Clueless as to my own situation with Mum

[jimbosmith]

My mum is driving me round the bend and I don't know what is going to happen next.

She had been receiving day care 5 days but all of our local homes said she was too hyper (she is to be fair to them). She is unable to take anti psycotics as they set off a series of seizures which have left her with epilepsy. She is wired all day and struggles to sleep a full 8 hrs at a sensible hour even with the help of zopiclone (prescribed sleeping tablet). I had a full nights sleep on Thursday night but since Friday 9 am I have slept about 9 hours in total.

This is having a huge effect on me. I have no life whatsoever. I spend my days on a laptop which I pick up and put down to see to her, and thats usually every 5-10 minutes. I have been by her side every day since 2009 without a break whatsoever. Even now as I type this I am interrupted time and time again so if it is disjointed, I apologise.

I am not sure what happens next and what options are available to me if any at all? I feel like complaining about both her NHS care and social care as they are both inadequate. Whilst my mum was forgetful before she started taking meds in 2008, she wasn't this wild crazy anxious energetic person. Mums forgetfulness is no longer the problem, her wild energetic behaviour is. As for Social care, well they just don't seem to care full stop.

The last 3 years in particular have been a struggle, but I feel like I am close to losing the plot myself these last few weeks. My own health is poor as I have no time for myself. I am about 100lb overweight and the stress is killing me.

If my mum was just calmer it would be so much easier. I could have a bit of time to myself and relax.

If the local care homes don't want her as a day patient, how would they handle her as a full time patient? Is there some super knock out drug that comes into circulation upon us handing over a load of money to them?

She is now at a point where she has no memory. What will this mean going forward? In my mind that must mean that her overall health will deteriorate from here on in but with the meds she is on she has never been physically fitter in term of energy levels and mobility.

I have a meeting with her specialist this Wednesday. I'm building myself up thinking if I go batsh!t crazy at him I will get something from it, but in reality I know I probably walk out of there feeling even more dejected than I do now.

Nobody in my life understands this situation. They are all hoodwinked in to believing that some super pill is available and some magic team of helpers take care of her with a click of my fingers.

 

[Tin]

My god, it sounds dreadful for you. my mum is a little hyper sometimes and find it difficult to deal with, especially at night, but she does calm down sometimes and I can at least get some nights when we both sleep and its nothing like you have described. You should go a little crazy, there must be something the consultant can do. I sometimes give mum 1mg Lorazapam, but its got some odd side effects on her the morning after, so I am pestering for them to let us try something else.

Fingers crossed for Wednesday, push as much as you can.

 

[Hair Twiddler]

HI Jimbosmith,
Oh my goodness your situation sounds bad. I've looked at your earlier posts and notice that you mention your Dad. How is he coping with your mum and her situation? Do you both have an open dialogue with mum's doctor?
It sounds to me that you really need to write a long list of specific issues that you/your mum needs help with to give to the consultant - don't walk out just hand the list over, tell them that you are at your wits end and here are your issues.
Have the courage to say "I will wait here until you have the answers for me" - then try ( v v v hard) to stay silent until they DO come up with answers. It will be far harder for them to placate and fob you off with promises if you stay silent or simply say "no, that is not enough" - easier said than done I realise but if you leave frustrated without some assurances - it's a lost opportunity.

 

[AlsoConfused]

Agree with Hair Twiddler.

 

[jimbosmith]

Thanks for the replies.

It's taken me a while to come back on as we've been having some sleepless nights, including tonight, and it's just left me shattered.

The appointment didn't happen as my car broke down on the day so couldn't get her there in time. It's rescheduled for 2 weeks time.

My mum also takes Lorazepam and has 2 x 1mg daily when required, which happens to be 5am this morning. She also takes Zopiclone 1 x 7.5mg at night to help her sleep, but it's not as effective as it once was. She takes 2 x 500mg Kepra for Epilepsy which was caused by the antipsychotics she was taking for a short while. She also has 1 x 20mg of Memantine for the Dementia.

For the last few years my Mum has been on what I can only describe as a chemical high. Although i've never tried it myself she reminds me of seeing someone on Speed. She is very much like the character in Trainspotting who is having the job interview that he doesn't want to get.

What side effects does your Mum have Tin?

Thanks Twiddler. I'm afraid my dad isn't coping well at all. Mum woke us up at 4am this morning and his first words to me are 'it's time she went in a home'. If my mum wasn't on this chemical high and was relaxed instead, we could deal with the forgetfulness.

To be honest I have given up on the Dr as he mentioned that there was little else left to try after the antipsychotics. The specialist is similarly useless.

I will try that on my next visit. Just say to him she is too wild and we need to calm her down.

In the last half hour its taken me to write this post she has tried to get up every minute and in a rapid manner. She is also talking non stop. She talks so fast she doesn't catch a response.

I feel for everyone on here who has to deal with this awful disease.

If my mum was to go into a home is there a drug they would give her to calm her down as I've not seen someone as hyper as her when I went to day care (hence why she has been bared by all the care homes in our area).

 

[Kazza72]

Aaaah jimbosmith, sorry life is so rubbish for you right now. I can sympathise to a degree although I imagine your mums energy levels are a bit high than my mums. I have to luxury of working during the day so that's an escape for me.i know I'm not going to get much sleep this weekend either and I could so do with it. I really hope you get a solution. Would be great if they could prescribe your mum a drug that would chill her out a bit even if just to give you a decent nights sleep


Sent from my iPhone using Talking Point

 

[marionq]

My husband takes Zopiclone but needs Trazodone twice a day to make it effective. We only have a rare disturbed night now. Without that I could not and would not continue.

 

[jimbosmith]

Thanks for the replies.

I have been doing a bit of research and there are some who suggest that the anti anxiety meds actually cause anxiety in the long run. Has anyone any experience of this?

http://www.patient.co.uk/health/stopping-benzodiazepines-and-z-drugs

The epilepsy medicine also has it's issues:

http://www.epilepsy.com/node/991995

Has anyone any experience of withdrawing the medicines? I am tempted to ask for that on Wednesday when I see the specialist. Is it worth ringing my GP as well or best wait for the specialist?

My dad and I have taken off the door handles in our front room so that we can sit down without having to keep getting up chasing her around.

Does any one else have any handy tips in this kind of situation?

 

[Englefield]

I do feel for you all. Your situation is actually impossible to cope with, without more help and support. I really hope that you find a bit more support and a way to cope during this awful phase. Such a cruel disease.

I am also struggling just now with my lovely Mum. But she, at least, is not hyper. However, she is with me 24/7. I just cannot persuade her to give a day centre a go. We have carers in to help with Mum's physical care, for half an hour in the mornings, but I do the rest of it during the days and nights.

Good luck with everything.

My mum is driving me round the bend and I don't know what is going to happen next.

She had been receiving day care 5 days but all of our local homes said she was too hyper (she is to be fair to them). She is unable to take anti psycotics as they set off a series of seizures which have left her with epilepsy. She is wired all day and struggles to sleep a full 8 hrs at a sensible hour even with the help of zopiclone (prescribed sleeping tablet). I had a full nights sleep on Thursday night but since Friday 9 am I have slept about 9 hours in total.

This is having a huge effect on me. I have no life whatsoever. I spend my days on a laptop which I pick up and put down to see to her, and thats usually every 5-10 minutes. I have been by her side every day since 2009 without a break whatsoever. Even now as I type this I am interrupted time and time again so if it is disjointed, I apologise.

I am not sure what happens next and what options are available to me if any at all? I feel like complaining about both her NHS care and social care as they are both inadequate. Whilst my mum was forgetful before she started taking meds in 2008, she wasn't this wild crazy anxious energetic person. Mums forgetfulness is no longer the problem, her wild energetic behaviour is. As for Social care, well they just don't seem to care full stop.

The last 3 years in particular have been a struggle, but I feel like I am close to losing the plot myself these last few weeks. My own health is poor as I have no time for myself. I am about 100lb overweight and the stress is killing me.

If my mum was just calmer it would be so much easier. I could have a bit of time to myself and relax.

If the local care homes don't want her as a day patient, how would they handle her as a full time patient? Is there some super knock out drug that comes into circulation upon us handing over a load of money to them?

She is now at a point where she has no memory. What will this mean going forward? In my mind that must mean that her overall health will deteriorate from here on in but with the meds she is on she has never been physically fitter in term of energy levels and mobility.

I have a meeting with her specialist this Wednesday. I'm building myself up thinking if I go batsh!t crazy at him I will get something from it, but in reality I know I probably walk out of there feeling even more dejected than I do now.

Nobody in my life understands this situation. They are all hoodwinked in to believing that some super pill is available and some magic team of helpers take care of her with a click of my fingers.