Where to start?

[ElaineW]

Well I was on a very similar website to this 4 years ago when my mum suffered a brain haemorrhage and against all odds survived. Now it looks like its progressed to severe dementia/Alzheimers - I hate the cruel disease which robs so many of their dignity, personality - in fact just about everything. I am due to see the consultant tomorrow who hopefully are going to prescribe Aricept. Life has been very tough for some years now but the last month has taken its toll on me. Mum is 79 and is hallucinating and fixating on things constantly at the moment her cat is always dead or dying - its an elderly but healthy cat. The phone calls can exceed 20 in a very small space of time every day and are now happening after 11.p.m. at night, I can't sleep for waiting for the phone to ring. She lives alone, I am an only child and it's me on call 24/7. I am hoping I can get an antipsychotic drug prescribed along with the Aricept but tbh I think it's gone past the help of a tablet. I have been trying to get help for the last 18 months It's just difficult how to deal with these hallucinations - I have tried going along with everything she says. disagreed but nothing seems to make any difference. Any tips - its wearing me down? I am finding it difficult to understand what she is trying to tell me now - everything just makes no sense or is just muddled. This is the first forum I have been on for help I just middle along, just feel so desperate at the moment. Self care gone out the window too now , argh just one thing after the other. This horrible, horrible disease just takes the person you love away from you so slowly and cruelly. I try so very hard to keep positive but some days just can't. Where is that cure?

 

[Jenijill]

So sorry you are having such a difficult time, Elaine. I'm afraid I don't have any ansers about the hallucinations, my Mum had terrible ones, she was nearly blind too, which didn't help. I just hugged her and tried to keep her calm, but it didn't usually work. It's so distressing. Is it now time to think about care home for your mum? It sounds as though you are at the end of your tether and that's not good, for you nor your mum.

love Jenny and lots of hugs xxx

 

[Jancis]

Hello Elaine, you sound at the end of your tether and I'm so sorry to hear how your mum endured and survived the trauma of a brain haemorrhage and is now suffering from dementia as a result. You are doing all you can by the sound of it, there is no right or wrong way to communicate as everyone is different - the only thing you can try to do is show your love. Even that is hard sometimes when the one you love is changing in so many ways. You will find this forum an amazing life line of support - and I just wanted to say welcome. I wish you good luck tomorrow and hope the consultant is able to help with medication as first step.
Jancis x

 

[chris53]

Hello Elaine, a warm welcome to Talking Point, I am sorry your mum has this unforgiving illness which takes many forms and you never know what is going to happen next, I too am a only child, at the beginning mum would call time after time and the only way I could stop this was to put a message on the answer machine, saying "hello mum thank you for calling if you need anything leave me a message if not i will call you tomorrow" after a few days that seemed to work but also the doctor put her on antidepressants which helped and now she is also on Aricept, although she still gets fixated on things but she was like that before Alzheimer's please tell (not ask) the consultant that YOU must have help to help your mum don't be fobbed off and let things drag on any longer, please also see mums doctor and explain what has been going on and that you are finding it hard to cope so an assessment must be done soon, good luck tomorrow, please keep posting and you will find understanding and support here whenever you need it.
Chris x

 

[ElaineW]

Hello Elaine, a warm welcome to Talking Point, I am sorry your mum has this unforgiving illness which takes many forms and you never know what is going to happen next, I too am a only child, at the beginning mum would call time after time and the only way I could stop this was to put a message on the answer machine, saying "hello mum thank you for calling if you need anything leave me a message if not i will call you tomorrow" after a few days that seemed to work but also the doctor put her on antidepressants which helped and now she is also on Aricept, although she still gets fixated on things but she was like that before Alzheimer's please tell (not ask) the consultant that YOU must have help to help your mum don't be fobbed off and let things drag on any longer, please also see mums doctor and explain what has been going on and that you are finding it hard to cope so an assessment must be done soon, good luck tomorrow, please keep posting and you will find understanding and support here whenever you need it.
Chris x

Thank you for your prompt reply, so many others of us out there in the same boat by the look of things on this site and I must say my husband and I both liked the idea of the answer phone message. Mum has been started on Riminyl today but I know that only 50% of patients show any improvement so just hope that my dear mum is one of the lucky ones. its just so apprehensive from one day to the next wondering what the day will throw at you and if you can deal with it. Will also be taking steps re an assessment. She had one a year ago and was told borderline then which was ridiculous so I don't have much time for them I am afraid Just wish the hallucinations if nothing else would stop - its so distressing. I will keep you updated. x

 

[Izzy]

It must be so hard for you all Elaine. My mum only suffered a short bout of hallucinations and I know how hard that was to cope with.

I'm glad you've joined TP and I hope you find lots of help and support here.

Take care. x