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What to do when MIL refuses to let carers attend to her?

Ton3

Registered User
Dec 2, 2019
23
0
Hi,
MIL has had carers in 4 times a day since Dec 2020 (my wife has lived in and cared for her mum since end of Aug 2020) I have posted before about steroids and the change for the better they made in MIL's demeanor and sadly the consultant is reducing steroids and with this the old uncooperative behaviour is creeping back in.
I wondered how others dealt with the person they are caring for refusing to let Carers change them and deal with their hygiene requirements as when this happens (not on every visit) the carers say we cant make her so we have to leave her to you to deal with and my wife then ends up doing the changes on her own if MIL agrees to it.
There is no POA in place as MIL totally refused to do one when she was able to and now she can no longer sign her name.
She has carers 4 times a day and each day she is getting more and more difficult with not only us but the carers.
She is double incontinent and bedridden apart from us being able to put her in a recliner chair when she agrees to it, so these changes are absolutely necessary so what if she totally refused is she to be left unchanged and unclean?
Of course my wife would never allow this even if it meant she changed her mother regardless of refusal, it just makes things all the more stressful and harder to cope when MIL has these moments and they are becoming more frequent and more aggressive in Tone! we tense up each time the door goes as MIL starts effing and jeffing "dont let them in I am not having it"
 

Lena G

New member
May 5, 2021
1
0
Hey there, I feel for you. My mum in very similar situation. However, we found that if her carers are very clear in softly explaining what they are doing at every stage. ie. Ann, I just need to turn you to the right so I can clean the left side of your body or Ann, I'm just going to gently lift your legs so I can slide your knickers on, she is much more co-operative. Also one of her daughters will often stay in the room and reassure her whilst she is being washed/changed, chatting about what they may have for lunch, singing a song that calms her. Finally, saying sorry and soothing her, when shes effing and jeffing (which my mum regularly does) also helps .

An alternative approach would also be when my sister actually hurtt her back and we explained that she is struggling to change mum, and" it would be so helpful if she could allow the carers to do this". This triggered my mums maternal instinct and once again created a little more co-operation.

Just a few things to try. Good Luck
 

Ton3

Registered User
Dec 2, 2019
23
0
Thanks Lena G for your reply, all sound advice sadly all of which we are doing even down to my wife does have a bad back but it all falls on deaf ears (not her fault I know!)
Today was a perfect example the carers spoke to her gently and reassuringly but she swore at them and resisted all attempts to change her, they managed to do it singing and jollying along but as soon as they were finished she exploded at my wife whom she aims a lot of her anger at, she has not really ever had what we call a maternal instinct she had a very bad childhood with her mother and carried this on with her own children only my wife would put this aside and continue to care for her which makes it so much more hurtful to watch how she treats my wife.
We are at a loss as to how to pacify somebody who just doesnt seem to now understand what you are trying to do is in her best interests when we told her the carers are helping to keep her at home and not have to go to hospital she just spat out that she didnt care and would go to hospital. I cant really tell you what a difference 40 mg of steroids made to her mood she was so much nicer and the carers had said how they loved coming to see her I doubt they will now be saying the same thing!
 

silkiest

Registered User
Feb 9, 2017
288
0
Hi @Ton3, your situation sounds untenable long term. Have you got a social worker involved? If not I think you need to contact social services and be very clear that you are heading for 'carer breakdown' as your wife cannot physically manage for much longer. I would point out your wife's health problems and remind the social services that they have a 'duty of care' for your MIL who is a 'vulnerable adult'. Unfortunately as long as you try and fill the gaps they will let you.
When MIL's carers said they could do nothing if she refused her medication ( which was the main reason they were going in), we talked to the Social Worker who assessed her along with the CPN and decided she did not have capacity to refuse medication. After this they were more persistent with her and after a few weeks she finally got used to the idea they would stay until she had taken them. Having said this she is now has continence issues and this is harder to deal with.
It sounds like your MIL needs 24 hour care, and your wife is doing it. Maybe you need to think about long term plans - this stage could last for years.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,331
0
Yorkshire
When we told her the carers are helping to keep her at home and not have to go to hospital she just spat out that she didnt care and would go to hospital.
hi @Ton3
I agree with Silkiest .... time to look into a move to residential care .... your wife has gone above and beyond, and it sounds as though the home carers are doing all they can .... in a care home, the staff have all day to pick the best time for personal care and are often able to build up a relationship with the resident to make personal care less stressful

personally, I would take what your MIL has said as her agreement to a move .... many don't get even that kind of permission
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,331
0
Yorkshire
hello @Lena G
a warm welcome to DTP

you are doing so well by your mum, she's fortunate to have you and your sister looking out for her

keep posting, it really does help to share experiences
 

Ton3

Registered User
Dec 2, 2019
23
0
Thanks for all your replies and as always there is comfort in the knowledge that we are not alone in this situation (sadly)
One of the reasons we continue (mainly my wife with my support) to keep MIL in her own home is because along with the Dementia she has very serious health issues which we have been told will shorten her life now so my wife wants to keep her in her own home until the inevitable end. if things deteriorate to a level we can no longer cope with we will of course have to reconsider. (consultant has said to up the steroids for a while to see if mood elevates again) Like many of you its a very sad and difficult disease to know what is the best or right thing to do so we will just go with our instinct....
 

Skippy43

New member
Jun 8, 2019
3
0
Thanks for all your replies and as always there is comfort in the knowledge that we are not alone in this situation (sadly)
One of the reasons we continue (mainly my wife with my support) to keep MIL in her own home is because along with the Dementia she has very serious health issues which we have been told will shorten her life now so my wife wants to keep her in her own home until the inevitable end. if things deteriorate to a level we can no longer cope with we will of course have to reconsider. (consultant has said to up the steroids for a while to see if mood elevates again) Like many of you its a very sad and difficult disease to know what is the best or right thing to do so we will just go with our instinct....
Have you thought about live in carers? We decided to go down this route as mum wanted to stay at home for as long as she could and it has made so much of a difference to us as a family as we are no longer having to come home from work and rush up to mums to do the bathing and cleaning up following accidents etc. Maybe in the future we will have to look at care homes but she has started to build up a good relationship with the carers who do 2 weeks on and 2 weeks off when another carer takes over. She will also do things for them that she wouldn’t do for us but I think it’s because they are trained in dementia care and are with her 24/7.
 

Islamag

New member
Oct 23, 2020
7
0
I really feel for you, I went through this with my mother and it is heartbreaking. I am disabled and in constant pain from osteoarthritis and I could no longer cope with her being difficult and aggressive. I managed for a while and then suddenly every time I bent towards her to give her food or to care for her she slapped me hard across the face. She was very quick with a slap across the face when I was a child, so it was as if she had just reverted to that.

There was a limit to me being able to cope with this and I had to find a care home place for her. It was something I had promised myself I would not do, but there comes a time when you realise you simply can't go on any longer.

The nurses in the care home found her difficult as well, and the doctor who cared for the residents prescribed Lorazepam to calm her and stop the unmanageable behaviour. It worked and she was much easier to deal with after that. So I think that as others have said it may have reached the stage where she needs constant care that her family is not able to provide. When this behaviour shows in a care home they will be able to get the right treatment very quickly to reduce this way down. My mother lived for another 5 years after going into care, I could never have managed to look after her for so long. I had already been coping for 3 years.

My husband has now developed mixed dementia and it is tearing me apart. I know what we are facing although he has never ever been aggressive so I think he is less likely to be like that than my mother was. I wish so much that better and more successful treatment could be found. It is not just the person themselves but the whole family who has to live through this nightmare.
 
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Islamag

New member
Oct 23, 2020
7
0
@Islamag that’s a shame about your mum hitting you, and now your husband has this awful illness. Every case is different though.

The slapping me was hard to cope with, but it is just the way she was. My worst fear was that she would push me over the limit of what I could manage and I would slap her back. I am glad to say I never did, but it was beginning to make me feel angry and I just knew I had reached the end of my ability to manage the situation.

My husband being diagnosed within 6 years of my mother dying just felt so cruel and unfair. However, the care he is receiving is so much better than what was provided for my mother. The GP calls regularly to find out how he is managing with medication and depending on the replies he adjusts it accordingly. The support worker also calls regularly to find out if we need any help. Because of COVID it is all by phone, but they are calling and so far not forgetting about us.

When it was my mother there was just no help or support at all. I had to fight for every tiny bit of support every step of the way. Then I had to contribute to the cost of her care for 5 years. My mother lived in a different area and had a completely different doctor who was basically not interested in helping in any way. So I had expected the same for my husband and I am so glad to say that it has not been like that.

It did take a very long time for communications from the hospital to get to the GP and Donepesil prescribed, but once started the care has been so much better.
 

Katyos

New member
May 18, 2020
4
0
I'm reading these posts sitting in the garden because I can't face going back into the house where my mum is sitting wanting to leave and blaming me for everything. Completely in denial about any dementia issues. I'm the liar and the worst person. Following a fall on 10th May she broke her hip. She recovered extremely well. We organised carers to come in and wash and dress her in the morning and get her downstairs. For a few days that worked but now she just wakes me up early and demands to go downstairs and refuses to wait for Carers or let them do anything for her. Today I helped her shower. She hadn't let the carers do it for a couple of days and they can't force her. I'm working full time often from home just to give her company but she doesn't appreciate it because she won't accept she needs it. If I'm not there she calls me even from room to room. But denies it. She can't remember anything but thsts my fault. I cant win. I was reading a post about agnosia or something I've that and it made perfect sense. But mum has always been self centred and as an adult I woukd say narcissistic. So I can't draw on happy childhood memories. It's just all too hard
 

TNJJ

Registered User
May 7, 2019
1,968
0
cornwall
I'm reading these posts sitting in the garden because I can't face going back into the house where my mum is sitting wanting to leave and blaming me for everything. Completely in denial about any dementia issues. I'm the liar and the worst person. Following a fall on 10th May she broke her hip. She recovered extremely well. We organised carers to come in and wash and dress her in the morning and get her downstairs. For a few days that worked but now she just wakes me up early and demands to go downstairs and refuses to wait for Carers or let them do anything for her. Today I helped her shower. She hadn't let the carers do it for a couple of days and they can't force her. I'm working full time often from home just to give her company but she doesn't appreciate it because she won't accept she needs it. If I'm not there she calls me even from room to room. But denies it. She can't remember anything but thsts my fault. I cant win. I was reading a post about agnosia or something I've that and it made perfect sense. But mum has always been self centred and as an adult I woukd say narcissistic. So I can't draw on happy childhood memories. It's just all too hard
I never had a happy childhood with my dad either. He sounds similar to your mum. I have just handed the care back full time to the carers as it has become so difficult to look after him. For a long time now it has always been about what he wants.For 5 1/2 years but after tomorrow it is about me. He is 88 in a few weeks and the thought of doing more was driving me to drink (not literally) . But he cannot push carers around like he does me. They have no emotional attachment. I do hope you sort something out. It is not fair.. I have LPOA so I can do other stuff for him.. But on my terms😀
 

Ton3

Registered User
Dec 2, 2019
23
0
Reading all your replies as much as it lets us see we are not the only ones going through this and in its own way is a comfort at the same time I cant tell you how sad it makes me feel to realise this disease is so widespread and affecting so many families, its heartbreaking.
At the moment MIL is in better moods for the most part with the odd refusal to let carers change her etc... My wife will not go down the live in carer route as without wishing to malign any professional carers she feels better being around (out of MIL eyesight) when her Mum is being difficult with the carers as they do sometimes say they cant force her so she wonders what would happen if she wasnt there to either encourage MIL or to change her herself? And she would be more worried sat at home.
The other difficult thing we have come across is Urine tests as so many infections have occurred with MIL and at the moment she is having Methotrexate injections weekly and if there is infection this needs to be stopped, getting a district nurse or GP in to do these urine tests has been nigh impossible and where I am working full time and my wife is with her mum she cant get to the surgery one to pick them up and more importantly to drop the specimen off so we looked online for a home test so we could at least report the result to GP over the phone and there was only one really suitable for people who are double incontinent and cannot use a commode etc as also MIL cannot tell us when she needs to go, and this was called a Tena U Test which apparently you put inside the pad and await the next change. Tena tell us however they stopped this test kit 4 years ago as not enough demand for it, which i am flabbergasted about with the amount of people i have read on here in the same situation as us. I believe it was not advertised enough or i am sure the demand would be there? So now its strips that we will have to try and get the urine from the pad....
 

doodle1

Registered User
May 11, 2012
256
0
Ring yourMIl’s GP and be very insistent she goes back on the steroids. The consul only sees her occasionally. You need to be tough here, explain the nightmare you are having on all fronts and be explicit.. Put everything in an email to the GP ,they can’t ignore it then.
 

Moggymad

Registered User
May 12, 2017
535
0
Have you heard of Newcastle pads? If you put this into the search above you will get a number of related posts on the subject. An online search shows they appear to be available to buy fairly easily. Of course getting a urine sample this way doesn't solve the other problem of getting the sample to the doctors for testing unless as you say you use the testing strips.
 

Ton3

Registered User
Dec 2, 2019
23
0
Thanks doodle1 and Moggymad for your replies, all good advice and appreciated. Call in to GP Surgery this morning (have to wait for a call back) and the Newcastle Pads on order.