At breaking point...

[echo66]

I didn't know where to post, so I hope this is the right place. I'm not sure what I'm looking for, just a place to offload I guess, where others 'get it'...
Yet I feel like whatever I say just sounds like whinging, others have it far worse than I, and I don't have a right to moan.

Summary - working full time. Caring for Mum who has COPD and was recently diagnosed with dementia. Caring for husband who has fibromyalgia. I'm struggling with depression and anxiety and have recently been diagnosed with MS. I don't have any other family.
Not sure what stage Mums dementia is at, but I think it's been coming on for some time. She's been seen by the Psych at the memory clinic and was prescribed medication. At the moment she still lives in her own home, has a Care agency coming in once a day, but won't let them do anything for her. I call in every day after work and weekends to cook her a hot meal and make sure she takes her tablets. Sort her medication, do her shopping, washing, tidying up etc.
Some days she is washed and dressed, can hold a conversation (even if she can't remember it later!); other days she sits there in her nightclothes, barely aware of her surroundings, doesn't want to eat, can't hold a conversation and just falls asleep.
Mum has a Telecare pendant which she refuses to wear. When she gets distressed or confused, I'm the person she contacts, she simply won't rely on anyone else for help. She'll tell anyone who calls that she's managing just fine. She tells me she can't carry on like this and doesn't know what to do. I point out that the whole idea having people coming to the house to help her is so she can remain independent in her own house (she has a fear of being put 'in a home'), but even that isn't enough to persuade her to accept help and support from anyone else but me.
Social services said they can't force her to accept help because she has capacity. If the person needing care won't accept it, there's nothing they can do (so if Mum won't accept support, I don't get any either).

My anxiety levels are sky high, mood is at rock bottom.
I can't do this any more.

 

[Amethyst59]

Ah, I’m m so sorry to read this. And everything looks worse at night. First of all , I am so glad that you have found Talking Point. Let’s hope this is the start of the change that you need. Our situations are different, but in the morning I am sure that someone in your situation will reply to your post. In the mean time, my understanding is that for as long as you keep picking up the pieces, social services will let you. And it sounds as if you are about at the end of your resources...so what happens? You stop looking after her because you hav e a breakdown and then....? Someone else will have to step in. So you take steps to get that ‘someone else’ before your own health crumbles completely.
I’m not awake enough to give more constructive help, but I will check your thread tomorrow to make sure the right people see it.
Don’t worry....the cavalry is on the way! Try and get some sleep...I might even take my own advice and try and get some myself.

 

[Bunpoots]

Reading between the lines, I suspect that your mum is angling for you to take her to live with you, or for you to live with her. Obviously this would be impossible.

What would your old mum have wanted for you? The one without dementia? I can't imagine she'd have wanted you to destroy your own health and sanity to look after her.

You need to step back for the sake of your own health, and for your husband, and let the professionals take over. If you pick up the pieces for your mum social services will allow you to do so. Contact them and tell them that your mum is "a vulnerable adult at risk" and they have "a duty of care" - these seem to be the key words - and that you have MS and carer breakdown and can no longer support your mum to live in her own home.
Decide exactly what you can do, if you're happy to do her shopping for example, and let social services sort out the rest of her care needs.

Sometimes you have to let a crisis happen to get the support your mum needs in place. Your mum thinks she's coping because you are coping for her. You know if you carry on you will breakdown then a crisis will happen for all of you - not just your mum.

You have to step back and let social services do their job. You're not letting your mum down, just being realistic.

 

[canary]

So you are working full-time, are running your own household, looking after a husband with health problems and have serious health problems of your own, yet you are still the main carer for your mum and are running around doing things for her and posting on here in the wee small hours of the morning (so you are not getting much sleep either)!!!!!

Good grief woman, thats not whingeing, thats a serious concern!

Unfortunately, it is pretty common for the PWD (person with dementia) to rely entirely on one person as that person is familiar and becomes their "security blanket" in the midst of all their confusion. I am not the best person to advise you as I never could get mum to accept outside help. She wanted me to give up my job, leave my husband (who was just beginning to show symptoms of dementia himself) and go and live with her so that I could look after her . She also tried to make me promise that I would never "put her in a home". In fact I ended up with no other option than a care home, but once she had settled she thrived and was content, so dont listen too hard to your mums fears of going into a care home.

 

[Fullticket]

I support Canary in this. If a home is the answer then get looking. Unfortunately no-one will step in to help until there is an emergency and if the emergency is you breaking down then it will be too late to do what is best for her and for you. Your mum will resist, of course she will - who likes change? She may resist and be unhappy in a home for a brief period but, ultimately, she will be surrounded by things going on, people to talk to, care being given, food prepared, medications managed. She will settle and be content. Truthfully!
Then you will be less stressed, visits will be pleasurable and not focused on 'has she eaten, has she had a fall?' and hopefully your MS will settle down. You being stressed is not the answer - we can't do it all and that's what the professionals are there for.

 

[echo66]

Thank you all for your replies.

Tempted as I am to contact Social Services and just say "I'm not coping, you need to step in", going on previous experiences with them, I don't have any confidence in them that this will happen.

When I'm not so exhausted and able to think straight, I might be able to make a sensible decision. Right now getting through one day to the next is as much as I can do.

 

[Amethyst59]

I played that game too...couldn’t see how contacting SS would help, couldn’t see the point of going to the GP, all that was needed was more of ME.
I went to the GP to please my sister. He made a call. While at the pharmacy collecting meds, she spoke to me, then she made a call. Two days later, I had an appointment for an assessment, an offer of a day care place, and from all our asking around, I have just interviewed a carer to help at home.
A lot of my help has come through a referral the pharmacist made to a carers support group.
Give it a go. It can’t make things worse.

 

[Jo Sutton]

@echo66 I was exactly where you are now and on the point of breaking, except that I had managed to fill-in a self-assessment for SS, but still hadn't heard anything.

I had an email acknowledging my application, which had an "in an emergency, please call ..." number on it. I called it and sobbed on the phone - I was just at the end of my energy.

The next day, I had the START team come round to do an assessment, and Mum got morning carer visits from then on, which relieved the pressure on me immensely.

Since then, I've been looking for what support is available, and there is an amazing range out there. If you have no faith in SS, then I suggest you contact your local Carers' Centre. They are really amazing at taking a holistic view and putting you in touch with what will best help you. They are totally on your side, know what it's really like and they really do smooth the way and get things in motion.

Also, try Admiral Nurses and your local Alzheimers Society. They will also know of everything out there that might help you and will help broker what you need. And call the national Alzheimers support line. It's great to talk in person to someone who just gets it.

Please do reach out for help. SS aren't the only ones who can do anything.

Hugs

Jo xx

 

[Bunty123]

Hi
I can empathise entirely with you and having read the thread it seems we shouldn't cover our exhaustion but say loudly 'I can't do this anymore' we will see what we will see eh!
Just remember you are not alone x

 

[echo66]

It's been 5 months since I last posted here; I'd like to say that things have improved dramatically and that Mum is thriving and I'm coping a lot better - unfortunately I can't.

Mum has not long come out of hospital after being in there for a month, she now has the Reablement Team coming in 4 times a day, which I thought was supposed to help her and also take some of the stress off me....
For months the medical profession have been saying that Mum has capacity; now according to Social Services who arranged for an assessment to be carried out, she no longer has the capacity to make decisions in her best interest regarding her healthcare.... so Social Services have stepped in and sent the Reablement Team in to see Mum 4 times a day... Why then is it that twice in the last 2 weeks I've gone into Mums after work, bearing in mind she's had 3 calls by this time, only to find she hasn't taken her morning medication (despite me texting every day to remind her) and not had anything to eat (until I cooked her some dinner)..... er, isn't that what all these calls are for, to ensure she's taking her medication and eating...? How can they be doing their job yet miss something so basic!?
Unfortunately Mum doesn't remember whether she's seen anyone, whether she's eaten, taken her meds. She doesn't even always acknowledge my texts, but stupidly I thought the RT / Carers would alert me if anything was amis... it seems not.

Now I have to do battle again with the ****** social worker before Mum goes downhill any further and ends up back in hospital; although maybe that wouldn't be a bad thing, at least she was looked after in there.

On a slightly different note - does anyone know if the Social Services have an obligation to find a care home that will take Mum, because they are saying it's my responsibility; I just don't feel able to deal with this as well at the moment, but they seem reluctant to offer any help. I asked what they did in cases where there wasn't any family, they said an advocate would be appointed, but that wasn't necessary in this case because I am there. They don't seem to acknowledge (or care) about the detrimental effect it's having on my mental health.

 

[kindred]

It's been 5 months since I last posted here; I'd like to say that things have improved dramatically and that Mum is thriving and I'm coping a lot better - unfortunately I can't.

Mum has not long come out of hospital after being in there for a month, she now has the Reablement Team coming in 4 times a day, which I thought was supposed to help her and also take some of the stress off me....
For months the medical profession have been saying that Mum has capacity; now according to Social Services who arranged for an assessment to be carried out, she no longer has the capacity to make decisions in her best interest regarding her healthcare.... so Social Services have stepped in and sent the Reablement Team in to see Mum 4 times a day... Why then is it that twice in the last 2 weeks I've gone into Mums after work, bearing in mind she's had 3 calls by this time, only to find she hasn't taken her morning medication (despite me texting every day to remind her) and not had anything to eat (until I cooked her some dinner)..... er, isn't that what all these calls are for, to ensure she's taking her medication and eating...? How can they be doing their job yet miss something so basic!?
Unfortunately Mum doesn't remember whether she's seen anyone, whether she's eaten, taken her meds. She doesn't even always acknowledge my texts, but stupidly I thought the RT / Carers would alert me if anything was amis... it seems not.

Now I have to do battle again with the ****** social worker before Mum goes downhill any further and ends up back in hospital; although maybe that wouldn't be a bad thing, at least she was looked after in there.

On a slightly different note - does anyone know if the Social Services have an obligation to find a care home that will take Mum, because they are saying it's my responsibility; I just don't feel able to deal with this as well at the moment, but they seem reluctant to offer any help. I asked what they did in cases where there wasn't any family, they said an advocate would be appointed, but that wasn't necessary in this case because I am there. They don't seem to acknowledge (or care) about the detrimental effect it's having on my mental health.

My dear, all sympathy. I'm replying about your last question. Would your mother be self-funding?
This is my experience: help with finding a care home was the one thing I badly wanted, like you it was having an awful effect on my mental health. It was the last straw. Also, I would be ringing round with my OH bellowing in my ear as he always did when I was on the phone. I would be self funding and they said they could not help me because to do so would be conferring commercial advantage on the home concerned. I had no energy and no courage left.
Please try telling them you have no energy to do this and remember, they have a list of the current vacancies. If you are not self-funding then they normally tell you the vacancies so you can check out a home for your mum.
When the inevitable crash came, Oh in A and E and then hospitalised, the social worker there immediately signed a best interest residential care statement and found me the lovely care home place I now have. She said things are different once you are inside the system.
Ask if they have a list of current vacancies so you can check them out, this at least narrows the search. All good luck to you, you are doing so well by your mum. Thank you so very much for posting.

 

[echo66]

Yes Mum would be self funding (well until the money ran out).

It's scary how Social Services will just expect family to cope whilst giving as little support as they can get away with.

Mum was in hospital for all of April and has now been home for just over a month, during which time she has been under the care of the Reablement Team. Mum was given a MH assessment whilst in hospital and deemed not to have capacity for making decisions about her health and welfare. Social worker agreed that she could go home providing she had 4 calls a day from Reablement Team with a view to longer term support being arranged afterwards. This happened for a couple of weeks, then one day I go in to find that because she isn't "cooperating", they have cut the number of calls to once a day. They apparently spoke to Mum about it - she readily agreed of course! But how can they say she doesn't have capacity to make health & welfare decisions and then take her word without consulting me?

About 5 times in the past month I have arrived at Mums after work to find that she hasn't had anything to eat or drink, and not taken her morning medication (despite me texting to prompt her every day); the RT are supposed to be checking on these things and appear to be taking her word for it regarding the medication because they have logged several times that morning meds have been taken and I arrive in the evening to find they haven't.

I am now close to breaking point. My husband says I should make a formal complaint about her so called 'care'... I know he's probably right but it's another battle I don't think I can win, in my experience with this Health Board, it will just be swept away as of no consequence or turned around and made to be my fault (Social worker has already inferred its my responsibility) even though she knows I am working full time, have health issues myself and have a husband with long term care needs.
Social services seem to want to have it all ways. Take control when it suits them (as in the Capacity Assessment) and when Mum becomes too non-compliant, push the responsibility back on to me.
They keep using the excuse that she can't be forced to accept care (in order to justify their lack of it), but I fear they'd be quick enough to section her if they seemed it necessary, without any consultation on my part.

 

[Rosettastone57]

Yes Mum would be self funding (well until the money ran out).

It's scary how Social Services will just expect family to cope whilst giving as little support as they can get away with.

Mum was in hospital for all of April and has now been home for just over a month, during which time she has been under the care of the Reablement Team. Mum was given a MH assessment whilst in hospital and deemed not to have capacity for making decisions about her health and welfare. Social worker agreed that she could go home providing she had 4 calls a day from Reablement Team with a view to longer term support being arranged afterwards. This happened for a couple of weeks, then one day I go in to find that because she isn't "cooperating", they have cut the number of calls to once a day. They apparently spoke to Mum about it - she readily agreed of course! But how can they say she doesn't have capacity to make health & welfare decisions and then take her word without consulting me?

About 5 times in the past month I have arrived at Mums after work to find that she hasn't had anything to eat or drink, and not taken her morning medication (despite me texting to prompt her every day); the RT are supposed to be checking on these things and appear to be taking her word for it regarding the medication because they have logged several times that morning meds have been taken and I arrive in the evening to find they haven't.

I am now close to breaking point. My husband says I should make a formal complaint about her so called 'care'... I know he's probably right but it's another battle I don't think I can win, in my experience with this Health Board, it will just be swept away as of no consequence or turned around and made to be my fault (Social worker has already inferred its my responsibility) even though she knows I am working full time, have health issues myself and have a husband with long term care needs.
Social services seem to want to have it all ways. Take control when it suits them (as in the Capacity Assessment) and when Mum becomes too non-compliant, push the responsibility back on to me.
They keep using the excuse that she can't be forced to accept care (in order to justify their lack of it), but I fear they'd be quick enough to section her if they seemed it necessary, without any consultation on my part.

I have every empathy for you this sounds very familiar to me regarding my mother-in-law. She had a fall in 2013 and had the reablement unit out for a period time for 3 calls a day. Because of her pre-existing mental health condition prior to the dementia diagnosis she refused to co-operate with the team. Eventually the calls were cut and they ceased all together after about 3 weeks. We already had power of attorney for finance in place so we just simply organised private carers anyway the dementia diagnosis followed on about 18 months later and we were glad at that point that the carers were in place.
If your mother is self funding you could simply organise things yourself you don't have to necessarily wait for social services. The agency that my mother-in-law has had three calls a day they prepare all her food prompting medication and make sure she's generally ok.
Social Services are probably right that your mother can't be forced to accept care. We organised carers anyway although we had no social services involvement at that point. We decided that my mother in laws needs were more important than what she wanted. Of course my mother-in-law was rude abusive and aggressive but we just ignored her and stood our ground.

 

[canary]

At the end of the reablement period there should be a Best Interest meeting that you should be invited to..This is the point when it should be decided what would be in your mums best interest and this is most definitely the time to point out that having 4 carers a day is just not working because she is not eating and taking medication and she is not compliant. This is putting her "at risk" of self neglect.

Unfortunately, if you are self-funding SS does tend to just let you get on with it.

 

[daveyshadow]

So glad I found this thread, we are in the same place with a MIL who is self funding and is constantly anxious - food and heating for us. OH has mild copd and I work full time. GP surgery expect us to drop everything to get her to appts. Phone call at 4.30 on a Friday afternoon, could we just pop in and collect a bottle for a urine sample and drop it back - not open on at the weekend- and now looking at her online care notes for this morning, the GP just turned up to see at her home with no notice. carer left them chatting so we have no idea of why they came, what was discussed and if we need to be aware of anything, so frustrated. And while I am writing this yet another call from carer's as she is anxious again about her heating. If we try to say it is all ok she gets very aggressive with us and demands we go round and check.

RANT over for now. I know this post has not helped directly, but I hope at least it has helped to show that there are so many families in crises like this

 

[echo66]

I appreciate all previous replies to my original posts, sorry I've not been here for some time but it's been a hell of a few months.
Mum was admitted to hospital again at the start of July, she remained there until October when she was discharged to a Nursing Home - after Doctor/Social Services did MH Capacity assessment - decided that she couldn't make decisions in her own best interest regarding health and welfare.

During this past month, her physical and mental health has deteriorated significantly. She refuses to leave her room even for meals and rarely accepts help with personal care; and while the care staff seem ok and check on her every couple of hours, I'm wondering if anybody actually spends any length of time with her or is it just a case of popping head round door, asking if anything wanted - she says no - and is left on her own again...?

I have requested a meeting with the care home Manager to discuss my concerns, as because Mum isn't able to remember anything, I feel like I'm completely out of the loop with regards to what is going on with her. I don't know what medication she is on, whether she has seen a doctor, are her oxygen levels and BP being regularly checked.... unless I specifically ask, no one volunteers the information.

I thought her being in a Nursing home would take some of the pressure off, but so far it only seems to be adding to it, apart from the fact that I know where she is and is reasonably (safe?), even though she is supposedly under 24 hour care, Mum has sustained 2 separate injuries in the last 3 weeks which cannot be explained (she doesn't remember what happened so can't tell me).

I feel like I'm in a living nightmare.

 

[Helly68]

Echo -I would request a Best Interests meeting with the Home Manager, social services and the one we had also included community matron. This should discuss how she is doing, whether there are any concerns and should give you a chance to ask about injuries. It all takes time, but we found it very helpful when Mummy had a sudden downturn and became a greater risk for falling.

 

[echo66]

Echo -I would request a Best Interests meeting with the Home Manager, social services and the one we had also included community matron. This should discuss how she is doing, whether there are any concerns and should give you a chance to ask about injuries. It all takes time, but we found it very helpful when Mummy had a sudden downturn and became a greater risk for falling.

Since Mum was discharged to the Nursing Home, Social Services have been conspicuous by their absence, is this usual? I assume she is still regarded as a vulnerable adult, so why aren't social services involved? I have spoken with the Care Home manager and her deputy, they have gone to great pains to reassure me that everything is being done by the book and have said I can take a look at the MARS charts and the handover notes, her medication list etc anytime.

Today I went to visit and she was weighed while I was there. She has lost another half stone since discharge from hospital. The past 2 days she has barely been able to stay awake, can't hold a conversation with me and is just so exhausted, probably from malnourishment.

I know they can't force her to eat and drink, but since discharge from hospital the nutritional drinks (ensure) seem to have stopped. I have suggested to the care staff they contact the GP and request that these be started again.

I feel as though I should be doing more, but not sure exactly what? I'm not accusing the care home of any wrong doing or negligence, but I don't feel as though Mum is being looked after as well as she could be. It seems all too easy to use the line 'we can't force her' whenever she won't cooperate with whatever assistance they are trying to give.

 

[canary]

Hello again @echo66
It sounds like your mum has entered the severe stage of dementia now. Not moving much, sleeping a lot, having very little appetite and losing weight is typical of this stage. I think that stating the ensure again would be a good idea.

BTW - once someone moves into a care/nursing home SS do not get involved anymore, there is nothing sinister about it.

 

[echo66]

Thank you for your reassurances @canary.

Mum is now down to five and a half stone in weight, she is back on the ensure nutritional drinks and I understand GP has just started prescribing vitamins B6 and Thiamine.

There are more days now where she stays in her nightclothes and doesn't bother getting dressed. I don't know if this is because it is all just too much effort and exhausting or because she simply doesn't care anymore. She still refuses help with personal care so doesn't actually wash much either I suspect. I often have to persuade her to change her nightshirt and dressing down, socks etc so I can take them and give them a wash. Her hair needs washing again, but the last time the carers took her to the shower room, she shouted the place down; so I'm not pushing the point at the moment.

Mum still asks every couple of days, why can't she go home? I try to either distract or just not answer as I've explained it to her so many times. She understands at the time I explain it to her and accepts that she wouldn't be able to cope at home, but of course doesn't retain the information. Dementia certainly is 'groundhog day'..!