• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

Hygiene - help!

Sammyr

New member
Jul 25, 2020
1
I’m a primary carer for my mother who has been diagnosed with logopenic PPA. While I understand this is a “rarer” form of dementia that primarily attacks the language centre of the brain and my mother undoubtedly presents with this as an issue, I’m not sure I really understand the difference between this and any other dementia as she also presents with all other memory and functionality issues.

We are at the stage where although she’ll happy chat (mostly nonsense) with people and wants to be social, she has no idea that I’m her daughter (I’m her friend) and is unable to really do anything for herself. She is absolutely refusing to wash, brush teeth, have her hair washed etc, and clearly demonstrates a fear of this.

When I’ve searched for help and ideas of how to tackle the hygiene issue, the most common response is you can’t and you just have to lower your own expectations and standards. While I can understand this to some degree, I absolutely cannot compute the fact I’m meant to just let my mother develop various infections (two UTIs so far).

When I attempt to encourage her to wash and try to do anything for her, she will change the subject, try to distract from it and will eventually become aggressive.

I don’t really see how external carers could make any further progress either. She has no respect now for medical staff or help and will equally become abusive and aggressive to doctors and nurses.

Can anyone please suggest anything, any methods or even give me some kind of hope that even if it means a further degeneration in her condition, that at some point she will become more amenable.

Thank you.
 

CLEMENTINA

Registered User
Jun 14, 2014
19
Dear Sammyr

I think you are amazing for taking on the problems the way you are doing.
My husband died peacefully in his sleep just over a month ago after 7 years of Alzheimers, which was undoubtedly the best way he could have chosen. So for that reason our experience is probably different than yours with your mother.

My husband did have struggles with language; that and confusion over motorway and roundabout driving skills were what alerted me over a 6 month period. He went onto medication: aricept Aka donepezil, and that actually increased his language ability. He remained on it throughout. I was told in an Alzheimers CRISP course for carers in the last few months that he could have been on another medication called mementil which had been cleared to use alongside donepezil at least 18 months previous. It had made a real difference to the mother of another course member. Don't expect your gp to volunteer any such information.

I hesitated to bring in carers. Someone said "why not give it a try?". I quickly found that with a few exceptions he was more tolerant of their efforts than mine. In the end he became used to wearing adult nappies and being showered or swabbed down by others. I think there is something about the dynamics of a close relationship that makes it more difficult deep down for a sufferer to allow that kind of help from their "nearest and dearest"

About adult nappies. Depending on your gp and district nursing team you have to fight for this. After being initially fobbed off with an unmanageable arrangement of net knickers and free floating pads (which got removed and concealed every which where,) I was told by them to go and buy pull ups from the supermarket or on line. Again on the same CRISP course I was told that I should have kept trying at the district nursing team as things deteriorated. I could have been on the far more suitable adult nappies they supplied free years before, instead of the last 5 months.

About medication compliance ask gp for suspensions instead of tablets if tablets are a problem, being spat out or hidden in the cheek. But beware of 2 things. 1 You need power of attorney over health and welfare and it needs to go through the doctor if not given by the partner/relative BEFORE the onset of dementia, and it is a legal process. Without this you can be investigated, as I was for depriving him of his " liberty to choose to refuse medication and to choose to have open access to walking off any old where regardless of danger to himself and others". I found it astonishing that I was reported to social services for grinding donepezil and antibiotics into a spoonful of honey. But all I had needed to do was go through the gp to get permission for all medication in suspension form (then remind them Every Time any medication is prescribed!) 2. The same pitfall applies if you are locking a door or putting a tracker on someone to prevent them harming themselves or others. They are unlikely to have been capable mentally of giving consent for this. Even though it is obvious to everone else that it's in the sufferer's best interest you have to go through the gp and a sort of legal procedure to comply with this "DOLS" procedure. . It will save a lot of heartache and actually your being disempowered in the end.

Ask Alzheimers Society for help and guidance with this and indeed everything. I wish I'd asked more often. It's all there. You don't always know what questions to ask or who to ask. But just keep asking. Things move on and change all the time both with your mum's condition and the procedures involved. I can only say the more I asked the better I could cope. Good luck and keep in touch. Clementina.
 

May30

Registered User
Feb 25, 2017
48
I didn't think my dad would respond to carers to help him with personal care but he did. They had a different way of approaching it, were more patient than we were and had different strategies that they could try. I think deep down dad didn't really want his family to help him with personal care, he was always very proud. We had the same carer every morning for over a year who helped him to wash and dress without issue. The help started after a social services assessment. We found that it really helped having the same person as, even when he started to forget who people were, he always seemed to know that she was familiar and that made him feel safe and more comfortable. It was only when his dementia progressed and he required evening care as well that it became difficult as he was more confused and difficult in the evening and we couldn't find a consistent carer who he responded well to.
 

hooperswan

Registered User
Dec 22, 2016
46
I’m a primary carer for my mother who has been diagnosed with logopenic PPA. While I understand this is a “rarer” form of dementia that primarily attacks the language centre of the brain and my mother undoubtedly presents with this as an issue, I’m not sure I really understand the difference between this and any other dementia as she also presents with all other memory and functionality issues.

We are at the stage where although she’ll happy chat (mostly nonsense) with people and wants to be social, she has no idea that I’m her daughter (I’m her friend) and is unable to really do anything for herself. She is absolutely refusing to wash, brush teeth, have her hair washed etc, and clearly demonstrates a fear of this.

When I’ve searched for help and ideas of how to tackle the hygiene issue, the most common response is you can’t and you just have to lower your own expectations and standards. While I can understand this to some degree, I absolutely cannot compute the fact I’m meant to just let my mother develop various infections (two UTIs so far).

When I attempt to encourage her to wash and try to do anything for her, she will change the subject, try to distract from it and will eventually become aggressive.

I don’t really see how external carers could make any further progress either. She has no respect now for medical staff or help and will equally become abusive and aggressive to doctors and nurses.

Can anyone please suggest anything, any methods or even give me some kind of hope that even if it means a further degeneration in her condition, that at some point she will become more amenable.

Thank you.
Hi carers will have experience of how to approach things,people with dementia like my mum can become scared of water,I use a no rinse but wet shampoo called Nilaqua it's available online,boots have it on their website too.After rubbing it in you just need to towel dry,before I apply it I have a water spray bottle with warm water in and spray it on a fine mist to dampen the hair a little,it works very well
 

anxious annie

Registered User
Jan 2, 2019
441
Hi Sammyr
Problems with hygiene can be a real difficulty.
When mum was at home she would insist she had showered , tho she obviously hadn't. She wasn't afraid of water tho, so would shower when I stayed with her. She never did accept carers helping with this, but as soon as she moved into care she happily let anyone bath or shower her.
It's probably worth giving carers a try, because some will accept this personal care more easily from "strangers".
I have heard others mention Nilaqua really helping.
Also, washing with a warm cloth, in stages ie, keeping bottom half of clothes on whilst washing under arms etc, then keeping top half clothed whilst talking down below.
 

DILhelp

Registered User
Jan 31, 2016
118
London
I’m a primary carer for my mother who has been diagnosed with logopenic PPA. While I understand this is a “rarer” form of dementia that primarily attacks the language centre of the brain and my mother undoubtedly presents with this as an issue, I’m not sure I really understand the difference between this and any other dementia as she also presents with all other memory and functionality issues.

We are at the stage where although she’ll happy chat (mostly nonsense) with people and wants to be social, she has no idea that I’m her daughter (I’m her friend) and is unable to really do anything for herself. She is absolutely refusing to wash, brush teeth, have her hair washed etc, and clearly demonstrates a fear of this.

When I’ve searched for help and ideas of how to tackle the hygiene issue, the most common response is you can’t and you just have to lower your own expectations and standards. While I can understand this to some degree, I absolutely cannot compute the fact I’m meant to just let my mother develop various infections (two UTIs so far).

When I attempt to encourage her to wash and try to do anything for her, she will change the subject, try to distract from it and will eventually become aggressive.

I don’t really see how external carers could make any further progress either. She has no respect now for medical staff or help and will equally become abusive and aggressive to doctors and nurses.

Can anyone please suggest anything, any methods or even give me some kind of hope that even if it means a further degeneration in her condition, that at some point she will become more amenable.

Thank you.
Aw we have been in this stage. We gave up trying to get my MIL into the bathroom. We now just get a bowl of water and a washcloth and rub her down even though she hates it.
MIL also lost sense of language it's all gibberish but the shouting and screaming really gets me down. She has no idea who we are and like you said medical staff are no different she cannot differentiate who they are.
We try to keep her hydrated and she has suffered from UTIs. She is double incontinence so it's a real struggle.
I pray alot and I am under alot of stress I wish things could get easier...but its really difficult juggling with lockdown a paid job and the caring aspect. I keep thinking I will lose my paid job. We have to spoon feed her as well.
Hard life
 

hooperswan

Registered User
Dec 22, 2016
46
Aw we have been in this stage. We gave up trying to get my MIL into the bathroom. We now just get a bowl of water and a washcloth and rub her down even though she hates it.
MIL also lost sense of language it's all gibberish but the shouting and screaming really gets me down. She has no idea who we are and like you said medical staff are no different she cannot differentiate who they are.
We try to keep her hydrated and she has suffered from UTIs. She is double incontinence so it's a real struggle.
I pray alot and I am under alot of stress I wish things could get easier...but its really difficult juggling with lockdown a paid job and the caring aspect. I keep thinking I will lose my paid job. We have to spoon feed her as well.
Hard life
It's horrible isn't it,I have to feed my mum too as she can no longer hold cutlery,it must be hard for you working too.It's very isolating and with everyone now wearing a mask I can't even see a smiling face to cheer me up.
 

DILhelp

Registered User
Jan 31, 2016
118
London
It's horrible isn't it,I have to feed my mum too as she can no longer hold cutlery,it must be hard for you working too.It's very isolating and with everyone now wearing a mask I can't even see a smiling face to cheer me up.
Aw . It is so hard I cry most evenings. My mum bless her gives me alot of advice as to how to deal with my MIL. my mum herself went through caring for my grandmother when I was only 3 years old.
 

Buffalo

Registered User
May 24, 2020
11
DILHelp - sat here with my mum experiencing the same.

Good bless you.

It's a constant game of lying, false promises and misdirection.
 

Greyling

New member
Jul 25, 2020
8
Aw we have been in this stage. We gave up trying to get my MIL into the bathroom. We now just get a bowl of water and a washcloth and rub her down even though she hates it.
MIL also lost sense of language it's all gibberish but the shouting and screaming really gets me down. She has no idea who we are and like you said medical staff are no different she cannot differentiate who they are.
We try to keep her hydrated and she has suffered from UTIs. She is double incontinence so it's a real struggle.
I pray alot and I am under alot of stress I wish things could get easier...but its really difficult juggling with lockdown a paid job and the caring aspect. I keep thinking I will lose my paid job. We have to spoon feed her as well.
Hard life
I would suggest that you putting her in a care home.

I am the full-time, unpaid, untrained carer of my ex-partner, who is nearly 72 years old, and who has Alzheimer's Disease, now in the "moderately severe" phase. (I am 67 years old, 68 in early November, and I have painful arthritis in my right hand. I had TWO total knee replacement surgeries last year: late February and late November.) We still live in the same house, as neither of us can afford to live on our own. Each of us paid 50% of the purchase price of our house 12 years ago. We have always had separate finances and never a joint bank account.

Barry often forgets to wipe his anus after defecating, so his underpants are smeared with fecal matter. I am forced to soak these in a bucket, then rub and rinse these by hand, wearing rubber gloves, prior to placing them in the washing machine. He sometimes wets himself when we go out locally, so after having soaked and laundered urine soaked jeans and underpants a few times, I stopped taking him with me out, and I now lock him in the house whenever I must go out for whatever reason. He cannot be trusted with any keys as he lost 2 complete sets of house keys as well as a separate key to the rear porch. The stroppy Adult Social Care female who rang me nearly 6 weeks ago, just told me to "Buy some pads" They do them for men too! You must have seen them advertised on tv." I am decidedly NOT doing that. The next stage will be adult nappies! I have NEVER changed a nappy in my entire life! I absolutely REFUSE to change nappies on an adult man, washing his anus and genitals.

When I was in hospital in February 2019 for my first total knee replacement surgery, Barry wandered off out, caught a train to London, got off at Hayward's Heath, and somehow managed to find his way back home to Willingdon, East Sussex, having lost his keys somewhere. He arrived home at ca 11.10 pm, to find the police in the house. They had broken the lock to the rear porch door to enter the house, after failing to find Barry anywhere. I rang the police at ca 10 pm, from the hospital, to report him missing, after Barry had not answered the telephone all afternoon or evening, up to that point. After that I decided not to let him have any more keys.

Barry has no family - that is, no children, grandchildren, nieces or nephews; only a younger brother of 67, a bachelor, living in Barnet, north London, with whom he fell out quite dramatically in early April 2010. We are not local people and know no one living locally. Barry had a few friends in Eastbourne at one point, but one moved to London, one to northwest Somerset, one couple moved to northwest Devon, and one moved to Cuba. The neighbours are no help; the semi on one side is lived in by an 80-year-old widow, who is perpetually wingeing about something or other (she wants me to replace this fence or that fence, keep the back garden neat and tidy, stop my cats from entering her garden and so on). She is narcissistic, self-absorbed and manipulative, often asking me to help her with various gardening tasks. The party wall neighbours are vile people. They and their 3 children are overpoweringly noisy, and we have not been on speaking terms with them for nearly four years now. I have no family; they are all dead, and in any case none of them ever lived in this country. I have never had children as not child orientated. The few friends I have left are scattered all over England; the closest ones live in Brighton-Hove. Thus, NO help whatsoever to be had. I am on my own with this.

I have NO social life, of course. Barry has ruined my life, and yes, I do feel very, very resentful about this, especially as he abruptly told me years ago, when I was living through a period of fairly deep depression "I can't look after you if you have a breakdown!" (Both a threat and a warning.) He also told me many times when we had an argument "I should have known better than to try to live with someone who has OCD!" Totally lacking in empathy.

NOW, I am forced to look after HIM, as well as put up with HIS Obsessive-Compulsive behaviour, running around all over the house looking for things he has mislaid, hidden or thrown away. My OCD was something I struggled with, but HIS is impacting quite considerably on MY life as I have to waste time looking for things he has misplaced, or hidden - or thrown away.

To conclude: I would suggest that you put your MIL in a care home.
 
Last edited by a moderator:

DILhelp

Registered User
Jan 31, 2016
118
London
DILHelp - sat here with my mum experiencing the same.

Good bless you.

It's a constant game of lying, false promises and misdirection.
God bless us all. Here on a sunday evening and I'm feeling so sick. There has to be more to life. My joints are extra painful today. Trying to stay positive. Whenever hubby is talking to me MIL is staring at me probably thinking who am I? She doesn't like it when we talk ie when me and hubby talk to each other... trying to keep it together x
 

DILhelp

Registered User
Jan 31, 2016
118
London
Sadly
I would suggest that you putting her in a care home.

I am the full-time, unpaid, untrained carer of my ex-partner, who is nearly 72 years old, and who has Alzheimer's Disease, now in the "moderately severe" phase. (I am 67 years old, 68 in early November, and I have painful arthritis in my right hand. I had TWO total knee replacement surgeries last year: late February and late November.) We still live in the same house, as neither of us can afford to live on our own. Each of us paid 50% of the purchase price of our house 12 years ago. We have always had separate finances and never a joint bank account.

Barry often forgets to wipe his anus after defecating, so his underpants are smeared with fecal matter. I am forced to soak these in a bucket, then rub and rinse these by hand, wearing rubber gloves, prior to placing them in the washing machine. He sometimes wets himself when we go out locally, so after having soaked and laundered urine soaked jeans and underpants a few times, I stopped taking him with me out, and I now lock him in the house whenever I must go out for whatever reason. He cannot be trusted with any keys as he lost 2 complete sets of house keys as well as a separate key to the rear porch. The stroppy Adult Social Care female who rang me nearly 6 weeks ago, just told me to "Buy some pads" They do them for men too! You must have seen them advertised on tv." I am decidedly NOT doing that. The next stage will be adult nappies! I have NEVER changed a nappy in my entire life! I absolutely REFUSE to change nappies on an adult man, washing his anus and genitals.

When I was in hospital in February 2019 for my first total knee replacement surgery, Barry wandered off out, caught a train to London, got off at Hayward's Heath, and somehow managed to find his way back home to Willingdon, East Sussex, having lost his keys somewhere. He arrived home at ca 11.10 pm, to find the police in the house. They had broken the lock to the rear porch door to enter the house, after failing to find Barry anywhere. I rang the police at ca 10 pm, from the hospital, to report him missing, after Barry had not answered the telephone all afternoon or evening, up to that point. After that I decided not to let him have any more keys.

Barry has no family - that is, no children, grandchildren, nieces or nephews; only a younger brother of 67, a bachelor, living in Barnet, north London, with whom he fell out quite dramatically in early April 2010. We are not local people and know no one living locally. Barry had a few friends in Eastbourne at one point, but one moved to London, one to northwest Somerset, one couple moved to northwest Devon, and one moved to Cuba. The neighbours are no help; the semi on one side is lived in by an 80-year-old widow, who is perpetually wingeing about something or other (she wants me to replace this fence or that fence, keep the back garden neat and tidy, stop my cats from entering her garden and so on). She is narcissistic, self-absorbed and manipulative, often asking me to help her with various gardening tasks. The party wall neighbours are vile people. They and their 3 children are overpoweringly noisy, and we have not been on speaking terms with them for nearly four years now. I have no family; they are all dead, and in any case none of them ever lived in this country. I have never had children as not child orientated. The few friends I have left are scattered all over England; the closest ones live in Brighton-Hove. Thus, NO help whatsoever to be had. I am on my own with this.

I have NO social life, of course. Barry has ruined my life, and yes, I do feel very, very resentful about this, especially as he abruptly told me years ago, when I was living through a period of fairly deep depression "I can't look after you if you have a breakdown!" (Both a threat and a warning.) He also told me many times when we had an argument "I should have known better than to try to live with someone who has OCD!" Totally lacking in empathy.

NOW, I am forced to look after HIM, as well as put up with HIS Obsessive-Compulsive behaviour, running around all over the house looking for things he has mislaid, hidden or thrown away. My OCD was something I struggled with, but HIS is impacting quite considerably on MY life as I have to waste time looking for things he has misplaced, or hidden - or thrown away.

To conclude: I would suggest that you put your MIL in a care home.
Unfortunately this is not my decision. In this pandemic she will probably last 5 minutes. I feel this is my fate. Thankfully I have gp therapist lined up next month. To cope with this dreadful situation.
 

canary

Registered User
Feb 25, 2014
13,434
South coast
In this pandemic she will probably last 5 minutes.
She may not do. When my mum moved into a care home she was deteriorating so rapidly that I feared that she would only last a few months. Amazingly, once she settled she thrived and lived for a further 3 years. She was much happier there than she was at home. My experience is not unique, either - there have been many people posting on these boards saying the same. So dont automatically dismiss the idea out of hand.
 

DILhelp

Registered User
Jan 31, 2016
118
London
She may not do. When my mum moved into a care home she was deteriorating so rapidly that I feared that she would only last a few months. Amazingly, once she settled she thrived and lived for a further 3 years. She was much happier there than she was at home. My experience is not unique, either - there have been many people posting on these boards saying the same. So dont automatically dismiss the idea out of hand.
We noticed a major difference once our full time carer left due to lockdown. MIL was more responsive. My hubby will need to make that decision regarding homecare atm his job is very slow so he may well become the fulltime carer. This pandemic climate is so scary