Caring for someone you don't like

[Mum’s Drudge]

Hello @Mum’s Drudge
Im sorry you are finding it all so hard. The reality of caring is that it is easy to slide into and hard to get out of and all the while you are keep your mum safe Social Services will not be interested.
You definitely need help. I know your mum doesnt want anyone else in, but there comes a time when you have to change from enabling their wants to enforcing their needs and I think you have reached this point.
I was also interested to read that your mum found respite a positive experience. This sounds to me as though she would gain a lot from a care home. Why not book some respite with the option of it becoming permanent? My mum moved into a care home and she settled, made friends and was happy there. She was looked after in a way I could never have done, because there were a whole team of people looking after her and far more opportunities for socialising and activities than I could offer. I felt that moving her to a care home, although sad that she had reached that stage, was the best decision that I made for her.

Thank you Canary for your words of support and understanding.
I’m reluctant to go down the Care home route on a permanent basis at this point.
Mum actually thrived in the Care Home during her respite stay because it was a Care Home operating whilst in Covid lockdown restrictions ! She dislikes other people intensely and has , for most of my life, avoided “joining in” with any kind of fun activity so the social aspect of living in a communal residential setting is totally alien and abhorrent to her. She has hated going out anywhere , well before any kind of “lockdown” ever existed. It would be like torture for her , to enter a care home and to be made to engage with other people. There may be a time when her resistance to this has decreased enough to make it possible. I’m waiting for the Enduring Power of Attorney to go through the courts so I’m just taking one little step at a time , and not trying to make huge changes when it is all very overwhelming for me at the moment.
I did have to arrange a private consultation and assessment , carried out by a specialist psychiatrist for the elderly , while my Mum was in respite care, just so I could finally produce some proof of what I’d been concerned about (without being believed) to the social workers especially and that I was NOT imagining my Mum’s condition. Any formal diagnosis of my Mum’s “mixed dementia” has as yet been impossible due to her ability to pass the basic memory tests easily and to pass herself off as being totally competent. At least at last, the psychiatrist’s report has opened the eyes of the social care people and I hope they will finally start taking what I say seriously and actually believing me from now on!!! A GP referral to the proper hospital department and a consultant psychiatrist , who will finally diagnose and treat my mother , is now at last in the pipeline but waiting lists have always been incredibly long here in Northern Ireland and I have no idea when an appointment would come up , with Covid now in the mix affecting all face to face consultations. It’s a difficult long road ahead ......

 

[canary]

No one in a care home would force your mum to join in activities if she didnt want to - they are not mandatory - there are always people on the outskirts watching, or just sitting in a quiet corner. Care homes havent actually been very different during covid times, except that relatives havent been able to visit much and outings (for those who want to go) havent taken place. If she thrived in covid times she will thrive at other times too.

 

[Mum’s Drudge]

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No one in a care home would force your mum to join in activities if she didnt want to - they are not mandatory - there are always people on the outskirts watching, or just sitting in a quiet corner. Care homes havent actually been very different during covid times, except that relatives havent been able to visit much and outings (for those who want to go) havent taken place. If she thrived in covid times she will thrive at other times too.

Thanks but I also cannot force mum to go into a care home when she adamantly says she won’t go.
The last time was emergency respite for me and she had to finally concede that she couldn’t stay at home with me being so ill and she wouldn’t accept any care package either. That’s why I said I think that it may take another emergency situation before anyone could persuade her to go again - it took ten days to get to the point where she finally but reluctantly agreed .
I would hope, when it came to the next time (and there will undoubtedly be a next time) , that Mum would be able to get an available place in the same care home as it was excellent , as far as I could see , from the outside and from the phone calls with the staff. She was in total isolation for the majority of her stay which was when she really seemed better and happier than she’d been for years and enjoyed all the people running after her (even they subtly hinted about how demanding she was!) - she was self-isolated because of Covid restrictions despite having a negative Covid test result and she was happier with that because there was nobody constantly trying to persuade her to leave her room and mix with others . They did start that persuasion however after the fourteen days of self -isolation finished but she kept saying “no” and they would be doing that, as they are very conscious of the benefit of maintaining contact with other people even if my Mum would not ever see it that way! Mum actually did go downhill after that isolation period , likely down to the daily challenge of being asked to go outside of her comfort zone and private area and she then didn’t want to stay there when there was more relaxing of the rules about where she could go within the home . I think she also saw , for the first time , the other residents who were far more advanced with dementia and I’m certain that was frightening and upsetting for her and I can certainly empathise with that. She’s not one to have a positive attitude or able to face difficult or uncomfortable situations. She became pretty fed up with being there towards the end of the three weeks and I received increasing numbers of phone calls from Mum, asking me when she would be allowed to go home. I think there would always be that kind of thing , until she got to a point where she wouldn’t remember home or me. That’s when I know I will have to let her go into a residential placement, for both our sakes . No-one knows when that time will come however so it’s one day at a time until then.

 

[Sarasa]

I would at the very least put your mum's name down for that home @Mum’s Drudge, and maybe look at a few others. Putting her name on a waiting list doesn't commit you to anything, but at least you know if you did need to move fast in an emergency you might be able to move her in quickly.
I moved my mum into care very much against her will. She was becoming a danger to herself and to others and although she'd lost the capacity to make reasoned decisions was in denial that anything was amiss. I decided I'd rather deal with her being furious at me for engineering the move than I would be picking up the pieces after she'd had an accident or worse. Now two years down the line mum is pretty settled there, yes the first few months were tough, but it was the best option.

Edited to add this link which you might find useful:
https://www.alzscot.org/sites/default/files/images/0000/0275/lettinggo.pdf

 

[Jaded'n'faded]

@mum's Drudge I feel for all of you caring for someone when you don't want to. My mum had been gradually deteriorating but was still managing fine on her own. Then she had a fall, hospital stay and a move to a care home engineered by me. I recall at one point a social worker saying, 'Wouldn't you rather she came to stay with you?' and thought, 'Are you mad? This is my mother!' Even if I'd had a mansion I would never have invited mum to stay here. My brother felt the same so we did what we had to (well, mostly me) in order to ensure her safety - she needed 24/7 care and there was no way I was going to do any hands-on stuff.

But you raise some valid points. All the literature talks about caring for a 'loved one' and assumes you are really close and that there's nothing you'd like more than to give up your life and care for this person. In my case, nothing could be further from the truth. Not all families are happy familes and it's about flippin' time somebody recognised and acknowledged that!

Mum changed as the dementia progressed and the person the carers saw was not the person I'd known all my life! To them she was a feisty but likeable old lady whereas she continued to be pretty horrible to me. But usually not when others were around. Most of us have experienced this type of behaviour (known as 'hostess mode') and it's really frustrating when they are a complete pain with you but nice as pie and seemingly very able when any medics or social workers visit.

Good luck! Collect up all that guilt and put it in a little box at the back of the airing cupboard where it belongs! Reclaim your life.

 

[Mum’s Drudge]

@mum's Drudge I feel for all of you caring for someone when you don't want to. My mum had been gradually deteriorating but was still managing fine on her own. Then she had a fall, hospital stay and a move to a care home engineered by me. I recall at one point a social worker saying, 'Wouldn't you rather she came to stay with you?' and thought, 'Are you mad? This is my mother!' Even if I'd had a mansion I would never have invited mum to stay here. My brother felt the same so we did what we had to (well, mostly me) in order to ensure her safety - she needed 24/7 care and there was no way I was going to do any hands-on stuff.

But you raise some valid points. All the literature talks about caring for a 'loved one' and assumes you are really close and that there's nothing you'd like more than to give up your life and care for this person. In my case, nothing could be further from the truth. Not all families are happy familes and it's about flippin' time somebody recognised and acknowledged that!

Mum changed as the dementia progressed and the person the carers saw was not the person I'd known all my life! To them she was a feisty but likeable old lady whereas she continued to be pretty horrible to me. But usually not when others were around. Most of us have experienced this type of behaviour (known as 'hostess mode') and it's really frustrating when they are a complete pain with you but nice as pie and seemingly very able when any medics or social workers visit.

Good luck! Collect up all that guilt and put it in a little box at the back of the airing cupboard where it belongs! Reclaim your life.

Och I loved reading your response ! It’s so good to hear that I’m really not alone as so often I’m made to feel like such a nasty person when I voice how horrible mum’s behaviour is. I don’t know if it is just a Northern Irish thing of lots of people wishing to heap religious-based type guilt on top of what I already have but I am constantly being scolded with “god forgive you for saying that!”. I’m only being totally honest and they may have had a wonderful loving warm family upbringing and can’t imagine it ever being otherwise but I’d like them to be in my shoes for half a day and see how warm and cuddly they’re feeling after that!!

 

[Mum’s Drudge]

Thank you Sarasa. The care home in question does keep rooms available for people who need a place in a hurry but I will now phone the manager again this week and see what she says about me possibly making sure that my Mum is on her waiting list. I liked the house very much and it’s in a beautiful setting and close to our own house so would be so easy to visit regularly without me getting exhausted with that kind of thing too. I have ME and Fibromyalgia and now much worsening arthritis so I know I need to reduce this extra load of stress ASAP and think about how to change my behaviour and stop running my batteries down each day. I’m looking into a highly recommended small local day centre too even though I know I will need one heck of a push to get Mum inside !!! I wasn’t sure if they were open again and the social workers have not been either keeping in touch with me not very helpful with information in the past so I have gone ahead this afternoon and have sent an enquiry about waiting lists and costs at the day centre and asked if they would consider taking on my Mum. I don’t want to get my hopes up but the thought of at least one day in the week where I could either get out and relax or just stay here at home and not be tense the whole time , is very very nice - for once being able to have the place to myself where I could again just sit and actually listen to my music or just get on with some study or some artwork - just something to help me feel like a human being again with my own interests - without any interruptions or anything triggering off my anger or stress!!

 

[Lucy Young]

Hello @Mum’s Drudge
Im sorry you are finding it all so hard. The reality of caring is that it is easy to slide into and hard to get out of and all the while you are keep your mum safe Social Services will not be interested.
You definitely need help. I know your mum doesnt want anyone else in, but there comes a time when you have to change from enabling their wants to enforcing their needs and I think you have reached this point.
I was also interested to read that your mum found respite a positive experience. This sounds to me as though she would gain a lot from a care home. Why not book some respite with the option of it becoming permanent? My mum moved into a care home and she settled, made friends and was happy there. She was looked after in a way I could never have done, because there were a whole team of people looking after her and far more opportunities for socialising and activities than I could offer. I felt that moving her to a care home, although sad that she had reached that stage, was the best decision that I made for her.

I totally agree with you - as difficult as it is, there comes a point where their needs take priority over what they want (in the nicest possible way). My mum moved into sheltered accommodation last week and she seems really settled (we'll see, I know what she's like!). It's a huge relief to us because she was living with us for the last 8 months and it was pretty intolerable at times. I do worry about her though even though it's absolutely the best decision, I guess that worry will never go away but it is what it is.

 

[Banjomansmate]

Hope things continue to go well Lucy. ? ?

 

[Lucy Young]

Hope things continue to go well Lucy. ? ?

Bless you, thank you x