Hi Everyone not sure what's going to happen next, any word's of wisdom greatly appreciated: My mum has advanced vascular dementia is bed-bound with double incontinence and totally reliant on others for all aspects of care, including person care. My Dad & I cared for her at home until 8 weeks ago when, after 2 years of struggling, it became too much for us and we had to put her into a care home. The home seem very nice and assured us that they had staff trained in dementia care and could look after mum untill she passed (she's on palliative care). Unfortunately mum has rapidly gone down hill cognitively speaking and is refusing all aspects of personal care. She has become aggressive towards the carers and will only eat when family are present. Most of the time her pad is only changed when I visit and she has nasty bruises on her arms and hands. I have approached the management and they say that they cannot do anything if she won't let them. I'm screaming inside and don't know what to do next.... I've tried to find out what's the matter but all mum says is 'it's my body, my choice"... She has a DOLS for 60 days and lacks capacity. Any advice, please???
Resistance to all personal care, at wit's end
- Thread starter Lovely Lass
- Start date
It's very difficult when someone still has the ability to state a personal choice, because staff/carers will have to be very careful not to push it I'm afraid, for their own safety too, in terms of possible allegations. My father is the same only without speech and becomes very aggressively resistant so they have to step back. What they do, is keep trying throughout the day and normally, can get him showered and sorted or at least washed. But the difference also being that he is in a dementia specific nursing home where staff are extremely well versed in dementia behaviours and are also working under s specialist EMI nursing team.
One thing they have found can work quite well, is to calmly explain, over and over, every step of the way, what they are going to do and why, and then to keep doing this through every part of the activity.
In a non specialist care home, there is likely also to be a lower ratio of carers to residents so they may not have the time to devote to such methods.
Regarding the bruising - yes, be wary - but also, my Dad bruises so easily now - even gripping his hand a little tight if he wobbles whilst walking can cause a bruise that looks dreadful!
If you are self funding, I suggest maybe considering a specialist dementia nursing home - in fact if your dear Mum is deemed end of life then she should be eligible for NHS Continuing Health Care (CHC) funding to cover the full costs of this.
Maybe look around a little, go and visit a couple - then if the current home are not coping with meeting your Mum's needs, they should be able to support an application for funding.
The helpline on here is a good start, they helped me to have the confidence to start asking the right questions and to know a little about the rules for funding etc.
Meanwhile, big hugs to you x
One thing they have found can work quite well, is to calmly explain, over and over, every step of the way, what they are going to do and why, and then to keep doing this through every part of the activity.
In a non specialist care home, there is likely also to be a lower ratio of carers to residents so they may not have the time to devote to such methods.
Regarding the bruising - yes, be wary - but also, my Dad bruises so easily now - even gripping his hand a little tight if he wobbles whilst walking can cause a bruise that looks dreadful!
If you are self funding, I suggest maybe considering a specialist dementia nursing home - in fact if your dear Mum is deemed end of life then she should be eligible for NHS Continuing Health Care (CHC) funding to cover the full costs of this.
Maybe look around a little, go and visit a couple - then if the current home are not coping with meeting your Mum's needs, they should be able to support an application for funding.
The helpline on here is a good start, they helped me to have the confidence to start asking the right questions and to know a little about the rules for funding etc.
Meanwhile, big hugs to you x
It sounds to me as though it is very early days and it can sometimes take a while for people with dementia to transfer their dependence from family to staff and accept their care. This is especially true if they have only ever known family doing things for them. The care home, though, aught to have strategies for dealing with this and persuading them to allow care. Have you spoken to the manager about your concerns and what strategies they have to deal with it?
Im not sure from your post, though, whether your dad is in a care home that accepts other people as well as people with dementia, or whether it is a dedicated dementia home. As @Sonya1 has said, there is a big difference between somewhere that has some staff trained in dementia care and somewhere where all the staff are extensively trained and have daily experience. It is, unfortunately, not uncommon for care homes to blithely say that they can look after people right to the end, when in reality they are often unable to do so because they cannot deal with various behaviours.
Im not sure from your post, though, whether your dad is in a care home that accepts other people as well as people with dementia, or whether it is a dedicated dementia home. As @Sonya1 has said, there is a big difference between somewhere that has some staff trained in dementia care and somewhere where all the staff are extensively trained and have daily experience. It is, unfortunately, not uncommon for care homes to blithely say that they can look after people right to the end, when in reality they are often unable to do so because they cannot deal with various behaviours.
This is really difficult. Your mum is on palliative care. She is under a DoLS due to lack of capacity. She is very frail. But... she can still state her wishes, i.e. 'My body, my choice.'
Obviously, a person cannot remain in wet/soiled pads for long due to skin integrity/infection risks. (Not to mention the issues of dignity, etc.) From what you say, it seems she will allow a pad change while you are there but you can't be there on every occasion. On the other hand, they can't hold her down!
This calls for skilled staff. They need to keep trying until they find an approach that works. I'd say you need to discuss this with management and ask what they're going to do about it. (Because it is their responsibility, not yours.) Ask what they usually do in such situations. (Because your mum won't be the first person to refuse care.) Ask if they have consulted the GP - there may be meds your mum could be given to make her feel less anxious/more relaxed. It could be that the staff are only trained to deal with 'easy/compliant' dementia residents and your mum's behaviour is beyond what they can cope with. In that case they should tell you and your mum could be moved into a more suitable home.
And it might also turn out that your mum will settle somewhat, get used to the care staff helping her with personal care and eating - it takes time for people to adjust. Patience and perseverance are really the only things that will work. (And maybe drugs.)
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