Who is going to take Dad?

[Red66]

My first time posting.

My Dad got sectioned in November, could walk, didn't hallucinate and wasn't aggressive. The first week he was in the unit he was restrained and put in seclusion for attacking and head butting staff, this happened daily.

Then was experimented on with different meds, now my Dad hallucinates all day and night, can't feed himself, doubly incontinent, and worst of all can't walk. He now doesn't know who we are, says hello mate to me, his daughter, but doesn't know me really, can't place how he knows me.

Yet, still the aggression remains.

He gets moved about in a wheelchair and a hoist now into bed/chair but still lashes out, grabs, squeezes and scratches. I just don't know what emi nursing home will take him as when I have visited such homes they say we don't take challenging aggressive behaviour.

What a joke?

Dad already had Alzheimer's and Vascular Dementia, now we were told 2 months ago that he has Lewy Body Dementia too. Problem is some people with lewy body are sensitive to meds and they hallucinate more and have muscle stiffness, and that is my Dad! Nothing is helping with the aggression as his hallucinations are so distressing for him.

Poor guy doesn't stand a chance. It's only been 3 months from showing some symptoms to being horrendously ill. I just wonder how long he has left as we are at the stage of thickening drinks already. Clenches his teeth to stop drinks going in as he is frightened to swallow. Refuses most times to eat too and gone to 8st 12.

Finding it far top stressful watching mum crumble after 50 years of marriage and I have a 1year and a 3 year old.

Dad is only 73.

Red

 

[gsingl]

My first time posting.

My Dad got sectioned in November, could walk, didn't hallucinate and wasn't aggressive. The first week he was in the unit he was restrained and put in seclusion for attacking and head butting staff, this happened daily.

Then was experimented on with different meds, now my Dad hallucinates all day and night, can't feed himself, doubly incontinent, and worst of all can't walk. He now doesn't know who we are, says hello mate to me, his daughter, but doesn't know me really, can't place how he knows me.

Yet, still the aggression remains.

He gets moved about in a wheelchair and a hoist now into bed/chair but still lashes out, grabs, squeezes and scratches. I just don't know what emi nursing home will take him as when I have visited such homes they say we don't take challenging aggressive behaviour.

What a joke?

Dad already had Alzheimer's and Vascular Dementia, now we were told 2 months ago that he has Lewy Body Dementia too. Problem is some people with lewy body are sensitive to meds and they hallucinate more and have muscle stiffness, and that is my Dad! Nothing is helping with the aggression as his hallucinations are so distressing for him.

Poor guy doesn't stand a chance. It's only been 3 months from showing some symptoms to being horrendously ill. I just wonder how long he has left as we are at the stage of thickening drinks already. Clenches his teeth to stop drinks going in as he is frightened to swallow. Refuses most times to eat too and gone to 8st 12.

Finding it far top stressful watching mum crumble after 50 years of marriage and I have a 1year and a 3 year old.

Dad is only 73.

Red

Hi Red

My gosh, your experience sounds almost exactly the same as mine. My dad is the same age and was sectioned last year - his health dramatically declined and he was restrained regularly. It was awful to watch. We're at the point now where he needs to go to a high management care home, so if you do want to talk further about our experience, then please do let me know. It's a long story, but sounds extremely similar in terms of symptoms, behaviour, diagnosis etc. Would be amazing to share for me too.

The bottom line is that the NHS will try to balance your dad's medication, but you are right, each diagnosis of dementia is so specific to the person, that it's almost impossible to get medication right. And be prepared to wait - it takes about 6 weeks for any change in medication to take affect in the body apparently, again something we didn't know until later on in dad's time at the assessment centre.

It is totally traumatic, and I am there with you in mind. Do keep talking though. I've only come across these forums today too, and already feeling like it's a great place to share.

x

 

[Red66]

Oh Red how horribly distressing and heartbreaking. I don't have any advice for youbut I am sure there will be other TP'ers who will. Just wanted to say that thoughts are with you and I hope you get the help for your Dad you so desperately need.

Many thanks for your kind words

Red

 

[Red66]

Hi Red

My gosh, your experience sounds almost exactly the same as mine. My dad is the same age and was sectioned last year - his health dramatically declined and he was restrained regularly. It was awful to watch. We're at the point now where he needs to go to a high management care home, so if you do want to talk further about our experience, then please do let me know. It's a long story, but sounds extremely similar in terms of symptoms, behaviour, diagnosis etc. Would be amazing to share for me too.

The bottom line is that the NHS will try to balance your dad's medication, but you are right, each diagnosis of dementia is so specific to the person, that it's almost impossible to get medication right. And be prepared to wait - it takes about 6 weeks for any change in medication to take affect in the body apparently, again something we didn't know until later on in dad's time at the assessment centre.

It is totally traumatic, and I am there with you in mind. Do keep talking though. I've only come across these forums today too, and already feeling like it's a great place to share.

x

Hi gsingl.

Thank you for your words. High management care home, I will look into that. What worries me is that Dad is now wheelchair bound and you hear of patients who can walk lashing out at others, I know as my Dad was one of them in the MHU. He was grabbing at patients next to him and kept having to removed into a room on his own. All though 2 and half months on wheelchair bound.

He isn't quite so bad now as he is on anti psychotic quetiapine which I hate but it has settled him slightly. Tried others haloperidol, risperidone all with negative effect. He is also on lorazepam and mirtazapine, all of which has made the dementia far worse in my opinion but the consultant has none of it.

You're not meant to give patients with lewy body dementia risperidone in the first place and also you're meant to be careful when giving it in conjunction with lorazepam as the side effects of aggression, confusion and anxiety are heightend!!! If I can find this stuff on the net why doesn't the Psychiatrist know!!!!! Making myself angry thinking about it!!!!!!!!!!!! Patients who suffer such symptoms they give drugs to make worse. Crazy.

Red

 

[gsingl]

Hi gsingl.

Thank you for your words. High management care home, I will look into that. What worries me is that Dad is now wheelchair bound and you hear of patients who can walk lashing out at others, I know as my Dad was one of them in the MHU. He was grabbing at patients next to him and kept having to removed into a room on his own. All though 2 and half months on wheelchair bound.

He isn't quite so bad now as he is on anti psychotic quetiapine which I hate but it has settled him slightly. Tried others haloperidol, risperidone all with negative effect. He is also on lorazepam and mirtazapine, all of which has made the dementia far worse in my opinion but the consultant has none of it.

You're not meant to give patients with lewy body dementia risperidone in the first place and also you're meant to be careful when giving it in conjunction with lorazepam as the side effects of aggression, confusion and anxiety are heightend!!! If I can find this stuff on the net why doesn't the Psychiatrist know!!!!! Making myself angry thinking about it!!!!!!!!!!!! Patients who suffer such symptoms they give drugs to make worse. Crazy.

Red

Hi Red

I know, it's extremely frustrating not quite understanding what the consultants are doing and why. We totally feel the same. My mum's tried to keep track of the different drugs, and it transpires that the Parkinson's medication Dad was on for 12 years caused his psychosis, so the consultants have now completely taken him off Ropinirole - however, this has caused him to also become wheelchair bound as his Parkinson's has obviously got worse, but for the time being the hallucinations seem to have lessened slightly. He can still be extremely paranoid and think we are lying about everything.

So my Dad was allocated a place at a normal care home, which he went to and it was very quiet and relaxed environment, which was a welcome change from the assessment centre. HOWEVER, after only 3 weeks he became extremely distressed (this was still when he could walk and move around) because he was so disorientated and hated being there. So the home basically put their hands up and said they couldn't cope with his aggression. So he had to go BACK to the assessment centre, resulting in a massive deterioration because Dad thought we were deliberately deserting him and locking him away again. It's just such a vicious circle and unfortunately the NHS screwed up by sending him to a care home that could not cope. So that is one warning to you! Off the back of this, Dad's been taken off the Ropinirole drug and is now almost totally immobile, in a wheelchair and the worst he's ever been. Because of this, we have seriously pushed the NHS to move Dad to a high management home, one of which is fortunately located near to us (he's an hour away from us at the moment in the assessment centre).

The high management places are more expensive (an issue for the NHS), but because it sounds like both our Dad's are purporting challenging behaviour, you will have a good case for choosing one of these more supportive homes. So look in your local area for either a Bupa (which the NHS can pay for) or high management place, don't settle for something you're not happy with and MEET the managers of these places. We've found a manager who is being extremely sympathetic to my Dad's needs, and fully understands that he will without doubt be aggressive and not able to move around on his own. But they're prepared to work with him. I'm not saying him moving to this place is going to be easy (he moves next Monday), but over these agonising months we've found a home that we really hope will work for us.

I do hope this helps. Because I would hate for your Dad to be sent somewhere that isn't right first time round, because it is extremely distressing for everyone, and it will really negatively impact him if he has to come back to the assessment centre if the home doesn't work out. So hang on in there and choose wisely.

xxx

 

[Crunchy]

How traumatic for both of you, it must be so distressing seeing your parent becoming aggressive.

I completely agree with your comments about the medication information Red. I had absolutely no joy trying to discuss antipsychotic and antidepressant drugs with my dad's psychiatrist or CPN. I repeatedly asked them to try to wean him off some of them as I could see the side effects after each dose clearly, all to no avail.
Mentioning all the medical references and NICE guidelines also drew zero response from them. It got to the point where I almost stopped battling with them and simply left it in their hands, as the stress was getting me down so much.

My father was only given a formal diagnosis a year after he was sectioned, and only then because the residential care home he was in demanded I move him to an EMI unit, but the latter refused to take him without a diagnosis. So I had to get stroppy with the Psychiatric team at that point, and even then they didn't mention Lewy Body Dementia despite his main symptoms. Utter chaos.

Moving my dad to an EMI unit was actually great, as ALL the staff were used to dealing with erratic behaviour, so he got lots of really positive feedback from everyone, rather than being ignored a lot for being "odd" at his previous care home.

Best of luck and hope you find somewhere soon x

 

[Red66]

We have found a Bupa EMI nursing home local already, the problem is our social worker said that he had someone already who was challenging like my Dad and they turned this person away as they didn't have the staff!!

Spoke to the MHU this morning where Dad is and it takes them 3 people to get him up out of bed to get washed and dressed and to even take him the toilet!! He has to be fed but the rest of the day he doesn't need 1-2-1.

I believe we are going to have the same issue wherever we can find him with staffing levels. My Dad's needs are high but so is his aggression, sadly.

He would be mortified if he knew how he was behaving.

Red

 

[Northernmonkey]

Hi Red66,

I've read your posts with interest as I am finding myself in a similar position.

My mother has just been sectioned 2 and has not settled at all in the unit. She's gone from a being fairly placid to an angry almost violent person in less than a week, the difference in her is staggering. I have fears that she will just get gradually worse while in there and all she wants to do is find a way out of the building to go home and is working herself up all the time.
I appreciate she is still being assessed but I have these horrible thoughts that no matter what the prescribe, she will never come out of the place. She has been given drugs to try and calm her down but these are yet in her system.
This disease is a nightmare but glad I've found this site.

 

[Kevinl]

Hi Red66,

I've read your posts with interest as I am finding myself in a similar position.

My mother has just been sectioned 2 and has not settled at all in the unit. She's gone from a being fairly placid to an angry almost violent person in less than a week, the difference in her is staggering. I have fears that she will just get gradually worse while in there and all she wants to do is find a way out of the building to go home and is working herself up all the time.
I appreciate she is still being assessed but I have these horrible thoughts that no matter what the prescribe, she will never come out of the place. She has been given drugs to try and calm her down but these are yet in her system.
This disease is a nightmare but glad I've found this site.

Hi Monkey, welcome to TP
I don't want to hi-jack the original thread but I thought I'd say hello.
As your mum is has only been there for a week it's early days. My wife's been under a section 3 for the past 2 months and I've seen a few people come and go in that time. After a while most seem to settle in but some never do, until they're settled it's difficult for the staff to do an accurate assessment of her needs.
All I can say is give it time, it does seem like the people less severely affected are the ones that are most affected by being in a unit like this.
K