Hi everyone I’m new to this forum,
My Mother had dementia and my daughter is her carer, and has been for the past 3 years.
So to cut a long story short, we are at the end of our tether and cannot manage my Mother.
I have had to ring emergency services on a number of occasions because of my mum’s violent and abusive behaviour, my daughter rings me crying and having panic attacks as she does not k ow what to do?
My mother constantly stays in bed eating all her meals in bed, food is dropped everywhere and she will not wash at all, has not had a bath in 3 years she has got all the equipment to help her into the bath etc. (Electric Bath seat) which has never been used.
We cannot force her to do these things, she also has a very nasty bed sore on her backside covering a very large area, we have taken her to docs about 2 months ago she was given anti biotic cream and oral anti biotics as the doc said it is infected.
She will not use the cream or take the pills and uses excuse after excuse we are now worried about sepsis!
Today I Contacted the older people’s mental health team (Memory clinic) who are involved in her care.
I explained that she is at risk in so many ways t(oo many to mention here) and feel like we are not managing, I questioned detaining her in hospital under section 3 for treatment?
He wrote back to me saying he has referred her to their occupational therapist.
I am so confused as to what she can do for my mother? Has anybody had experience of this? And why are they so reluctant to detain her for treatment? As I feel this is a case of serious self neglect?
Am I being wicked and cruel I feel guilty for saying it but we cannot cope it’s making me and my daughter ill.
Thankyou for any advice in advance.
I’m dismayed that your daughter is subjected to such treatment. NO ONE should be expected to tolerate this.
You are asking the wrong people I’m afraid. Ring Social Services tomorrow, explain that you are going to withdraw any support because of mum’s behaviour. That they must step in with either emergency carers or emergency respite. They can detain her in hospital if she is a danger to herself or others.
Thankyou so much for your reply, social services are already involved but they are not doin much I feel like nobody is listening to us? Do u know why MHT have invited oc upational health?
Why do u think that they do not want to detain her for treatment?
I’m just so confused as what to do for the best?
Yes my daughter does live with her. And they just keep giving her the same people like occupational therapists from different depts. Over and over again she has seen so many of these people, I really dnt know how they can help when my mother is rotting away in her bed and refusing all treatment?.. She will end up with sepsis!! Sorry if I sound ungrateful and harsh but we are so fed up after 3 years of no real help!
It is my understanding, that MH teams are multi-disciplinary and in complex cases (disabled, elderly etc) they will assess and support using a range of professionals.
If you and your daughter have had enough and are no longer able to care as your Mum’s needs have become too great, ( which is perfectly understandable and ok to admit:) then it is time to let the teams involved with your mother know that.
Could your daughter go on holiday or stay with you or friends? What is her life plan?
There are reasons why my daughter cannot come back to live with me, just to much to explain.
My mum’s rents her flat from the local authority and my daughter has been living there for 3 years and has done so much to the house she would like to stay there.
If my daughter went on holiday for a week would they put something in place to care for my mum while she was away?
What if she stayed but told the social services she cannot cope so she can’t look after her anymore?
Sorry it’s taking me so long to reply, I’m not getting notifications which means I do not know I’ve got replies.
I cannot add any advice Jackie but I am in a similar situation to your daughter.
My husband is 80 and has moisture lesions and now has a grade 2 pressure sore. Trying to get him to apply the creams and let me do the dressings is a nightmare. I worry too about Septis. This has been going on for 18 months and we did have a nurse visit 2x a week - it is down to once a week now due to his ‘non compliance’. I cannot force him beyond a certain level as worried he will lash out. Your daughter and i are not medically trained and I would imagine she goes through the stress I go through when I worry it is getting worse. I too worry that people may think he is being neglected and have written to his GP stating the situation and that I will not put myself physically at risk.
Can your daughter see her GP and stress how this is affecting her physical and mental health? If your daughter lives with your mother then she will be the one that needs to move out. Also if your mother did go into long term care, would your daughter be able to stay in the house anyway long term?
I think my husband is self neglecting but trying to get anyone to help him is almost impossible as he has ‘mental capacity’ and would not go into hospital even if it were offered. I think the NHS are now terrified of being sued and will not section someone even if they are a risk to themselves. It has to get to crisis point and it will if it turns into sepstis.
Hi Helena _1512,
Sorry not sure if this is your name?
The situation my daughter and u are in is awful, I feel your pain.
Its like your going mad, does your husband have dementia? How can they say someone with dementia has capacity?? It’s beyond me? And I agree with u about the neglect but what do u do when they won’t comply? My mum had nurses coming round after she broke her hip in a fall in the house, and they comply with them which makes it look like your lying, and my daughter was so paranoid when they came, she felt they didnt believe her, as my mum is so fake in front of the medical profession.
You have done the right thing to explain to your gp, we do at every opportunity we get too! Lol.
My daughter has seen her gp on so many occasions but they just look sympathetic and that’s it!
I’ve had to phone ambulance and police when my mum is violent and my daughter can’t breath due to panic attacks.
Hope your husband gets help soon, have u Contacted social services?
Yes it is very hard. In fairness, we had a Senior Nurse out earlier this year and when I saw her out she did say that none of the nurses had expressed any concern with regard to my caring for husband - most realise he is very difficult. He sleeps on the sofa attached to the headphones. Yes, I have suggested we move things around so he can have a bed in the office but he won’t help clear out all of his old computers/printers/video etc. I am worried about the new pressure sore but very little I can do apart from prompt him to put the cream on as a dressing would be so difficult.
I have not contacted Social Services - no point as he has mental capacity at the moment. Also he can be very verbally abusive. I am not in a financial position to leave so have to get through each day as I can. My husband has not been diagnosed with dementia but when he had the brain heamatoma back in 2013, he had considerable brain atophy even taking his age into account so doubt it has improved. I cannot push for a diagnosis. I am extremely wary of upsetting him as we are together 24/7 - I am much younger.
I wish I could offer advice to your daughter. The only thing I could suggest is maybe she go on the waiting list for a Housing Association Flat? Might be worth her contacting CAB? Get the GP to say it is affecting her mentally to stay? I would imagine that the police will eventually push SS if they keep getting called out.
I do think they will eventually section your mother but it does take time.
I’m new too. You feeling guilty is a waste of good energy. You are not guilty. I deal with emotions by compartmentalising, being subjective and emotionally distanced. It works for me. Totally honesty is very difficult to handle and is often body-swerved. So it catches a person out later down the line. I so wish I had been stronger and more pro active years ago, but I didn’t want to upset the apple cart.
Do you take video evidence of the situation? I have started to record stuff in case I need proof later. Bowlingbun is so on the ball. Keep badgering the services, keep a detailed record of every call made: date, time, name, length of call, précis of discussion unless you do shorthand. I prefer email and text, written proof. Build your own case about the professional help or lack thereof. I even tell them as I write it down “hang on, let me write this down. Sunday 11th August, 16.12. Oh, how do I spell your name? What is your position?” They don’t always like that, keep them on their toes. I also open the conversation asking if the call is being recorded.
I was complained about by 2 carers visiting mum for videoing her room. I had asked them permission to film the room, they said yes. I offered to show them the phone, in case they were not happy about privacy, they declined. I get a call from the office demanding I do not film the staff. That makes me wonder - why?
Be strong, research, find out as many rules, regs and rights as you can, talk with anyone you know in the related field who may guide you, like solicitors, nurses etc, take control. We are numbers in a crashing system that must be processed, that’s all. So, stand out, be a pain, get results.
I’m at the beginning of what may be a bloody battle too. This seems to be a great supportive site, I’m with ya. Get that armour on.
Responding to the original post, I gained a MH assessment a few years ago for my mother, whilst she was living on her own. I had expressed concern about executive skills; memory was fine. But the assessment tested what she was still good at - her memory. They therefore avoided making any diagnosis. It might be Social Services are skirting around the issue of MH assessment by referring to Occ Therapy, because of funding.
I had some useful insight into the situation from a carer recently. They said, for a person living on their own, once a diagnosis of a serious illness is made e.g. dementia, it then the responsibility for their care falls upon the NHS. Until that point, it is Social Services. Whilst your daughter is caring for your parent, it isn’t an issue. But once she relinquishes because she understandably can’t cope, then effectively your parent will be on their own without care, & it therefore becomes the responsibility of the NHS to look after someone with dementia. It is perhaps why they don’t want to diagnose loss of capacity, & why they are trying to pursue other routes like offering further equipment to see if that could help your daughter cope more.
I just see it as a symptom of the bigger crisis; that it’s seriously underfunded for the full & thorough job of caring for our elderly,& doing what the government have deemed should be done. There just isn’t the money to do what the law says.