At what point are we eligible to get care?

Hello lovely fellow carers. I hope your today hasn’t been too fraught.

Mum has dementia. It’s mid-stage so she’s living independently in sheltered accommodation. She finds her way around and manages basic self care. She is forgetful and can get very confused. We try to turn off the dangerous things like oven and she gets food at the retirement canteen so no need to try to cook as she doesn’t manage hot things. The most difficult thing is her intruder delusions and paranoia and anxiety. Pre-dementia she was already suffering from lifelong depression and body dysmorphia and attachment issues.

I’ve read a million things on how to handle these. I don’t think I always do well but I can talk Mum round. Some days are fine but other days, like today, are very not fine. I am unable to return to the office because I never know when I’m going to get the call. The calls happen often. More and more often.

I have spoken to the GP and memory unit. They say her delusions aren’t that much and I should be able to handle them. I have spoken to one private care agency and they say I should be able to handle them. They offered hour-slots for care with caveats that Mum’s pre-existing mental health problems meant they couldn’t just give companionship slots. Anyhow, they never got back to me.

She does need stimulation and I have a local volunteer taking her to tea at church on Thursdays and a music therapist to do singing on Fridays. I’m on call regardless and there each evening, if not during the daytime too.

The thing about people popping in is that, from experience, they tend to exacerbate the problem. People are genuinely coming in and out and that exacerbates Mum’s imaginings when they’ve gone as past and present meld. Her delusions and anxieties are not predictable.

She loves company and visitors staying. When they’re there I can tell how happy she is. Trusted visitors who I can ask “How were things really?” report the same. If they pop out (and of course they are encouraged to take breathers!), her anxiety returns and I get a call within about half an hour.

Thing is, she declares she hates anyone staying. So when another private care agency lady came to ask about a live-in to give me some respite when recovering from a medical procedure, Mum went nuts. I understand Mum doesn’t know she needs care and feels it’s a terrible imposition on her to have someone around because she’s fine and why did the care lady think she was so bad, she felt that it ought to be me being there. (In the end my mother-in-law, bless her, stayed with Mum for a week so I didn’t have to refuse my medical treatment; but I can’t do that all the time).

Result was the care agency said that Mum didn’t want care so couldn’t give it. They said that I should be able to reassure Mum over a video call. They also worried about dealing with Mum’s mental health. I know it’s a genuine problem - I wouldn’t want a paid carer to be in a bad position.

Doctor, care agency, memory unit all say that Mum is still very capable and doing well. I know she’s still got a lot of capability. And I do know how bad it can get . I’m not naive. I’ve been through this with Dad already (OK via a brain tumour but he had a very similar trajectory to dementia, but drawn out over 17 painful years).

I have read every website about being a carer that I can find. I’ve done courses. They all give advice on doing the caring better and say “take breaks because it’s important” and “look after yourself”. There are pages of advice on caring for a difficult parent who’s been abusive in the past - it’s all about coping, never delegating or getting help.

I actually have time I could use for myself but can’t plan any of it because I’m always braced for the next emergency. There’s no point planning a break when the whole time you’re as tense as anything and can’t enjoy it. Brace brace brace! That’s how I live. It’s the overwhelming uncertainty of not knowing if there will be an emergency next minute, it’s not being able to commit to my job properly, it’s never being able to go anywhere further than the post-box (forget the office), it’s being unable to finish a conversation with a friend on the phone let alone meet them, it’s not being able to commit to any activities even online, it’s being a terrible wife to a wonderful man and denying him children because I have to be there for Mum.

But this isn’t all about me. I know the main person in this has to be the person needing care. And that is right and proper. But Mum is suffering too from all the effects that come with her ailments.

[1] But is Mum eligible for help? Am I eligible for help? At what point does it become OK to need help?

From talking to care agencies - who I was prepared to pay a lot of money - we are not eligible. (I am really fortunate that paying for care is not the obstacle for me as my late father left Mum enough)

[2] If I am not eligible for help, what should I do?

I know Mum’s secure when I’m around. My husband is a wonderful person but knows that getting her to move in with us would be a nightmare and horror show - so that’s not an option. The remaining course is me leaving and moving in with Mum. I’d lose him, the one person in my life who gives me the courage to face the day. But Mum isn’t coping and nobody professional believes me.

Hi Faz,

firstly, don’t move in with your Mum and sacrifice your marriage.

Has your Mum had support to deal with her grief on losing your Dad?

Since your Mum accepts help from a volunteer taking her out to church and the music therapist too, could you source more of this kind of service for her? Some agencies offer domicilary care that arranges for a paid carer to take someone out and about.

Even though she is self funding, you can request a Needs Assessment for her from social care - this would give you leverage as you could claim, the social worker says you need … Needs assessment | Carers UK

You can also request a Carers Assessment for yourself Carer's assessment | Carers UK

I think you are going to have to set limits on the amount of help and support you give her. For, whilst you are providing all the emotional support no one can see how she isn’t coping, as you are helping her to cope. Also its not sustainable for you.

Is there a warden or similar at the sheltered accommodation? This needs to be the number she is ringing not yours. Ensure it is easy for her to find on her phone. When you are working you need to let her call go to voicemail. Establish a regular time in the evening when you will ring her to establish a new routine.

Others with more experience of dementia, mental health problems and sheltered accommodation will hopefully be along to advise.

Melly1

firstly, don’t move in with your Mum and sacrifice your marriage.

I do know. And I really don’t want to. But the guilt speaks and I read so much about all these people who give up everything because caring is more important. When Dad was very ill and getting up 12 times a night, I had a carer tell me to stay there and sleep at the foot of the bed! I know it’s not reasonable but I guess I’m ground down.

Thank you for your words of support here. It means a lot

Has your Mum had support to deal with her grief on losing your Dad?

Mum wouldn’t see a grief counsellor. She says they want to see her because they think she’s bad. That’s not the dementia, that is Mum. Poor old Mum.

Since your Mum accepts help from a volunteer taking her out to church and the music therapist too, could you source more of this kind of service for her? Some agencies offer domicilary care that arranges for a paid carer to take someone out and about.

Good idea. Thank you.

Needs Assessment […] Carers Assessment

Forms downloaded. Thanks.

I think you are going to have to set limits on the amount of help and support you give her. For, whilst you are providing all the emotional support no one can see how she isn’t coping, as you are helping her to cope. Also its not sustainable for you.

I do know. I’m not very tough when it comes to hearing Mum’s desperate voice and seeing her suffer. I’ve effectively been caring for her in one way or another since I was 6 or 7 (I realise now) and I promised all the way back then to take care of her. But I’m so tired it’s easier to just cave… However, you’re right, of course!!!

Is there a warden or similar at the sheltered accommodation? This needs to be the number she is ringing not yours.

Thanks, yes. I have now arranged a chat with the head warden tomorrow afternoon. We need to work together for a solution that doesn’t mean the warden is just an intermediary for calling me every time (which is where we are).

Melly1

You are a beautiful human being. This means so much, particularly on the second even-more-horribly-rough-day-than-usual in a a row! Thank you.

Dear Faz

I would suggest you contact our helpline for advice on your situation, they can be contacted on our Telephone Helpline number which is 0808 808 7777 available from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org).

with all good wishes
Ingrid

Faz you are doing all you can and that is good enough!! You have right to have your own peaceful life.

Warden input - sheltered housing has it’s limitations and a warden duties are to make referrals and sign post to reliant services. However where there is families and friends this is their first port of call. There needs to a meeting of services and family to discuss the current situation and future needs. Which has already been mentioned a needs assessment.

Does Mum have a emergency call pendant.

This. ^^^

It makes my head explode that so many people are in this position just because they happen to be around for their family. I’m assuming you are an only child Faz, but what would they do if you lived miles away or your mum had no children, or you worked somewhere that you couldn’t answer the phone and drop everything? They keep expecting us to just keep on going, but without the help and support that would be offered if we didn’t exist.

I would definitely echo what has been said before about the assessments and also standing firm that you CANNOT continue like this. Of course the difficulty is that she still has capacity but that doesn’t mean that she always makes the best decisions. Are the Older Person’s Mental Health team involved in her care at all? They might be able to speak to your mum with you to help her to understand that something needs to change and to present the options to her. It’s this (a live in carer that she will soon feel comfortable with) or it’s that (a care home). A social worker should definitely be able to help you to access the right support but you need to be clear and very very firm from the off, that you cannot continue. As important as the cared for person is, the carer is also of ultimate importance. Just like on a plane, a parent needs to put on their mask first, so you need to take care of yourself in order to help your mum.

Sending you love and strength.

Thank you. I will do that.

Thank you. I had a discussion with the warden now. She recommended largely what is being recommended here - care needs assessment and carer assessment. I have requested both these from the council now. I hope the waiting list isn’t too many months.

RE: emergency pendant. She has one but won’t wear it. However, she does have an emergency button on the wall, which I’ve labelled emergency. She did manage to press it once when a resident fell in the corridor outside her flat.

Yes, indeed. It is head-exploding. More head-exploding is that we feel guilty enough (as evidenced by so many posts on this forum) while putting our own lives aside to be told by health and care professionals to do more because it isn’t that bad really and we should be able to cope.

Given what I read about conditions for people who don’t have relatives to fight their corner, I don’t think there is help and support for those poor souls without family though :frowning:

she still has capacity but that doesn’t mean that she always makes the best decisions.

She refuses a live-in carer because she says she’s fine and she doesn’t ask me to anything and why does everyone think she’s bad? So yes, doesn’t always make the best decisions, especially as I think she’d love a live-in: company, activities etc. and me back to popping round for nicer things than crises. But can’t do anything.

Are the Older Person’s Mental Health team involved in her care at all?

Mum was discharged back to the GP. I was told her delusions and mental health wasn’t that bad and families can cope with that. Care agency we tried said her mental health was too bad for her to take her on.

As important as the cared for person is, the carer is also of ultimate importance.

Really appreciate those words. Just as for the 17 years my Dad was ill, it’s the same with Mum now: there are few places in society to talk about these issues freely without being told that we aren’t doing enough, that it isn’t that bad, that we’re putting it on so that we can get rid of problematic relatives. A few years before Dad passed away, he was falling a couple of times a week and had no short term memory, he got up a dozen times a night and nearly fell every time. The social worker told me she’d slept a the foot of her mother’s bed for four years to help stop her falling so I could try something like that. That’s why I’ve been reluctant to speak with social services… but the time has definitely come to try for Mum and see if our new location has any better services!


Thank you so much for your support!