the long rant but just need to know there are others out there coping and understanding the same problems as me, my family and mum. When will this agonising journey through life ever end? Is there a God, if so why do people have to suffer this extremely cruel illness? I hope he is up there somewhere as I pray to him every night hoping one day he will answer me. Take care everyone. Sunbell xx

 

[FifiMo]

Hiya Sunbell,

Based on our experience with my mother, who had all the symptoms that your mum is displaying, the solution was to use medication. It takes some trial and error to get the right combination of medication and the right dose also, but eventually they sorted my mother out and she no longer had the paranoia or hallucinations. There was a price to pay for this however as her speech deteriorated slightly, but heck, it was a price worth paying to see her happy and free from all the stress and debilitation.

If your mum has difficulty hearing on the phone, then I wonder if there is another way to communicate with her when she is upset. Could you perhaps leave some cards or notelets with the staff at the home to give to her to open and they could read out a nice message from you perhaps. If this is successful, then you could also perhaps leave her little gifts that have been wrapped up for her. Doesn't have to be anything expensive maybe a bag of sweets, or a box of tissues, or a magazine. The wrapping it up is the main thing - lets them know they haven't been forgotten and that people are nice to them too. It would also be something that the carers at the home could use to interact with her more too.

Another thing that you could think about trying is doll therapy. There have been some amazing results in pacifying people and reducing their stress when they have been given a doll (baby) and asked if they could look after it for a while. It can also be used to help modify behaviour too - eg - don't cry because the baby is getting upset!!! My mother had a doll that she took everywhere with her and took responsibility for it too. All in all, it gave her a sense of purpose and the nurturing is an instinct and so is often not even affected by the dementia. You don't need to spend a lot of money on a doll - the charity shops often have them for just a few £££s. You can casually introduce her to the doll by asking if she could keep an eye on the baby for a few minutes. If it doesn't work it is not a problem is it - at least its something you have tried and are able to dismiss.

Hope this helps,

Fiona

 

[Sunbell]

Hi Fiona,

Thank you so much for these ideas to try help my mum. I have a lovely little doll upstairs which was my daughters so I will take it today and give it a try.

I am hoping mental health doctor can come sooner than arranged to see to her medication again and see if this helps.

Lets be honest, we will try anything at all to try and pacify her and help her through this horrible phase of the disease.

Thank you for replying and your good suggestions. Will keep updating to see if anything helps.

Take care and Happy New Year to you and your family Sunbell xx

 

[Sunbell]

Baby Doll Therapy. anyone tried it?

I took Fiona's advice and took the baby doll to mum.

I took it from my bag and quietly cuddled it. As soon as she noticed her face lit up and was very eager to hold it. Well her conversation with 'the baby' went on for ages, you could see the pleasure in her eyes.

My daughter was with me and mum believed it to be her baby so daughter said she would like baby to stay with Nana a while to keep her company and it would be doing her a big favour. She was delighted. (Just one problem lol, mum tried to tell me she would phone me if baby cried too much and we would have to come and see to it! Bless her.)

Well, we can but try the doll therapy, you get nowhere without trying. If it turns out it doesn't work well we are all doing our best. Will try anything if it brings a bit of happiness into her world.

Thanks Fiona for this suggestion. Sunbell xx

 

[FifiMo]

Awwwwww, bless her. Only thing I would do now is make sure the carers give her the doll and they don't just ignore the pleasure she gets from it. Isn't it amazing how they will hold conversations with the baby? With my mother it somehow unlocked the dementia a bit and you could see some of the old self shining through.

Hope the doll continues to give your mum some comfort Sunbell,

Fiona

 

[Sunbell]

Oh yes Fiona, she showed off the baby to the carers and let them all have a cuddle and they wrote it in the daily record book that we were trying this therapy

Thanks again, Sunbell xx

 

[brookbond]

Hiya Sunbell,

Based on our experience with my mother, who had all the symptoms that your mum is displaying, the solution was to use medication. It takes some trial and error to get the right combination of medication and the right dose also, but eventually they sorted my mother out and she no longer had the paranoia or hallucinations. There was a price to pay for this however as her speech deteriorated slightly, but heck, it was a price worth paying to see her happy and free from all the stress and debilitation.

If your mum has difficulty hearing on the phone, then I wonder if there is another way to communicate with her when she is upset. Could you perhaps leave some cards or notelets with the staff at the home to give to her to open and they could read out a nice message from you perhaps. If this is successful, then you could also perhaps leave her little gifts that have been wrapped up for her. Doesn't have to be anything expensive maybe a bag of sweets, or a box of tissues, or a magazine. The wrapping it up is the main thing - lets them know they haven't been forgotten and that people are nice to them too. It would also be something that the carers at the home could use to interact with her more too.

Another thing that you could think about trying is doll therapy. There have been some amazing results in pacifying people and reducing their stress when they have been given a doll (baby) and asked if they could look after it for a while. It can also be used to help modify behaviour too - eg - don't cry because the baby is getting upset!!! My mother had a doll that she took everywhere with her and took responsibility for it too. All in all, it gave her a sense of purpose and the nurturing is an instinct and so is often not even affected by the dementia. You don't need to spend a lot of money on a doll - the charity shops often have them for just a few £££s. You can casually introduce her to the doll by asking if she could keep an eye on the baby for a few minutes. If it doesn't work it is not a problem is it - at least its something you have tried and are able to dismiss.

Hope this helps,

Fiona

Hi Fifimo,
What you describe sounds very similar to my Mum who is displaying more frequent incidents of Paranoia. This ranges from thinking my Dad (who is not in the best of health himself) is stealing her money and she wants to leave home and go live with friends. Do you know what medication was prescribed ?
The doctors dealing with Mum do not seem that proactive in dealing with her condition.

Thanks

 

[FifiMo]

Hiya Brookbond,

I know that haliperidol was prescribed at one stage but if I remember rightly it was discontinued after a while when they found out she was not taking the drugs regularly and they were found all over the house and this was something that shouldn't just be started and stopped every few days. As to the other drugs i'll have to look and see if I can find the report that listed them. I'll see what I can find out and get back to you.

Fiona

 

[thecurs1]

What medicatio

Hi Fifimo,
I've been following this thread as my dad is in care (in France) and he's got to the point where he's in a lot of despair and begging to be allowed to die; he even tries to pour medicines that aren't there into his hand, asking if these will be enough to let him go. He's on a benzodiazepine (French name Lysanxia) but not only is it in liquid form and difficult to keep to the exact dose, it doesnt seem to really touch his state. I dont think its enough. Like Sunbell I'd be very interested to know what meds were useful your mother for anxiety and/or the depression. I'll look up the french name for them. Thanks and all the best, Isanna

 

[thecurs1]

desperate search for medication

Hi Fifimo ans Sunbell,
I've been following this thread as my dad is in care (in France) and he's got to the point where he's in a lot of despair and begging to be allowed to die; he even tries to pour medicines that aren't there into his hand, asking if these will be enough to let him go. He's on a benzodiazepine (French name Lysanxia) but not only is it in liquid form and difficult to keep to the exact dose, it doesn't seem to help much any more. I don't think its enough. Like Sunbell I'd be very interested to know what meds were useful your mother for anxiety and/or the depression. I'll look up the french name for them. Thanks and all the best, Isanna

 

[FifiMo]

For Brookbond and thecurs1

Sorry for the delay in providing you with details of the medication my mother was on but she died a few months ago and I had to get her papers from the attic! The two drugs that were used to great effect with her were Rivastigmine (also called Exelon) and mirtazapine. They seemed to work better if given together if that helps. I hope at least this gives you something to discuss with your relatives medical consultants and that you find something soon that stops them having all the distress.

Fiona