How to approach a conversation about having carers

[FiveFoxes]

Mum has Alzheimer's. She lives alone with help from me. For example, I do her shopping, take her to medical appointments, fix things that go wrong, help her to be able to do things for herself.

However, I don't think she is changing her clothes or washing anymore. I suspect she sleeps in her clothes too. I therefore think it is time she has some external help.

How is it best to approach the conversation with her without it sounding like "you are dirty and need help!" even though that's it.

When I mentioned she might like a cleaner in the past she got very upset and told me I didn't want her anymore. That was a while ago and she will have forgotten that conversation now.

She is mentally well enough to know she's not changing her clothes because it's difficult for her. But she's a very private person...

Is there any guidance on how best to approach this?

Also, and equally important, how do you go about finding and choosing carers? Do you interview them and give them a trial?

Other important information:

She will be self funding any care.

She has some kind of GP dementia review coming up, but that might be health and medical related rather than the social care side.

My Mum has Home Instead which I think has local franchises. They provide a range of services but also companionship. What I found was you need to be clear about what you want them to do.

For my Mum they clean and take her shopping. That is all she needs now.

As for talking about it, if you find the magic words please let me know.🙏 Be prepared for your Mum to be really stubborn about it and resent paying.

WRT washing etc. they can just be there and assist if she needs it rather than doing the full personal care.

Is she claiming carers/attendance allowance for a start?
Did you know with dementia she won't need to pay council tax?
With the above in place my Mum was more accepting that her free money paid for 'home helps' (she wouldn't accept the word carers)

Hi @FiveFoxes . I’m in a fairly similar situation. Mum has recently diagnosed Parkinson’s. She is experiencing cognitive decline, probably more than she realises. It’s now very noticeable in dealing with her, and trying to assist her with financial and practical matters. She seems unable to learn new things any more and gets into a terrible state using her phone or negotiating NHS appointments. I don’t see her regularly because I live at some distance and have a very debilitating chronic illness. I get reports from my brother who visits approximately monthly.

She agreed earlier this year that she could benefit from help with shopping and getting to appointments, possibly hair washing, and I thought this could be a way into trying out having care. however whenever I suggest moving forward on this she always says she will ‘think about it’ and make some calls herself…then doesn’t because she is ‘too busy’. I know that if I try to push her I’ll get a lot of resistance and aggression, which is outside of our normal relationship and very difficult.

She would be self funding so I have made a few provisional calls to care agencies, one of who I used myself some years ago. The process seems to be that they come and do a care assessment which would be quite a detailed chat lasting an hour or more. I phoned one this week, Home Instead, who said they would send the same carer every time and that they would introduce 2 carers initially so that they could cover each other. It’s my impression though that Home Instead are the top end of the market.

You can also employ carers privately - but then it’s completely on you to manage them and in your mum’s case with loss of mental capacity, an agency might be the best way to go at least initially.

It also might be good to get a needs assessment from your Council - I don’t think they’ll fund anything if she is over the threshold but it might be good to have a professionals view of her care needs.

How to approach the conversation- I have no easy answers I’m afraid, and the parent- child dynamic makes it much more difficult.

When I needed to have this conversation, firstly with my DM and then my DH, I found it helpful to have someone with me. On one occasion it was someone from the Council, ?Social Services. I also invited my son in law when we needed POA completed as I knew DH would respect his opinion. A friend also provided back up with DM.

I have seen adverts for Home Instead pop up. They do sound good in those. Thank you, I'll look into them.

She doesn't currently claim AA as she doesn't need it (financially). She is, however, very reluctant to spend any money on anything so I could use it as an incentive as suggested so thank you.

Thank you for the information about the consultation appointment, that sounds good. Do you know how it works after that- for example if they are rubbish after a month or two how easy it is to cancel the contract?

I suspect my Mum actually expects that I should do everything for her that she can't do for free. Which is very unfair seeing as she barely saw her Mum when she was elderly and never provided any help!

I feel guilty about not doing more, whilst simultaneously feeling her life and needs shouldn't trump my family. I am still quite young with a job and teenagers.

I help an elderly friend and he was reluctant to pay for carers initially but once he could see that he had Attendance Allowance he didn't mind so much as it covers the majority of care if you get the higher rate. It's not means tested. The carers 'don't do a lot' according to my friend but they are someone having eyes on him twice a day, morning and evening and I think he actually enjoys seeing them on days he doesn't see anyone else.

I should also add that the agency my friend has carers from seems to really try and arrange for the same carers to do a few consecutive days, so although he has different carers over all, they all are fairly familiar as he's seen them for a few days at some point. This makes a difference as he knows their names, where they are from etc, so they are less like strangers coming in.

@FiveFoxes I think it’s 2 weeks notice to make changes to the Home Instead contract. This can be to add or remove care or one offs.

Like you my parents did not do the care for either of their parents. I am disabled and live an hour away. I am clear what I will and will not do. As I see it buying in care enables me to spend quality time with my Mum.

I fully empathise with your situation. Things came to a head with our Mum when she broke her hip and therefore there were things she just couldn't do for a while that I have now put in place ongoing.

Cleaning was one of them. She now has a cleaner each week as I was finding myself cleaning for hours every time I went up as the house had got itself into a bit of a state. This means I can now spend time with her and not doing tasks - she is happy about this too.

It can be a case of drip feeding the conversation. Now Mum is used to one person in the home we are now looking at introducing a paid carer couple of times a week for social stuff - we have framed it that we are all working, nights are closing in so by the time we finish work to be available it is dark whereas a carer can take her out and about whilst it is still light etc.

She is mentally well enough to know she's not changing her clothes because it's difficult for her. But she's a very private person..

Do you mean it's difficult for her to change her clothes? If so could you encourage her into clothes that are easier to get in and out of such as wide legged trousers, easy to put on tops etc depending on what the difficulties are.

At work we recommend these guys for advice around choosing care when it's self funded: https://carehomeselection.co.uk/find-care/

Ignore the name! They do help with finding at home care too.

If you Google "Connect to Support" you might find something in your area too, they can signpost to care agencies etc.

With your mum having Alzheimer's it might be worth exploring Admiral Nurses; they support the carer/family of the person with dementia and are a great source of advice.

I think you have to have boundaries otherwise you’re put in a position of meeting a bottomless pit of needs. Some elderly parents expect an awful lot, especially from their daughters. My MIL resents my SIL not visiting more (even though SIL visits daily), and not providing all her care, even though she has many other visitors plus 4 carer visits a day. My MILs yardstick is her own youth, when ‘ daughters looked after their mums’ but she forgets that the daughters were much younger and the mums usually didn’t live nearly as long with debilitating conditions.

I honestly think your first duty is to your children and you shouldn’t feel guilty about not doing everything for her. It would be good to get some support in place so that it’s not all on you if/ when she needs more.

edited to remove typo

One of the easiest ways is to suggest it's you that isn't coping with running 2 homes and you need some help. Start with shopping cleaning washing. Get someone through the door to start building a relationship, then they can gently start to do a little more - a once a week shower ( 'someone around in case you fall') and a change of clothes ( I know this isn't probably what you would like but slowly slowly usually achieves the best result....for your mum it will be admitting she can't do it anymore which is a big mental shift even with the Alzheimer's diagnosis.

I also think the word 'home help' seems an easier fit for a mindset for some elderly people with capacity than carers

I like the suggestion of ‘home help’, might try that in place of ‘cater’, which isn’t going down well at all.

Good points about Attendance Allowance being a way to persuade her financially. She can afford to pay for help, but she can also afford to pay for heating. That's now a constant battle because she thinks she can only have a limited amount because of losing the WFA, despite the fact that she doesn't need it. Alzheimer's affects the judgement as well as memory.

Mum is quite antisocial too. Any 'help' I received seemed to focus on her going to various social things which she point blank refuses to do, despite complaining she never sees anyone. Sigh.

Thank you for the suggestion about looser and easier clothing. She already had that, but now seems past being able to put arms in sleeves etc.

Thank you for the suggestion, I will look at carehomeselection.co.uk/find-care/

Thank you for the suggestions of introducing someone slowly and the idea of calling them a 'home help'. I will try them! Although I think Mum thinks of me as a home help!

Partly due to the Alzheimer's and partly due to her personality, I get the feeling she doesn't really care or think about my life away from her. She is purely focused on herself and her needs. She has also lost most of her concept of time, so will ask me to do something at 5pm one evening and then at 7am the next day she'll be asking if it has been done, and the something is never urgent!

Thank you again everyone for your help and sympathy and sorry for everyone else going through this too. Sorry I didn't @ anyone or quote you in my replies - I am on the app so quite hard to remember names and I didn't want make the thread massively long either.

I persuaded my mother to have Home Instead under the guise of 'cleaner' who was background checked and could be easily changed out if mum didn't get on with them. I pointed out that she would need someone eventually and it would be better to get on Home Instead's books with someone coming for a couple of hours a week and then gradually increase them as needed. I told her that there was a great demand for care staff and if she left it too late she could have problems finding someone when she did need them.

I think, dementia or not, they often lose the ability to empathise or see all the other things going on in someone's life.

It was the point when mine told me how much something was "easier" for me, when the exact opposite was the case, that I realised how warped her sense of reality and any empathy had become.

It's the same with factoring in travel time to visit them, the reality of full time jobs and bringing up children.

@EmotionalBlackmail i gave just had the same experience this week with mum telling me how much easier I have it and how I have never really had to work for anything, despite working ft in a stressful job, looking after 2 kids and both of them!

At this point, she was working 2 days a week, one child and parents on the other side of the world being looked after by her siblings. Not that it is a competition but like you said, it is like a warped sense of reality.