Hi all, first time posting here as I am unsure where it's best to turn for immediate advice.
My father has early onset dementia, he was diagnosed 4 years ago but think that the condition started earlier than that.
He has this last week he has drastically deteriorated, last wednesday we called the Paramedics as he had become very paranoid and aggressive, threatening to kill himself and no longer believing that where he lived was his home (he has been living there for 30 years so we believe that this must be a sign that the dementia had gone to a fairly late stage now). He has be aggressive physically with my mum in the past due to the condition and has be prescribed anti-psychotics and sedatives.
Now he is just crying, my mum is broken emotionally and physically caring for him. My brother, his wife and myself are doing the best we can but can only be there at certain times. Part of the problem is my dad is an ex-mental health professional so has very vivid paranoia about what is happening to him. Has anyone else had this problem?
My question is what happens next? We are waiting to hear about getting a community nurse allocated to my dad but don't know when this will happen or what happens once we have the allocated nurse.
My mum is refusing help at the moment, she sort of acknowledges we need help but then never actually commits to it.
I just really need some good pointers on where to go and what to ask the nurses at this stage?.
Your situation sounds just like mine a few years ago with my Dad. I wish I could give you some useful advice on who to call but I phoned anyone and everyone I could until someone would do something. The main help was Dads consultant at the memory clinic. I used to phone her secretary and tell her how things really were as mum was not able to say when they went to the memory clinic appointments as dad would say everything was fine even when it was not and shoot mum a look not to say anything. One social worker was excellent and another was completely useless so you need to keep phoning anyone and everyone until someone listens and takes on your plight. I am not the sort of person who makes any kind of fuss usually but my mum was also emotionally drained and felt unloyal to dad when she talked about him to others and I was worried for her safety.
I used to support my mum with dad as he would often get verbally aggressive and physically too with my mum if she got in his way. Mum hid this from me for years though until I noticed some bruising on her face and she told me she walked into the door! He would often become paranoid and try to leave their house insisting he had to go home, wherever that was. Physically he was well and strong at 69 years old ( having had Alzheimer’s for about 12 years) and my poor little mum got pushed and hurt far too much , although but she would call me when things escalated to such a point that I would come flying round and spend hours trying to calm him down or search the streets for him. He always responded well to me and my husband but it was easy for me to come in all calm when I’m not looking after him 24 hours a day. He would say awful things about my mum and even threatened to kill her once and I think he would have done if we hadn’t got my mum back to mine that night and my hubby stayed with him. That was the crisis point and the next day I was on to his consultants secretary at the memory clinic who used to listen to me as I would email her prior to every appointment as dad would not let mum say anything other than there were no problems.
His consultant was excellent and we had lots of visits from the mental health team but he was always ok for them. He was commenced on anti psychotics and diazepam but just seemed a bit ‘drugged’. We struggled on for a few months with me ‘on call’ when needed usually at some point during the day, with several emergencies where the police ( who were wonderful) had to be called ( as I was at work) and would chase my dad down the road on his quest to find home!
In the end my mum accepted she needed help, but really he could be totally lovely most of the time but the aggressive and paranoid outbursts were happening daily. He didn’t need carers as mum was happy to help him shower and dress as he would never have accepted carers anyway or admit to anyone that he needed help. He was commenced on risperidone, but it did not seem to help, as it had once done in the past. So we increased it with the say so of the consultant.
In the end the community psychiatric team cam to assess him following a desperate call from me to his consultant and they suggested taking dad to a secure psychiatric unit. We did not know how he would take it and it was awful as he knew the place and got angry saying “ I’m not a nutter” over and over again and crying. The awareness, I find is the most distressing thing. After a lorazepam and hours later my husband managed to convince my dad to come in with us voluntarily- my mum had to stay out of the way and a lovely social worker supported her. Dad had a terrible and rare reaction to the risperidone increase a few days later and absolutely hated it in the unit but it was the best place for him. They took him off all his meds and gradually got him back on an anti depressant and memantine and despite them saying should go into a care home my mum wasn’t ready for that and wanted him home. So I fought to get him home with the agreement he would have carers and that my mum would admit when things got too much for her.
We had a really good year with dad back home, although he wouldn’t have carers, but it wasn’t without it’s challenges and his aggressive and paranoid behaviour gradually crept back in. I got on to social services in order to assess him for a home but as we were self funding we were left to get on with it and no home would take him due to his ‘challenging behaviour’.
A very good social worker was helping us and she contacted Dads consultant and he ended up back in the psychiatric unit he was in the year before. He went in quite amicably and didn’t look like he should be there as he was very calm and compliant. However, he ‘kicked off’ so badly the next few days that he was constantly drugged and ended up over medicated on diazepam and the antipsychotic olanzapine, and gradually they reduced them to a point where he was able to function without getting aggressive.
He is now in a care home but has deteriorated a lot but is generally in a happy place.
One thing I would say is that you have to fight your loved ones corner every step of the way and that may be too hard for your mum to do so you have to step in. It is helpful if you and your mum have power of attorney over money and health.
Another thing to remember is that although the Drs are the ‘experts’, they do not know your dad like you do and so make sure they talk to you about all treatment and medication every step of the way.
So sorry for the overly long post, I just seem to get carried away but I hope something I have written is of some use to you. Best wishes to you and your family x
