My mum has recently been diagnosed with PSP. She has moved into sheltered accommodation and lives with her husband. She has carers on site who through social services are coming in once in the morning. I rang social services a month ago as I was concerned that she wasn't washing. She has been assessed as needing help with her personal care. A month in and several conversations about consent the only people that seem to be washing her are the family and thats typically because she is smelling when we go there (1-2 x per week). The carers are going in every morning and she has been 'having chat ' with them. (30 mins day which she is paying for). We sat down again today with care manager and they have asked us to go in and help with the carer on Monday to get mum on board with having a wash. I have read about people with PSP suffering from apathy around things. Has anyone got any ideas that have worked for them surrounding balancing my mum's dignity/wishes and ensuring she is clean etc. It's not a dig at the carers as I do see from their side as they can't force her and her husband is flat out working and their relationship has dramatically changed really quickly from spouse to carer so he is on a steep learning curve. I was thinking about how to show them the link between the brain and apathy and the way this will affect her motivation to do things. Sorry it's long any ideas appreciated. X
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manda42
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Hi Manda, I think that you will just have to be very straight with your mum, to the point of being blunt. I have found with my mum that some times I have to think as if I was dealing with a toddler. Obviously it is difficult, with switching roles, but that's PSP for you. I try not to talk to her like that but there are definitely negotiations now more akin to those with a toddler. Just assure her of your love, but would rather she smelt nice and clean!
I don’t think this is necessarily a PSP thing as my husband was fastidious about being clean and had a shower every morning and was never apathetic, trying to show an interest in everything until physically impossible due to his inability to move. Once he became incontinent he wanted a shower every time he had “been”. My mother, however, when she showed first signs of Altzheimers refused to bath or shower. She was living at home with dad and it was me who had the battle as the bungalow started to smell and folk stopped going to see them. When carers eventually went in, she warmed to one who could get her to shower but the others couldn’t. The one who could, made it a game, as JA10 said, like dealing with a toddler. Although my husband had to have every physical need taken care of, mentally he was still an intelligent adult up until the end and hated it when others spoke down to him.
I hope going in with the carer helps and it isn’t too much of a battle.
Thank you so much for your reply I think you are right and everyone is so different. I am trying to look at it from a perspective of how she 's always been ie quite fastidious about cleanliness and that if her brain was okay she would definitely be showering every day. She seems to dislike the water sensation on her body especially her feet which she says feels like cellophane and can't wait to get her shoes back on. I think this is due to nerve pain/damage. Talking this out with people really helps though. Thank you.
Manda, perhaps if the feet are a sensitive area, you could try shower/pool shoes or crocs. Basically working within the boundaries of how she is feeling might bring solutions. You could do sponge bath on those toes and other areas as needed.
Thank you I will look at doing this. I am wondering if the shoes that you get to go on the sea might also help. Thanks for all the thinking outside the box so helpful in coming up with solutions.
Rather than apathy think of it as a reduced ability to initiate. It affects most areas of functioning with PSP/CBD.
It's a bit worrying that people are agreeing to do the bathing and then not doing so. Also that carers are going in and chatting when your Mum clearly needs to have her personal care addressed. Failing to address that issue is a serious failing in their duty of care. AKA = Neglect. Even if it is not their job to do the bathing they do have a duty to raise it as an issue with someone and to ensure something is done.
What is needed is a care plan. Social care is based on these. The care plan is written based on a formal assessment of her needs. The next stage is to work out who does what to meet those needs. based on the care plan. It sounds a little formal, but it ensures that those needs are met and if they are not then there are specific people who have failed in their duty and thus issues can be addressed.
I would suggest that you call Soc. Serv again and tell them that your mother is being neglected and is at risk (bad hygiene is a risk) and say that she urgently needs both a Needs Assessment and a Risk Assessment. This is the language they understand.They will automatically work those up into a Care Plan and they will also ensure that each need is being met by whatever service or agency. They will collaborate and discuss with you and your Mum at every stage.
There should be a care file in your Mum's home where the carers coming in write down what they have done on each visit as well as any concerns and what they have done to rectify those concerns.
For mobility issues (including any equipment which is loaned for free) you need an Occupational Therapist. Social Services will arrange that after their assessment or you could phone the GP and ask them to make a referral.
Thank you so much for your reply. So initially I contacted social services to say she wasn't washing. They assessed her and said she needed help. Help is on site but issues with staffing and care provider changed over that same month. On going discussions with care providers in the context of her just having moved and distress this caused and explaining condition and effects of psp. Spoke to GP as was worried about pressure areas and district nurses came out and assessed her. Parkinson's nurse and physio now also on board locally and social services provided rail in bathroom and door rail to improve access also has a new chair which has helped alot. I think the care providers are concerned as they called social services last week and said she wasn't washing/refusing (back to square one). The social worker ressesed her and now they have asked us to go in on Monday to help mum with her carer. It's a bit frustrating as we are almost waiting for them to play catch up all the time. I think because my mum looks okay they don't understand what the problem is. When I go on Monday I will mention what you have said and hope it helps. Thank you.
My husband suffered from severe apathy, to the point he didn't care who did what to him or where. So it doesn't sound like apathy to me. Like others have said, you are going to have to firm and very blunt with her. I am afraid this is PSP for you. You become the big ogre, fighting everyone, from your Mum, Dad, right up to all the professionals. I hated this so much, but like all the other symptoms you will suffer, it has to be done, for your Mum's well being. Go shopping, buy some good boxing gloves, this won't be the last battle you have fight, I am sorry to say.
I found that when nurses just went in expecting to do their job there was no problem. It is not giving any alternative. Chris was always keen to be clean and groomed so it was more about privacy. Nurses just get on with it. Perhaps that's the problem - if they see themselves as carers rather than nurses.
If your Mum doesn't like the sensation of showering would she accept an all over wash with a flannel? Mum doesn't feel upto a shower everyday but she does have a proper bodywash each morning. Maybe if you explain to your Mum that it's the carers job to keep her nice and clean and if she doesn't let them, they run the risk of being disciplined (have used this ruse on my Mum to get her to eat on occasion - you know, you must try Mum or Sam will get in trouble if she hasn't done what she's meant to). Another ploy could be for the carers not to ask (questions can be stressful and a struggle to answer) if she wants a shower but just to start chatting and take her into the bathroom and start washing her, just chatting away, so she is not so aware of the washing but more involved in the chat.
Hope you find a solution as must be distressing to see your Mum like this. xxx
Hello thanks for your message. This is a good idea. I called my mum yesterday to remind her that I am going tomorrow and she seems okay with the idea of me helping the carer. She did say she will do it "but on her terms" which I thought was brilliant. Thanks so much for all of your messages I feel so relieved hearing every one else's experiences it has helped enormously.
We have had similar issue with dad about water sensation and came up with the solution of sitting in the shower cubicle and using the low level hose rather than the overhead. He always wanted his hair washed and shower everyday even now it’s a two person carer job Nd a converted shower BUT it solved his sensation problem and made bathing easier again as the water could be controlled away from his head. Might same work for your mum ? We also keep a pair of boxers on him initially as he was very very private person. Once he was comfortable with the team and they got used to him he’s opened up so much more and let’s then wash him no problem
If you don’t have a low shower hose we discovered that most standard Uk shower heads unscrew and a long hose with handle can be screwed in instead
Thank you for your response thats a great idea re the hose and the boxers. I think my mum is quite a private person too and young people especially can forget this. I will try those things out and see if it makes a difference. Best wishes. Mandy xx
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