How long to stabilise challenging behaviour?

[Animus]

Hello everyone

My father has late stage dementia, with challenging behaviour. He can be calm for much of the day, but has periods of agitation and aggression which staff find hard to manage. As such, he was admitted to an in-patient mental health ward (as the community team couldn't help), where we hoped that the team would be able to adapt his medication & use behavioural approaches in order to stabilise him. I had a call from a Dr yesterday informing me that they would like to change his medication again, as he is still presenting similar behaviours as to when he was admitted to hospital.

My concern is that he has now been in hospital for ELEVEN MONTHS which seems such a long time!

I am happy that they understand his triggers, and I don't think too much more can be done with respect to working with those.

Is this unusual?
Has anyone else had a similar experience?
Other than speak to the Consultant, any suggestions for what I might do next?

I would like him to regain some quality of life and have some access to the outside world.

Thank you.

 

[RosiePop]

Hello Animus. I have some experience of this kind of issue. I have a friend with early onset Alzheimer's. Diagnosed at 50. Although a very introverted character prior to diagnosis, it was an aggressive outburst that resulted her moving into care in the first place.

Since then she has been admitted to hospital ( sectioned) three times. She is currently there. While she is in hospital they can stabilise her. This normally takes 3 to 4 months. Maybe a bit longer. Not 11 months though.

The difficulty is that when she is released back to the care home she seems to revert back to aggressive outbursts ( actually thumping fellow residents). Ultimately they can't cope and she gets sectioned again.

The Consultant has said she is a very extreme case. It is touch and go whether she will have to stay in permanent hospital type care this time.

We are torn because we want her to be settled in a place that best suits her needs. If she can't be reliably settled there is little point in going back to there care home. It is very disruptive.

I wish you all the best in finding the best place possible for your dad.

 

[Animus]

Hello Animus. I have some experience of this kind of issue. I have a friend with early onset Alzheimer's. Diagnosed at 50. Although a very introverted character prior to diagnosis, it was an aggressive outburst that resulted her moving into care in the first place.

Since then she has been admitted to hospital ( sectioned) three times. She is currently there. While she is in hospital they can stabilise her. This normally takes 3 to 4 months. Maybe a bit longer. Not 11 months though.

The difficulty is that when she is released back to the care home she seems to revert back to aggressive outbursts ( actually thumping fellow residents). Ultimately they can't cope and she gets sectioned again.

The Consultant has said she is a very extreme case. It is touch and go whether she will have to stay in permanent hospital type care this time.

We are torn because we want her to be settled in a place that best suits her needs. If she can't be reliably settled there is little point in going back to there care home. It is very disruptive.

I wish you all the best in finding the best place possible for your dad.

Thank you for your helpful reply. You have helped me see another perspective on this situation: although he has been in the ward for a year, it may have prevented him from having repeated admissions to hospital. Also, I can see that some people have a more aggressive form of the disease, which even with medication, can be very hard to stabilise.

I regret that the hospital did not provide information about similar cases when we entered the ward, and managed our expectations about likely length of stay.

 

[Jnightingale]

Jnightingale

My dad has just been in a care home for 4,weeks and we have now been told today that they cannot keep him due to his behaviour and he must leave on Monday (its Friday now).
He is occassionally aggresive. We are at a loss as to what to do next with such short notice. My mum cannot have him back at home and he needs professional care.

 

[Jacqueline McB]

Hi Animus, I'm sorry you're having this problem. My father is mid-stage Alzheimer's and his wife has only just asked for respite. I'm afraid we're no nearer to working out what to do than you are.
My father was rejected from 2 care homes because on his initial visit he asked if he would be allowed out by himself (several times). It was considered that he wasn't suitable and might be challenging. I was surprised as I thought they would have strategies for this behaviour. The third was a lovely home and he went in on Monday with the care home aware that he might ask to go out. On Wednesday he managed to leave (despite the keypad) and I was telephoned as asked to take him.
I have not heard from his care manager and am currently taking unpaid leave to have him at home with me (his wife still needs the respite).
Your experience of stabilising behaviour in a hospital might be where we're headed next. I wish you well and please keep us all informed how it goes.

 

[Animus]

Hi Animus, I'm sorry you're having this problem. My father is mid-stage Alzheimer's and his wife has only just asked for respite. I'm afraid we're no nearer to working out what to do than you are.
My father was rejected from 2 care homes because on his initial visit he asked if he would be allowed out by himself (several times). It was considered that he wasn't suitable and might be challenging. I was surprised as I thought they would have strategies for this behaviour. The third was a lovely home and he went in on Monday with the care home aware that he might ask to go out. On Wednesday he managed to leave (despite the keypad) and I was telephoned as asked to take him.
I have not heard from his care manager and am currently taking unpaid leave to have him at home with me (his wife still needs the respite).
Your experience of stabilising behaviour in a hospital might be where we're headed next. I wish you well and please keep us all informed how it goes.

It does seem to be that some dementia care homes only want passive and medicated residents, and they are not set up to help people with agitation and aggression - even though that is often a part of the illness!!

If your father does go to hospital, I would suggest that you find out who is responsible for the plan to move him out of hospital too - as 11 months on, I still don't know who that person is, and there is no clear care co-ordinator.

I wish you good luck.

 

[Jacqueline McB]

Hi Animus, I have spoken with social services today and it seems there is a difference in care between nursing homes and EMI units. My dad was in a nursing home where the elder care was for those that are physically infirm. My dad needs an EMI unit where the care is for mental infirmity and he will get 1 to 1 care to keep him occupied.
I wonder if this information helps you, I hope so. All the best.

 

[Loz2015]

Mum at home needs careers who can offer stimulus

Hello
Am looking for any recommendations for home carers in Brighton and Hove area, who are skilled in dementia and encouraging/escorting Mum out to the local shops or cafe for a coffee (active support and even positive behaviour support). She can display challenging behaviour, but this may partly be from lack of stimulus. The carers she has now are lovely people but their main focus is personal care which she rejects, preparing food and chatting to her. This is helpful to stop her feeling alone, but it's closing in her world. I'd like her to be happy for a change for as long as she can do this..
Any agencies you've used? I know these are not endorsements, just ideas!!
Thank you
Loz 2015

 

[RosiePop]

Dear Animus, just an update. Rather to our surprise E has in fact gone back to her care home and a week in all seems fine. I really didn't think this was possible but so far so good. The hospital stabilised her and now the care home seem very confident that they can cope. So far so good. How are things with you?

 

[Miss Flip]

Hi Animus,
My dad was sectioned in hospital for19 months as his behaviour was so challenging (he was finally diagnosed with Lewy bodies). His medication was constantly changed and reviewed and at times I wondered if he would ever leave. We were unable to find any homes willing to accept him as he was so aggressive but he is now settled in a home, off all medication and so much calmer. Although it is heartbreaking to have someone in a mental health ward for so long, my sister and I took comfort in knowing that he was getting the best care and had access to people who knew about his condition day and night. I really hope that your father gets sorted out soon - sometimes it just takes longer than you think and the hospital won't let him go until they are satisfied they have done all they can.
Hope that helps,
Miss Flip

Hello everyone

My father has late stage dementia, with challenging behaviour. He can be calm for much of the day, but has periods of agitation and aggression which staff find hard to manage. As such, he was admitted to an in-patient mental health ward (as the community team couldn't help), where we hoped that the team would be able to adapt his medication & use behavioural approaches in order to stabilise him. I had a call from a Dr yesterday informing me that they would like to change his medication again, as he is still presenting similar behaviours as to when he was admitted to hospital.

My concern is that he has now been in hospital for ELEVEN MONTHS which seems such a long time!

I am happy that they understand his triggers, and I don't think too much more can be done with respect to working with those.

Is this unusual?
Has anyone else had a similar experience?
Other than speak to the Consultant, any suggestions for what I might do next?

I would like him to regain some quality of life and have some access to the outside world.

Thank you.

 

[Stevey]

Hello Animus,

Gosh, the more and more I read these forums the more I realise how many people are in the same or similar situations. It's so very sad and hope you manage to make some positive progress going forward.

My mother was recently moved from a residential home - where was only supposed to be for a week for respite (long story) - to a nursing home who are more equipped to deal with her condition. She was and still can be aggressive and non-compliant with staff, particularly when needing to be washed or having a change of clothing. It's been very difficult for us to witness and to process, as she was always a caring and loving mother but dementia had robbed her of those things that made her who she is / was.

The nursing home recently mentioned 'sundowning', which is a term I had never heard of before, but describes pretty well how her mood changes in the late afternoon into the evening. She is often very distressed and hysterical, and wailing and crying, and as such very difficult to calm down and takes a lot of time to settle. Of course, it's very different to change he if she wets or soils herself. Over the last couple of months she's all but lost the ability to understand how to use the toilet herself.

The GP / mental health doctors have tried stabilising her through medication but no combination seems to have worked. We've given things a trial run to no avail, and this seems the major stumbling block. It's a terrible thing but I guess we're at the mercy of the experts and I feel I have to have confidence and trust in them to do what's best for mum.

Again, really hope your situation improves.

 

[Animus]

Hi Animus,
My dad was sectioned in hospital for19 months as his behaviour was so challenging (he was finally diagnosed with Lewy bodies). His medication was constantly changed and reviewed and at times I wondered if he would ever leave. We were unable to find any homes willing to accept him as he was so aggressive but he is now settled in a home, off all medication and so much calmer. Although it is heartbreaking to have someone in a mental health ward for so long, my sister and I took comfort in knowing that he was getting the best care and had access to people who knew about his condition day and night. I really hope that your father gets sorted out soon - sometimes it just takes longer than you think and the hospital won't let him go until they are satisfied they have done all they can.
Hope that helps,
Miss Flip

Thank you, Miss Flip. Gosh 19 months is such a long time, but yes, that's a good way of looking at it. It has been reassuring to know that he has had staff with him at all times whilst he has been in hospital (even though his 1-2-1 staff have widely varying levels of enthusiasm for the job!). When I look back at the time he spent living at home alone with the illness - when he was very confused/agitated and we couldn't get more help from social services - it makes me very sad indeed.

 

[Miss Flip]

It is very frustrating trying to get help from social services or indeed anyone. I do think if we had managed to find some support before, dad might not have deteriated so fast. However my sister (who was dads main carer as I live 350 miles away) used that time dad was in hospital to rest, have a holiday and generally make the most of not being rung in the middle of the night (by dad or neighbours) in preparation for him coming home. Sadly that didn't happen but as I say he is now settled in a lovely home - and it is all paid for due to him being sectioned - and that would make dad very happy!
I hope your dad gets sorted soon. It's such a horrible disease but at least we have people on this site to help us find our way.
Take care
Miss Flip

Thank you, Miss Flip. Gosh 19 months is such a long time, but yes, that's a good way of looking at it. It has been reassuring to know that he has had staff with him at all times whilst he has been in hospital (even though his 1-2-1 staff have widely varying levels of enthusiasm for the job!). When I look back at the time he spent living at home alone with the illness - when he was very confused/agitated and we couldn't get more help from social services - it makes me very sad indeed.

 

[Red66]

My Dad

Hi Animus,

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

 

[Animus]

Dear Animus, just an update. Rather to our surprise E has in fact gone back to her care home and a week in all seems fine. I really didn't think this was possible but so far so good. The hospital stabilised her and now the care home seem very confident that they can cope. So far so good. How are things with you?

Hello there

I'm pleased that things have improved, Rosiepop.

We have had some news today that Dad has finally been accepted into a dementia care home. I hope that he finds some peace and kindness there. We will be visiting him regularly.

Animus


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[Animus]

Hi Animus,

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

Dear Red,

This is heartbreaking. I'm so sorry for what is happening to your dad and your family. May I ask why he was sectioned?

My dad was sectioned as he was so aggressive and he was smashing up his flat in anger and confusion. We knew he needed assistance, but we didn't think it'd take 11 months. He too has lost a lot of his skills since being hospitalised, but of course, they say it is due to the progression of the illness.

I would strongly recommend asking for the ward's clinical psychologist to do a full review of your dad's behaviours, as we found this very helpful.

With best wishes

Animus





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[Red66]

Dear Red,

This is heartbreaking. I'm so sorry for what is happening to your dad and your family. May I ask why he was sectioned?

My dad was sectioned as he was so aggressive and he was smashing up his flat in anger and confusion. We knew he needed assistance, but we didn't think it'd take 11 months. He too has lost a lot of his skills since being hospitalised, but of course, they say it is due to the progression of the illness.

I would strongly recommend asking for the ward's clinical psychologist to do a full review of your dad's behaviours, as we found this very helpful.

With best wishes

Animus





Sent from my iPhone using Talking Point

Hi Animus,

My dad was sectionedin November as he kept wanting to go out on his own, on the bus. He walked out into the road and in front of buses. He wouldn't stay in and Mum had no choice but to let him go. He wasn't aggressive but would argue that nothing was wrong with him. Mum made a call and the consultant came the house, said he had to be sectioned. Went down hill from there.

Dreadful to witness your parents like this. So so sad.

Good place to support each other and listen to other stories and know you're are not alone.

Red

 

[Animus]

Gosh that is truly awful. Your poor dad. My dad is 65 now, and is at the advanced stage of the illness. His illness has felt like a quick progression, but your dad's sounds far quicker - which must be so difficult for you all. It's hard to think about what people with dementia go through when they hallucinate and are frightened. Cruel illness.


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[Red66]

Gosh that is truly awful. Your poor dad. My dad is 65 now, and is at the advanced stage of the illness. His illness has felt like a quick progression, but your dad's sounds far quicker - which must be so difficult for you all. It's hard to think about what people with dementia go through when they hallucinate and are frightened. Cruel illness.


Sent from my iPhone using Talking Point

The craziest thing of all is when people take drugs in order to hallucinate and have a 'fun' time. Wow, if only they knew.

Your poor Dad, that is so young too. I look back at Dad and he retired at 65 but we can pick things out so much earlier than that when it must have been starting slowly but surely.

Retirement is when you should be getting up to mischief not living in a psych unit to see just who will take you.

Rubbish.
Red.

 

[Rainbow100]

Hi, Animus

Hello there

I'm pleased that things have improved, Rosiepop.

We have had some news today that Dad has finally been accepted into a dementia care home. I hope that he finds some peace and kindness there. We will be visiting him regularly.

Animus


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Glad to hear your Dad has been accepted into a care home
I'm really struggling with the anger my Dad is displaying towards my Mum. Numerous things in the house have been smashed including furniture. He doesn't ever say anything nice to her all day long and is constantly blaming her for everything. I'm worried that my mam is going to snap. She is a very patient person but things are getting tough. At the moment she has no real help as he seems quite with it a lot of the time (just awful to her in private). For the first time he actually had huge anger issues tonight in front of my husband, myself, my 4 year old and 1 year old and it was awful I really want to help (we live very close and visit often) but I really don't want to expose my 4 year old to it as he is starting to question why 'Grandad' does these things Any help greatly appreciated X