My sister is 69 (a retired deputy head & special needs Senco) was diagnosed 2 years ago, she suffers awfully from hallucinations 24/7 & has dementia.
Her husband has had enough (after 40 yrs) & has told her he is leaving.
He screams at her regularly so much so the police were called yesterday as neighbours were concerned.
I am 200 miles away & am beside myself with worry.
She called me today sobbing saying she doesn’t know what she will do.
What can I do to help?
Thats an awful situation.
Is he the sole carer or do they have outside help?
Iam not in the UK hence not familiar with the system, but I did find this
I would definitely contact one of the helplines to get advice on how best to proceed.
Are you on “speaking terms” with your sisters husband?
Do you know what the police said? They must have seen that matters are difficult.
I can only imagine how helpless you must feel, but hang in there. Sending lots of hugs your way
I’m not able to write a full reply at the moment but I can fully understand how worried you must be, it is an awful situation and you must feel you are a world away. Please ring the helpline 0808 800 0303 for some advice, they are very good and I am sure will be able to point you in the right direction. My immediate thought was that your sister needs an urgent review of her Parkinson’s meds and, if she hasn’t already had one a proper assessment of her home situation - or a review as the situation has deteriorated. Whilst not condoning her husband’s reactions, he is in a difficult position as well and not coping with the caring role which is incredibly hard and one that he probably didn’t see for himself - in a nutshell he is running on empty. He is entitled to a carers assessment in his own right. You too need to take care of yourself, sorting things out from a distance is not easy and whilst I am not suggesting your sister and brother-in-law’s situation is anything other than hugely complex and they are in need of some form of intervention or support, please do try to keep a sense of proportion; it is easy for your mind to go into overdrive and imagine all sorts that isn’t the reality.
Please ring the helpdesk as a starting point and take it from there. I hope this helps a little.
I am so sorry to hear what your sister has been going through.
I have sent you a private message with some advice on how we can help you.
Do get back to us as soon as you can.
The best thing is to see a good neurologist.
Even if you have to see privately, it is money well spent, i only see a neurologist twice every year, I don’t know about the UK, but in Ireland, we can get 20% back as a tax credit for all medical expenses. Because an experienced neurologist would make a huge difference.
Regarding hallucination, if she is on a tablet, after some time, it becomes hard to maintain the desired level of dopamine in the body because the path medicine takes to get absorbed in the bloodstream is the same as for food, and high-protein food reduces its absorption into the bloodstream. At that stage, quantity and type of food become more important, it can result in off-time due to low levels of dopamine, which makes moments difficult, low in mood/v pessimistic.
Check with the Neurologist, she could be better off on the Duo dopa pump, which delivers med directly to the part of the body where med gets absorbed, so less fluctuation in dopamine level. hence a balanced mood.
There is another option recently approved in the UK where med is directly injected in the body and it bypasses food completely. it is for 24hrs unlike a pump which is for 16 hrs and it requires small sargery but one month of admission in the hospital to get the setting right for each patient individual level.
Regarding hallucination, there is an anti-psychotic med that reduces dopamine levels in the part of the brain which is related to hyperbrain activity. It did help me control my unrealistic thoughts. check with the neurologist
No I fell out with my brother in law earlier in year when I went to see them & he was talking to her rudely in which I asked him not to talk to my sis like that! He blew a fuse & refuses to let me in the house!
He has now told my sis he’s not cooking for her anymore or talking to her & wants nothing more to do with her - after 46 years of pretty good marriage I’m so sad for her, I can’t have her live with me as I have an adult disabled son.
I don’t know where to read the private message? Sorry I’m a newbie!
If you click on your profile picture (which is currently the letter ‘S’ in a green circle) at the top right hand corner of your screen, you will see an envelope symbol with my name.
Please click on the envelope to read the message from me.
In case you have any issues with this, I have also emailed you which might be easier.