Advice Please

LolaJoan

New member
Mar 27, 2024
1
0
My Dad (75) was diagnosed with vascular dementia around 6 years ago, he was cared for by my Mum and his Sister, who all lived together. Sadly my Mum passed away in 2020, so my Auntie (79) took on full care of him. Due to his behaviour becoming unmanageable, we made the hard decision to find a care home for him which we did and he's been there since July 2023. My Dad's become very aggressive, both physically and verbally. The care home have made a request we arrange 6 x hours per day one to one care for him to see if this will help, alternatively they will have to give him notice to leave. The additional cost will be around £6k a month more than the current £4k in fees he's already self funding. Due to my Dad being unsteady on his feet and has had multiple falls, his Dr is reluctant to administer a mild sedative etc. Has anybody had a similar issue and been able to successfully manage the aggressive behaviour, or at least reduce it please?
 

Alberta23

Registered User
Oct 15, 2023
89
0
Hi LolaJoan. Goodness this is hard for you. And such high costs as well. Which must be a worry.
I would almost wonder if 24/7 care was an option if he went back home, where he was in familiar surroundings. It would be a fraction of the cost. Rather than paying double costs, care home & 1:1 care.
Often people get disorientated in care homes. They struggle with new people, different bed, different food, lack of freedom etc. we forget it is huge for them. Many Men, obviously not all, instinctively fight back if they are unsettled. Women mainly go into themselves. I use to work with children with behavioural difficulties. Boys were more physical if stressed. Girls would go quiet. Appear fine.
So the main area of intervention was to find out what created the stress and change the approach, change the environment, give skills and strategies to help them cope.
Its easy to think sedating someone would help. Sadly that is a quick fix that can be extremely damaging to the person, as it just blocks/hides the problem. So i would never recommend sedating someone who needs better support.
It would be worth spending a day with him to see what upsets him. Staff, noises, smells, food, not watching his favourite TV, not going out etc.
Then work from there.
Are staff too busy and so he never gets to speak to anyone. Find times they can get to know him. Find a resident who may like to chat to him.
Is the food not familiar. Take in some of his old familiar food that gives him comfort.
Is it too noisy. See if there is a quieter area, or would he use ear defenders.
Does he get confused? Would he benefit from a schedule that shows him clearly what is happening and when.
Are there clocks for him to see the time? Give him a watch, or place a clock so he can see it.
We forget everything is new. For such elderly people it is really scary to be somewhere different. Having any element of Dementia, even more scary.
But i do wonder if 24/7 care was cheaper at his own home, and could be more settling for him, if you found the right care agency. If he can afford 6k month, it gives you a huge option of choices.
Otherwise, check out if the care staff are trained enough in calming agitated adults. Often they can, without meaning to , create problems as they are simply needing to do jobs. So they miss causes of stress. Dont realise how hard change is for elderly residents. Some elderly people love being in a care home. Love the company. Others seriously struggle.
Relaxation sessions and massage are other areas to consider. Stress balls, calming music, weighted blankets can all help reduce stress. Plus a familiar chair. Familiar photos.
Just giving you a starting point. Others on the forum will equally have loads of ideas. Its finding what works for your dad. We are all different.
 

Collywobbles

Registered User
Feb 27, 2018
296
0
Clearly he can’t come home in his condition. It wouldn’t be safe for anyone. This might be the point at which you need to dig your heels in and start drawing lines in the sand.

Tell the care home that there won’t be any extra care funded by you. Also tell them that you will not have him at home with you if they give him notice to quit. Place the ball firmly in their court and see what their next move is. It sounds harsh, but sometimes brinkmanship is needed to force positive change. I’m pretty sure they wouldn’t just drop him on your doorstep and run away. I’m very sympathetic to their situation, but your father’s behaviour is a logical progression of dementia for some folks, so they must have a protocol for dealing with it - even if that involves passing him to a different sector of the care system.
 

Banjomansmate

Registered User
Jan 13, 2019
5,544
0
Dorset
Who assessed him for this Care home? Did you have a proper best interest meeting with Social Services? If the current home is no longer right for him then it sounds as though a new assessment is needed. You should certainly not be expected to pay for 1-1 care, I’m sure.
 

ljwatson71

New member
Feb 22, 2024
4
0
Your situation sounds very similar to what we have been going through with my Unlce. He is self funding but the LA sectioned him to a secure unit for 28 days. He went into one care home after a report was sent (the care home said they could meet his needs) after requesting one 2 one they decided they couldn't. Cut a long story short he ended up back at the unit and a new care home was found. Again they said they could cope after 1 month they requested one 2 one for 12 hours £2900 a week. He escaped twice and was returned by the police, the home then requested 24 hour 0ne 2 one. Home asking self funders for one 2 one care is common.

With the help of a adult social worker we submitted a Continuous healthcare assessment request, they did a full assessment and have now agreed funding for him. Do get in contact with adult services to request support with this.

Also check with the care home that a mental health assessment has been done by the local CMHT (community mental health team) they should have a service in your area specifically for people over 65. There could be other support services that could attend the care home and support him.

Our current situation is our uncle is now in hospital but the care home do not want him back, so the cycle starts all over again. Frustrating as there seems to be a lack of placement for people with aggressive dementia

Good Luck
 

Alberta23

Registered User
Oct 15, 2023
89
0
So sorry Ljwatson71 to hear of all your equal difficulties with your Uncle.

Behavioural difficulties are created for loads of different reasons. Ive worked with emotional stress, medical stress, stress related to disabilities and learning needs, genetics, brain damage etc. Most of the spectrum of behaviours. Equally ive worked with young adults, families, and adults in lots of different settings.

Across all areas of behaviour there was a common theme i.e. People were trying to communicate their needs with us. So although there may be a trigger e.g. dementia, it's important to try and find what stresses the person is experiencing. Dementia triggers behaviour for lots of reasons. Sadly we clump behaviours altogether, and stop 'listening'. Staff are often not trained in listening to what behaviours are telling us. So they panic and say they can't cope.

My mum struggled after her arm got injured after a fall . Staff complained about her behaviour. Yet she was in a huge amount of pain. They complained about her being verbally aggressive towards them. Yet failed to empathise with her pain, her confusion, her needs. Her fear.

I ended up staying overnight and witnessed things that highlighted lots of concerns around forced routines, inappropriate meals, staff refusal around toileting mum, poor handling, negative attitudes, staff inappropriate comments to residents. All creating huge stress for mum.

Sadly my mum died within 8 weeks of going to the home. She did not have enough strength to cope.

So not understanding behaviour has huge implications for a person who struggles to communicate their needs by normal verbal means.

Its important to debate options around having 24/7 home care support. The agency I was trying to get to help mum get back home, stated that often, the behaviours exhibited in a care home, significantly decreased once a person went back home.

Obviously many people are not in a situation to financially support that option, but many people are, so its worth a consideration. Even if that option is not taken.

My mum would have been far more settled in her home. Would not have had the injuries she sustained, and could have had a familiar person with her everyday. Sadly we ran out of time. But i take comfort that i was with her at the end and able to hold her in my arms and give her comfort until she died.

But i do feel behaviour is not supported properly. Not understood within areas of communicating needs. Its seen as something to fear. Which is the wrong approach.

I worked in a Homeless Centre where violence was common. The first thing I did, was sit the person down, smile, talk calmly. Ask them what was upsetting them. I didnt do anything else until they had calmed down. I just sat with them.

People with dementia struggle with finding the right words, or even understanding themselves why they hit out. So staff have to be their voice. Otherwise they make it worse.
 

SherwoodSue

Registered User
Jun 18, 2022
626
0
Alberta23. Of course you are right. Optimum quality care produces best results but sadly the reality is in this country elder care/ dementia care is low status. It is poorly paid. Staff are poorly trained and qualified. Staff turnover is high.
I know this wouldn’t be your intention for one minute but I wonder if your post would cause distress to some families?
I have seen post here from (often) wives struggling with increasingly bullying behaviour from their partner non stop verbal abuse becoming physical. Women retreating to their cars for personal safety and needing to keep a phone fully charged and on their person at all times so they can call for help.
Eventually they hit carer burnout and there is an admission. PWD is now cared for by a team of people on a shift pattern with some training and support contrasting to a person alone and unsupported providing care in their own home. Yet the home can’t cope - how much less the poor individual carer at home!
The idea that all will be well if the person was returned home all would be well seems wishful thinking.
The PWD May have some funds to secure live in carers around the clock (rare) but we do need to note that there are two people here worthy of our compassion. The PWD and the carer. BOTH need to be kept safe.
 

Alberta23

Registered User
Oct 15, 2023
89
0
Points taken.
Just to clarify, I would never suggest a person being on their own without support if they were feeling threatened in any way. Noone would suggest that.
Many of us have been in those situations, myself included, and its awful to feel that scared. Believe me, I know how that feels. I am very aware of how frightening situations can get for us.
My thoughts were only considerations, as the situation was already serious.
I was wondering, if having full time carers at home ( if that had to happen), would it reduce conflict and behaviours? Would the PWD be more settled? For some people, there have been very positive outcomes. People can only assess their own situation. I feel the forum provides different viewpoints, and everyone of those are valid. One may work. Others won't.
It's important to look at all options. Sometimes ones we think will fail, are the ones that make a difference.
I thought it was important to share thoughts for the care home setting as well. With mum I had to really look hard to see what was stressing her. It was a mixture of a lot of things all piling up on her. Sadly mum was too old to cope. But I know for her, being back at home would have helped her more. Everyone is different.

My thoughts were never to create distress. They are simply ideas in the hope one is helpful.
 

SherwoodSue

Registered User
Jun 18, 2022
626
0
I didn’t think for one minute you wished to cause distress. 100% I agree that insight into triggers such as pain or discomfort which cause PWD to lash out should be tackled first and that an individualised care plan which meets all the needs of the individual person is the way to go.
How heartbreaking that NHS/social care structures at the present seem to be rarely able to provide this.
Continuing to work hard in keeping my own mum in her own home but if ever I couldn’t maintain her safety there I hope I would be able to be kind to myself
The guilt monster seems to stalk so many of us.
 

Alberta23

Registered User
Oct 15, 2023
89
0
Thanks for that Sherwoodsue.

Yes, change needs to happen. Families need far more support and funding made available to them, to help their relatives remain with families as much as possible, but to ensure those families never experience burnout/fear/isolation .

Staff need to be highly and professionally trained. If a person needs to go into a care home they need to know they will be safely and professionally cared for. Poor practice needs stamping on.

Individual care plans need to happen and need to be tailored and bespoke, with family and the elderly person, very much at its core. An equal voice. It's not impossible.

Dementia/Alzheimer's is a serious, life changing condition. People suffering from it are struggling more than we will ever know. But we would not expect a person with heart failure to be treated by unqualified staff.

I am behind the campaign to fight for change.

My mums life was shortened. Through poor treatment. She lived in fear everyday, but was not allowed to move. I was aggressively told I was not allowed to move her.

I'd got her house ready to take her back home, regardless of what social services/care home managers were threatening. Her social worker and care manager created constant barriers. But I got an outside care agency to assess her. Mum told them she wanted to go home. She was still able to say how she felt. She was not in the far stages of Dementia. She always recognised me.

Sadly she died within the week. She was only there for 8 weeks. She had no strength left to hold on until I got her home. She was severely Malnourished. Food was not tailored to her needs. It breaks my heart.

Everyone deserves better. Barriers should never be created. Elderly people and their families need choices and an equal voice. Safeguarding concerns need to be actively and rigourously addressed. I knew what mum needed. Mum knew what she needed. We were both ignored.

Hospices have a model that works. That has compassion, professionalism, and understanding at its core. Ive never heard one person being concerned about care at a Hospice.

That care model has already been created, assessed, researched and implemented. Our relatives should have that level of care, either at home or in a care home, or hospital, from the onset of needing care. Not simply at the end. It can be achieved.

My heart goes out to everyone. Everyday.
 

Seabream

Registered User
Mar 28, 2024
11
0
I have no advice for you, Lola Joan but just wanted to say that I send you every good wish. I'm truly sorry that you are facing this x
 

SherwoodSue

Registered User
Jun 18, 2022
626
0
Thanks for that Sherwoodsue.

Yes, change needs to happen. Families need far more support and funding made available to them, to help their relatives remain with families as much as possible, but to ensure those families never experience burnout/fear/isolation .

Staff need to be highly and professionally trained. If a person needs to go into a care home they need to know they will be safely and professionally cared for. Poor practice needs stamping on.

Individual care plans need to happen and need to be tailored and bespoke, with family and the elderly person, very much at its core. An equal voice. It's not impossible.

Dementia/Alzheimer's is a serious, life changing condition. People suffering from it are struggling more than we will ever know. But we would not expect a person with heart failure to be treated by unqualified staff.

I am behind the campaign to fight for change.

My mums life was shortened. Through poor treatment. She lived in fear everyday, but was not allowed to move. I was aggressively told I was not allowed to move her.

I'd got her house ready to take her back home, regardless of what social services/care home managers were threatening. Her social worker and care manager created constant barriers. But I got an outside care agency to assess her. Mum told them she wanted to go home. She was still able to say how she felt. She was not in the far stages of Dementia. She always recognised me.

Sadly she died within the week. She was only there for 8 weeks. She had no strength left to hold on until I got her home. She was severely Malnourished. Food was not tailored to her needs. It breaks my heart.

Everyone deserves better. Barriers should never be created. Elderly people and their families need choices and an equal voice. Safeguarding concerns need to be actively and rigourously addressed. I knew what mum needed. Mum knew what she needed. We were both ignored.

Hospices have a model that works. That has compassion, professionalism, and understanding at its core. Ive never heard one person being concerned about care at a Hospice.

That care model has already been created, assessed, researched and implemented. Our relatives should have that level of care, either at home or in a care home, or hospital, from the onset of needing care. Not simply at the end. It can be achieved.

My heart goes out to everyone. Everyday.
What a rotten experience. I am so sorry xxx