Refusal to have carers

[gene genie]

Well as some of you may know mum came out of hospital last Wednesday, carers were to come twice a day mornings and evening to help with personal care, and so hopefully to give me 20 /30mins break.
Right from the start she didn't want them but just about tolerated them until Sunday, when all I heard was I don't want people in I can manage, it became so bad yesterday that although mum had been up in the night she took herself back to bed (a first) at 8.45, carer arrived as usual 9.45 I know mum was awake as I could see through her doorway, but she wasn't getting up, so to save mum being annoyed again I told carer to leave it as mum wasn't up yet, HEY HO, two minutes later she gets up, lol G n short of it is I've now cancelled the carers all together as I can't face the twice daily battles. So this now means it's all up to me,
Got up this morning 6.45 (and I must of slept through mum getting up) to find mum asleep on the sofa fully clothed ( she can dress herself after a fashion but it's difficult for her and really exhausts her,) with coat on heating switched on full blast.She has a hospital appointment today for which I've arranged transport and a wheelchair butt it's not until 2 pm. So now will need to undress her to get her incontinence pad changed etc washed and redress her, life is just so much fun don't you find.
Not really looking for advice but just amazed at her determination to get her own way!

 

[Mrs Badger]

Well as some of you may know mum came out of hospital last Wednesday, carers were to come twice a day mornings and evening to help with personal care, and so hopefully to give me 20 /30mins break.
Right from the start she didn't want them but just about tolerated them until Sunday, when all I heard was I don't want people in I can manage, it became so bad yesterday that although mum had been up in the night she took herself back to bed (a first) at 8.45, carer arrived as usual 9.45 I know mum was awake as I could see through her doorway, but she wasn't getting up, so to save mum being annoyed again I told carer to leave it as mum wasn't up yet, HEY HO, two minutes later she gets up, lol G n short of it is I've now cancelled the carers all together as I can't face the twice daily battles. So this now means it's all up to me,
Got up this morning 6.45 (and I must of slept through mum getting up) to find mum asleep on the sofa fully clothed ( she can dress herself after a fashion but it's difficult for her and really exhausts her,) with coat on heating switched on full blast.She has a hospital appointment today for which I've arranged transport and a wheelchair butt it's not until 2 pm. So now will need to undress her to get her incontinence pad changed etc washed and redress her, life is just so much fun don't you find.
Not really looking for advice but just amazed at her determination to get her own way!

 

[Mrs Badger]

I know the feeling, my heart dropped when mum asked me to cancel careers, she never let them near her though, said they didn't do anything! She wouldn't let them.
She has a cleaner, weekly but insisted now only once a fortnight.....not enough place is a mess. So I pick up the tab! She is in denial re incontinence which I find difficult as she won't use her washing machine and does it in the washing up bowl! I now do a sweep and bag it discretely with the sheets and nighties. Luckily she hasn't noticed. I put pads in all her pants but noticed she hadn't used them and avoids the issue. The place smells will have to borrow daughters shampooed again!
The memory nurse visited and removed two blister packs she wasn't taking half her meds nightmare. I am mentally numb, and becoming very negative.

 

[lemonjuice]

Not really looking for advice but just amazed at her determination to get her own way!

Oh despite the disease they retain all the wiliness and cunning believe me.

I hear the desperation in your post and many of us have been there too.

With my own mother I decided not to have 'carers, but new 'friends' who came to help me out and provide 'different company'. I was fortunate in that I knew a friend who had worked as a carer who could do one day a week and also my son knew a carer who worked for an agency and we requested her. So I was able to be absolutely truthful and introduce them as 'my friend' and 'a friend of XXX '(her grandson). Initially they just chatted and had a drink with them and also we had an arrangement with the agency that the carer would wear her ordinary clothes with her 'badge identification under a jumper/ out of sight', so as not to frighten my mother. Gradually we manage to extend the 'duties' and my mother was so grateful to her newfound 'friends'. She'd worked with young and old colleagues and therefore was quite happy befriending someone much younger, so that helped.

Keep posting and hopefully some other may be able to suggest other ideas.

 

[Dawnwright]

Well as some of you may know mum came out of hospital last Wednesday, carers were to come twice a day mornings and evening to help with personal care, and so hopefully to give me 20 /30mins break.
Right from the start she didn't want them but just about tolerated them until Sunday, when all I heard was I don't want people in I can manage, it became so bad yesterday that although mum had been up in the night she took herself back to bed (a first) at 8.45, carer arrived as usual 9.45 I know mum was awake as I could see through her doorway, but she wasn't getting up, so to save mum being annoyed again I told carer to leave it as mum wasn't up yet, HEY HO, two minutes later she gets up, lol G n short of it is I've now cancelled the carers all together as I can't face the twice daily battles. So this now means it's all up to me,
Got up this morning 6.45 (and I must of slept through mum getting up) to find mum asleep on the sofa fully clothed ( she can dress herself after a fashion but it's difficult for her and really exhausts her,) with coat on heating switched on full blast.She has a hospital appointment today for which I've arranged transport and a wheelchair butt it's not until 2 pm. So now will need to undress her to get her incontinence pad changed etc washed and redress her, life is just so much fun don't you find.
Not really looking for advice but just amazed at her determination to get her own way!

 

[Putford]

I feel for you Gene Genie, but don't give up.
Both of my parents have dementia and won't accept help, mum had a fall (I still don't know what happened) and went into hospital, when she came out SS visited twice a day, mum made it very difficult for them and to only come once a day as everything was goo, eventually told them not to come at all because they were fine, SS have lots of people that are in need and so they did what was asked, now things have returned to crisis point again because they don't want intrusions.
Like lemonjuice says - they still have cunning and are willing to use it to get what they want! As I live 5 hours away from them it's difficult but all I can do is my best.

 

[Selinacroft]

I still have battles, some days carers are repeatedly told in no uncertain terms "Go away , leave me alone" I don't cancel them but I divert them to do other useful things-ironing, emptying dishwasher, cleaning, hoovering etc

 

[Dawnwright]

This is my first time on this forum, so forgive if I am not following the correct protocol, but I saw your post and had to comment. Your mum seems further down the road than mine but I Am having a similar problem. Earlier this year I tried to get careers in for my dad who was quite poorly he was 89 and had renal problems. My mother however said she did not want them in the house, so that was that! A few days ago my dad died and my mum has lost 40 years .asking for her mum and dad etc. She refuses to accept that she needs help but she forgets that he has passed on and gets very upset over and over again. I stayed with her the first few nights and was up all night because she kept looking for him out the window. Last night I could not stay as I had to go back to work so she went to her neighbours who ended up staying with her all night.My mum denied that it happened and refuses to believe that she needs help telling us all to go away and leave her alone. I don't know what to do and I cannot give her all the time she needs. How you do it for your mum I really don't know as I am worn out already and am not coping too well myself. Does it get easier or do you just have to give up living your own life? I have total respect for anybody who cares for anybody with this dreadful disease because I am starting to realise what a commitment it is. I hope I cope with the challenge ahead as well as you, although I do not think That I will. Please do not wear yourself out though as that won't help anybody, sorry I can' offer any more practical advice but I wish you all the very best, it sounds like your mum is very lucky to have you to care for her.

 

[HillyBilly]

Hello @Dawnwright. Sincere condolences on the loss of your Dad. These must be very tough times for you all x

 

[Rosettastone57]

Well as some of you may know mum came out of hospital last Wednesday, carers were to come twice a day mornings and evening to help with personal care, and so hopefully to give me 20 /30mins break.
Right from the start she didn't want them but just about tolerated them until Sunday, when all I heard was I don't want people in I can manage, it became so bad yesterday that although mum had been up in the night she took herself back to bed (a first) at 8.45, carer arrived as usual 9.45 I know mum was awake as I could see through her doorway, but she wasn't getting up, so to save mum being annoyed again I told carer to leave it as mum wasn't up yet, HEY HO, two minutes later she gets up, lol G n short of it is I've now cancelled the carers all together as I can't face the twice daily battles. So this now means it's all up to me,
Got up this morning 6.45 (and I must of slept through mum getting up) to find mum asleep on the sofa fully clothed ( she can dress herself after a fashion but it's difficult for her and really exhausts her,) with coat on heating switched on full blast.She has a hospital appointment today for which I've arranged transport and a wheelchair butt it's not until 2 pm. So now will need to undress her to get her incontinence pad changed etc washed and redress her, life is just so much fun don't you find.
Not really looking for advice but just amazed at her determination to get her own way!

Please do not give up with this. .Unfortunately the refusal to accept that they need care is part and parcel of this disease. About three years ago my husband and I put carers in place for my mother-in-law and this was before she was diagnosed with dementia and she had mobility problems and was having difficulty preparing her own food and drink. We found that unless we had somebody in in the morning she would simply lay in bed all day. In her case she lives near to us in our own property she is self funding and lives on her own she is 92.

At first we organised a half hour visit Monday to Friday mid-morning this gave the opportunity for mother-in-law to at least do her own personal care of sorts and get dressed before her new "friend" turned up. The care plan was that the carer was to do light housework make sure she has something to drink and if necessary make anything else for breakfast if she hadn't had something already. Of course there was terrific resistance to this but we decided to organise it anyway whether she liked it or not we could see she was deteriorating fast and it would have come as no surprise to us that a year later she was diagnosed with mixed dementia.

Eventually mother-in-law came to expect the new carer in the morning and eventually it became simply that the carer was a paid talking companion.

We didn't object to this idea of being a paid talking companion as we felt at least it gave mother-in-law some sort of motivation to get up in the morning and at least dress herself properly. About six months down the line we went away for a few days over a weekend and we told mother-in-law that we would be extending the care to the weekend as well. Again tremendous resistance the usual thing I don't need anybody etc. My husband took the stance that he would just tell her that he was in charge now and he knew what was best and it was happening.

Once a diagnosis happened we then extended the care to include lunchtime visits because by then it was quite obvious that she lost the capacity to prepare or cook anything for herself.

Everytime my mother-in-law says I don't need these people they don't do anything we tell her is that it's free and simply we're in charge now. It helps that we have power of attorney over finances all the bank things have gone paperless and she never gets any post anyway. Now we've got to the point where she gets quite anxious and agitated if the carer doesn't turn up on time. She's come to expect it now and knows no different she thinks it's just normal.

 

[rosy18]

Hi gene genie my Mother is now in latter stages of alzheimers and initially I refused all care as Mum was adamant she didn't want any other help so I muddled through on my own,Mum and I live together, but then Mum had a fall and was taken to hospital to check nothing was broken etc and the doctor was amazed that I had no help basically telling me I was wearing myself out and should get help and so like lemon juice I got carers in on the pretense that they were just coming to help me do a bit of cleaning and when they arrived I just made a coffee and together we all sat and chatted with me just leaving the room every now and again for 5 or 10mins and we did this for a little while 4 mornings for 2hours a week and then increased to 7 days and am just starting having cares for 30 hours a week. It all took time but I'm so glad I persevered as it's such a relief to know that you have that bit of support at home and I now wish I'd have done it sooner. Sometimes I have to admit it can feel a little intrusive but the support I get as well from the care team makes it worthwhile.
If I was you I would definitely try and introduce carers as a friend or cleaner.
Good luck xx

 

[father ted]

I'm amazed at your determination, forget your mother's!

Please do as others have said and persevere with carers. You may find in the short term it is more stressful for you to put your foot down but in the long term it is best all round. As selinacroft says you can get them to do other stuff initially which will lighten your load.
Caring is such a hard, hard job. Make it as easy for yourself as possible. It will work out in the end.

 

[gene genie]

I'm amazed at your determination, forget your mother's!

Please do as others have said and persevere with carers. You may find in the short term it is more stressful for you to put your foot down but in the long term it is best all round. As selinacroft says you can get them to do other stuff initially which will lighten your load.
Caring is such a hard, hard job. Make it as easy for yourself as possible. It will work out in the end.

Thanks all for your replies/support, I will get carers back in further down the line, I didn't realise that the refusal to have carers was part of the dementia.
I'm now doing everything myself and unfortunately last night 3.15am mum woke with with the t. V. Full blast I went into lounge and grabbed the remote to switch it down, (scared of waking our grumpy next door neighbour) and a bit peed off with the noise myself if I'm truthful, told mum 'what u doing with TV on so loud it's quarter past 3' her response her response loudly No ITS Not its quarter past 9,fraid to say I shouted back its bloody not and we all need some sleep. To be told Im always getting at her in a morning, this is because of the discussion re the carers the other day.
Left mum on the sofa &,went bk to bed, up this morning and she is slumped 1/2 in 1/2 out of bed, so I'm Sat watching in case she falls as I can't face putting her fully in bed as this will wake her, feel like the world worst person how can I shout at her /lose control it's not her fault she's up at all hours.
Just to add mum is fairly logical/compis mental a lot of the time and we are awaiting a formal diagnosis, although the hospital docs agree she has dementia they wouldn't diagnose whilst she was in hospital so waiting for memory Clinic to say for definite on 31/10/17. Although all medical people say she has it, cares too age u. K support worker, sister at the hospital and her behaviour say so, I'm scared we can't get a diagnosis to access support.

 

[Angloirishgal]

The issues with carers is one I think a lot of us face, and some of the ideas I've seen here are excellent. I'm in awe of the way people have tackled this issue. I live with my mother and have done for nearly two years. She initially wasn't looking after herself so I gave up my job, took early retirement and moved a couple of hundred miles back home to be with her and also within visiting distance of dad, who had vascular dementia and was in a care home about a mile away. I'd walk to visit him and mum was OK with visiting him with me, then her visits dropped off (she detests care homes). It became obvious that she no longer cooked, bathed, or could handle her finances or shopping, so I moved in. We moved house in May last year, a month after which dad died. Since then, until quite recently, I've managed mum quite well and am aware of how long I can leave her for (she is formidably independent) at least for now. Tomorrow, I'm meeting friends and will be out from early morning to about 8pm and arranged for a friend of mine, who is a carer by occupation, who will come and sit in the flat while I'm out. I've arranged everything to the nth degree but last week mum had a hissy fit and demanded I don't have this friend of mine around; since then she hasn't mentioned it but I'm dreading tomorrow, when she wakes up and realises I'm not there as I have no idea what she will do. I'm just keeping my fingers crossed and hope she will accept it (there's no telling what she will do although she's not violent, but she can be incredibly awkward!). I'm having to just pray she will behave herself but still have to inform the carer/friend that she might be a bit difficult and not to take any notice of it. It's not helping that we've been told we have to sort out our own carer and pay for her ourselves, even though we're on benefits and are well below the ceiling of £16k above which you have to pay. I can't believe this but it's what I've been told. Has anyone else been told this, and who have you spoken to?

 

[Bod]

"Driving Miss Daisy." Early on in the film there is a scene.
The son(of Miss Daisy, who is elderly, etc.) makes it very clear to the new chauffeur, just who he works for, and more importantly who can fire him. It's not Miss Daisy!
Sometimes this has to be done, and the flack ignored, eventually it will work out.
Good to really good carers know this, and will allow for it.
It's us, new to the situation, who have to be strong. (and suffer)

Bod

 

[HillyBilly]

The issues with carers is one I think a lot of us face, and some of the ideas I've seen here are excellent. I'm in awe of the way people have tackled this issue. I live with my mother and have done for nearly two years. She initially wasn't looking after herself so I gave up my job, took early retirement and moved a couple of hundred miles back home to be with her and also within visiting distance of dad, who had vascular dementia and was in a care home about a mile away. I'd walk to visit him and mum was OK with visiting him with me, then her visits dropped off (she detests care homes). It became obvious that she no longer cooked, bathed, or could handle her finances or shopping, so I moved in. We moved house in May last year, a month after which dad died. Since then, until quite recently, I've managed mum quite well and am aware of how long I can leave her for (she is formidably independent) at least for now. Tomorrow, I'm meeting friends and will be out from early morning to about 8pm and arranged for a friend of mine, who is a carer by occupation, who will come and sit in the flat while I'm out. I've arranged everything to the nth degree but last week mum had a hissy fit and demanded I don't have this friend of mine around; since then she hasn't mentioned it but I'm dreading tomorrow, when she wakes up and realises I'm not there as I have no idea what she will do. I'm just keeping my fingers crossed and hope she will accept it (there's no telling what she will do although she's not violent, but she can be incredibly awkward!). I'm having to just pray she will behave herself but still have to inform the carer/friend that she might be a bit difficult and not to take any notice of it. It's not helping that we've been told we have to sort out our own carer and pay for her ourselves, even though we're on benefits and are well below the ceiling of £16k above which you have to pay. I can't believe this but it's what I've been told. Has anyone else been told this, and who have you spoken to?

I hope you get your day out and are able to enjoy it.
Are you in the UK?
Your Mum is entitled to a needs assessment and you to a carer's assessment. It doesn't sound right that your Mu m is paying everything towards her care. The upper limit is around 23000, the lower around 14000.
Maybe you would like to start a thread "of your own" to ask such questions. I'm sure you will receive plenty of advice.