How to tell the person you care for that you cannot carry on…

Hi, I have posted on and off over the last couple of years about caring for my 95 year old ( 96 in August) mother in law and how challenging I find this.
She has health anxiety and we find ourselves attending to every ache and pain she has - invariably, these are nothing serious and life goes on.
We do most things for her now and she has carers once a day , which she says are a waste of time. They could well be but were put in place as she would call constantly to say she couldn’t make a cup of tea and hadn’t eaten and we would go around to her daily more than two or three times.
She is less able to do things now and doesn’t recognise that she is only managing because we do her meals, washing, meds, appointments, shopping- you name it. However, I really don’t think she recognises this. She can be quite domineering and wants things done immediately, to the point she will say she will do it, knowing she could fall over or something, so in the end I usually go around and do the requested task.
I have now reached the point where having been diagnosed with a heart condition I am not willing to be as available as I have been. She is aware of both my own and her sons ( my husband) health issues, but she doesn’t seem to take it in or doesn’t feel it’s important as she continues to make ever more demands.
It is difficult to ignore her due to her age, I’m guessing at 95 anything could happen and given her extensive knowledge of health issues, she always knows what to say.
She can be ok and quite pleasant, but her increasing neediness, telephone calls and declining memory are becoming a real problem.
I personally think she wants company and would probably thrive in a care home, but obviously she only wants us.
We have had no break for many years and the two overnight stays we planned were called off due to the upset it caused. She blames our dogs for us not having holidays!! They’re my only pleasure!
Today though, I feel like I’ve hit the wall and can’t go on.
We have seen her every day this week, and yesterday I spent for hours with her helping sort through old photos and cooked her a nice meal.
I expected to have a therapeutic housework day to day but have had four phone calls from her about her spilling some water, she couldn’t find her change purse, she found her change purse and most recently, she now feels “ really funny” but “doesn’t expect me to go around” to her ( read: I need you to come round).
I feel like I can’t breath with stress and would love to know if anyone has experienced similar things and how they broached the subject of a care home.
She would be self funding and there is a POA in place as we do her bills and banking etc.
Please know that I am fully aware that many people on this forum have extremely difficult circumstances to deal and my think what I am raising make me a bit of a “lightweight.” However, the stress of being on call for the past eight years has taken its toll.

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Jane
I and I’m sure others certainly don’t think your caring is lightweight!!
I’m so sorry you have been diagnosed with a heart condition. That is a warning to look after yourself. You will have to be firm, and explain you can no longer keep going to her. Could you tell her she has to go to a place for respite for all of your sakes. No choice!
Or the very least arrange for more carers to go to her. Then switch your phone off or have the answering system on. Your own and your husband’s health will worsen with the worry.
You deserve some peace together. To do what you would like to do. Harsh to say but before it’s too late

Many thanks for your response, it is greatly appreciated .
It’s a very difficult issue to raise, her lack of insight into her situation doesn’t help, she often says well, “ I do everything I can so you don’t have to.”
She really doesn’t see that she doesn’t do anything at all.
I just can’t shake the feeling that I should be able to cope as it’s not like we live with her ( about a six minute drive away).
However, I think it’s the constant “ expectation “ and not knowing what the day will bring.
It feels quite overwhelming at the moment.

Make sure that you are getting me time. It might be time to look at what the care industry can do, but try to ensure the actual provider in question is a good one. There are loads of care companies that are out there. Do your own research carefully though. You don’t want to have any issues down the road. Regarding having me time make a list of ways in order to achieve this. Keep a copy in a accessible location at home in addition to refer back to. Best wishes. You are in my prayers.

Hi Jane,
being on call 24/7 and not being able to relax or switch off knowing that any minute you could be summoned IS exhausting - even if your MIL only lives 6 minutes away.

Pet is right, your heart condition and your husband’s health conditions need to be taken seriously and on-call caring will take its toll.

I think you both need to have firm talks with MIL. Its time for you all to have a holiday - her in respite care and you and your husband need to get away. This would be a good way for her to see what its like to have people around her 24/7 for company. Important to pick the care home wisely - so that its a positive experience for her. My Granny used to stay in care home when my Auntie and Uncle went to visit their children and grandchildren. She got to a point where she decided she needed to move in.

If she downright refuses to go into respite care (and is considered to have capacity,) then you mustn’t back down and need to tell her you are still going and it will be a case of increasing the care visits she has instead. I suspect she might then agree to go into the care home .

I realise these conversations won’t be easy - but tell her if you both become ill as you haven’t had a break - then she’ll have no option but to be in a care home anyway …

Jane, nothing will change unless YOU force it to change I’m afraid.
You have every right to tell Social Services you “will not be available to care between April 30th and May 30th” or whatever date you choose, and ask them to arrange alternative care.

Otherwise, you are a virtual prisoner until death!

Jane, my F-I-L was a stubborn old B and refused to consider a Care Home even when he was really struggling. Graham managed to persuade him to ‘take a holiday’ for three weeks…in a care home…while he sorted our a Care Plan for him at his flat. After 2 1/2 weeks he visited to say things were in place and he could go home in a few days…

The reaction was ‘why do I have to go back there? Why cant I stay here. I like it here. There are people who will talk to me. I dont want to be alone’… Problem solved. It might be worth considering Melly’s suggestion of you getting a holiday/break and M-I-L has a holiday too. You might find that she loves have people around to chat to all day and she might want to stay put.

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Hello all, many thanks for taking the time to reply, as I said I am a regular reader of the forum so feel like I know a bit about your situations and know that your words come from a place of experience and kindness.
I was reluctant to post at first because my situation doesn’t seem so bad as I don’t actually live with my MIL, but the impact of the situation permeates everything in our life.
I also have a son ( aged 36 now) who lives with us and has a diagnosis of Aspergers, a specific learning difficulty and Tourette’s. That in itself is challenging but it is manageable. Of course, he fits no one’s criteria for a service so I help him with his life as best I can, he is articulate and bright in some respects, which I think mask’s how vulnerable he is.
However, dealing with my MIL is on another level due to her lack of awareness of what we actually do and the level of her demands.
I do understand that only we can change things, but I just can’t imagine her reaction to us raising the subject of a care home, perhaps more carers going in is the best first step - but I don’t think this will solve the problem of her wanting someone there all the time.
Thanks again for replying, it is comforting to know people do take the time to respond even though they too, have difficult circumstances.
I enjoy the forum, the photos and take heart that it is possible to be positive when the going is tough.

I care for my little girl as well. She now has a moderate food allergy to eggs. It is hard sometimes but there is always hope after all. I have also learned to keep a food diary and to double check the food labels in order to ensure what I buy for her does not contain it. Good luck. You can surely do this. Maybe secretly do some research in addition on care homes in case. Make some brief summary notes on care homes. Visit a few in your area to assess what it is like there. Look at the information on their website on top of that. If you can take a look at the toilets to determine if the home is a good one. Call in the morning. Discuss your family members.

Hi Jane,

I have been a carer since 2016 for my dad and also for my MiL for a brief period of 9 months last year until her passing. It’s hard work both physically and mentally and I cannot express enough that whilst our work is important for the person we care for and for society in general because if we didn’t exist social care would collapse, the person we need to care for as number 1 priority is ourselves, because if we are not healthy, we can’t help others stay healthy.

My suggestions would be extra social care, possible respite care for your MiL which will give you a break, rather than a care home maybe look into the option of assisted living or retirement complex if there is anything in your area, or home adaptions to help your MiL keep independence.
Age UK have a fair amount of information on their website which may help you look into the various options in more detail.

You need to be firm with her and tell her you need a break sooner rather than later because you are reaching burnout and you need to rest because of your heart condition, in the short term try and arrange extra calls from social care, maybe meal deliveries or residential respite care and you book something for you and your hubby to get away and just relax (maybe somewhere remote with bad mobile phone service and leave the hotel number with respite for emergencies)

I can’t think of anything else for now but if I do I will pop it on here.

Good Luck

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Many thanks for your response.
I’m at a very low ebb at the moment just trying to see a way through, but will hopefully get there at some point.

Hi Jane,
You have my sympathy. Caring for elderly relatives is not an easy thing but it’s made even harder when they don’t recognise how much you are struggling. I helped my mother care for my father for years before he passed in 2017. It sounds like he was quite similar to your mother in law - there was a never ending string of demands for things he needed doing right then and there, carers were put in place only for him to tell them not to bother coming because they couldn’t come at the times he wanted and the visits he did get were often much shorter than intended as he would insist the carers didn’t need to do things they were being paid for because he could just get me to do it. If ever I tried to refuse to do something or say I would do it later I was made to feel guilty and then reminded every five minutes until it was done. He initially refused point blank to even consider residential care or respite care but finally changed his mind after having multiple ambulances out to him over the course of a few days and we got 6 weeks of emergency respite. I honestly slept better for those 6 weeks than I had in years. Sadly, despite him realising during his respite stint that residential care was the best option for him, social services wouldn’t even consider long term care as they said he wasn’t old enough and could live another 2+ years and they weren’t willing to commit to such long term funding. He didn’t even live 2 years after that and even now I am so angry that he was robbed of his dignity in those final years and that we were put in a position where our lasting memory of him is tainted by all the hurt we felt in his final years. Now my mums health and mobility is going downhill the same way dads did and I can see history repeating itself. The only saving grace is that mum at least knows what it’s like on the other side and tries to be mindful of how much she is asking of me.

My suggestion would be to start off small. Speak to MIL about respite care, point out that it’s only for a week or two, maybe even try to spin it as a holiday for her. With any luck she will enjoy it so much she won’t be too reluctant to make it a more long term thing. Even if she hates it, at least it gets you a break to recharge and a chance to take a holiday.

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Jane, it’s like being in a “straight jacket” isn’t it. As soon as you even think about doing something for yourself, something happens, and in the end, you give up even thinking about it any more. You have my sympathy, my son was brain damaged, for the first 16 years of his life the only child free days were when I had a hysterectomy!
Please ask your GP to recommend a private counsellor. It helped me hugely.

Hi Jane, I am in the same situation and like you I appreciate that I am “lucky” in that my role as a carer can seem “easy”. My Mum is 92 and was widowed 12 years ago, since that time I have been looking after her (despite not being the only child), taking her shopping, looking after her bungalow and garden, coping with her physical and mental frailty and running her life. I worked full time in a demanding job and gradually the needs of Mum have taken over mine and my husband’s life. 5 years ago Mum moved to sheltered accommodation 2 mins from where I live with the hope this would help her but it had the opposite effect, she has become even more dependent on me for everything in her life and like you can ring me a number of times a day. I also live with my answerphone on my home phone, she will ring my mobile and I have learnt to say “I am not at home at the moment, can I call her when I back” even if I am home so that I am not responding straight away.
Over the past 5 years I have coped with Mum having a lot of health issues as well as my husband having falls and my own health issues, Mum is very reluctant to move into a home and if this is broached with her she will accuse me of wanting to get rid of her as she has ruined my life and all I want is to get her into a home, or I don’t love her anymore. In 2021 I finished work as I could not cope with the demands of Mum and my role, plus working as a key worked during Covid, this decision has been better for my health but left me in a really difficult financial position.

I love my Mum very much, but I know that this cannot continue as my husband is now 75 and if I want some time with him, I cannot be looking after Mum. I have spoken to my brother (he didn’t cope when Dad was poorly and passed) and asked him to come and stay for a couple of days so he could see exactly what looking after Mum required. I have told him I will continue to do what I do (shopping, cooking, washing, finances, all things medical as well as act as a hands-on carer 5 out of 7 days plus 3 nights a week as her overnight carer) until the end of May. After that I am stepping back, between now and then we need to look at some homes as well as see if I can get 24-hour care in place. Mum no longer has the option of making her own decision as like your MIL she is not able to cope without full time support.

By making that decision for myself I feel I am now starting to take back some control in my own life and have slept better and feel I can now start to think about what my husband and I need to do (downsize, have a few nights away, look after my own health).

Thank you for reading and I hope you find the way to deal with this and remember it is not you making the decision it is your MIL failing health that is your priority.

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Thank you all for your responses.
Please bear with me for my reply, I feel I need to but it’s sort of just “pouring out” so maybe a bit disjointed .”
BB, you’re right, it is like a straight jacket!
I was looking back on the last thirty years and I’ve literally spent it caring for three children ( fair enough!!), but one of whom has Aspergers syndrome and Tourette’s and is extremely difficult in terms of his behaviour.
However, we accommodated ourselves to that with no other support.
It is the last twelve years that has been the most difficult because of the behaviour of my MIL.
She is very needy and manipulative. If she wants anything it is preceded by her saying she is ill- something she has done all her life. I’m assuming it’s a learned behaviour from childhood as she has always done it.
I have told her on numerous occasions that she doesn’t have to do that but it doesn’t stop it, but it clouds the situation when she really is unwell.
Her doctor feels she has health anxiety, but that doesn’t help us.
I feel that my life has gone from enjoying a really challenging work environment ( which like you Jill, I had to leave early because of the stress of caring factors- and I subsequently lost a lot of my pension) to one where I am living the life of a ninety five year old!
I’m quite self aware and recognise that I need to be around positive people and situations if I am to get through life, but this has been denied me for some time due to my situation. I feel all I deal with are her health appointments and non stop moaning about how my MIL would love to go on holiday, shopping etc but now cannot.
I reminded her that we do go out together ( in warmer weather or she gets a chill!), she comes here every Sunday and once a month we go shopping or the garden centre, plus we see her every day. This is not enough for her though…
She literally seems to get angry if we go out without her.
I always thought that I was good at problem solving, but I feel like I don’t know where to start with this.
For 95, she is physically well. I’m not sure whether some element of dementia is setting in as she is very repetitive, cannot work things like her phone and tv remote ( on and off) and seems obsessed with cars parking outside ( around which she will make elaborate stories as to why they’re there) and going to the loo! Yesterday the carers had hidden her egg cups!
However, she has capacity and steadfastly refuses to even talk about a care home, she will cry and say please stop saying this, ( hence we have only ever raised it twice, so where the “keep on saying this” comes from, I don’t know).
She just about puts up with the carers, but accepts them more now because she has someone new to talk to about her health and gets them ringing us to make sure we know. I must admit, this make me angry. She will often say the carer says you’ve ( me) got to do this or that etc…. I fume as we hired them to take the pressure off.
I also get unreasonably annoyed at neighbours who say how marvellous it is that she is 96 in August, I feel like I could scream as she tells them how she manages everything ( whilst in the background it’s me and her son ( her only child).
I know I’ve reached “ranting” stage now so I’ll stop.
I also recognise that some people find it rewarding caring for an older relative and may think I’m being harsh; but it’s how I feel.
All I am wanting is to see my grandson once a fortnight and to visit my son in York for an overnight two or three times a year. But the hysterics make this , not impossible, but extremely difficult to do.
In the end we don’t bother….I now just feel scarily flat, just going through each day with nothing to look forward to.
BB, I did a CBT course but don’t think it really addressed the unrelenting nature of being a carer.

Jill, how did the sheltered accommodation make your mum worse?

Also, having said she is physically well, I mean she has no ailments, but is frail.

Crikey Jane, your MIL is practically joined at the hip to you. Sounds like she has totally taken over your lives! She sees you every day at least once, visits every Sunday, has an outing (if she deems the weather ok) every month, rings constantly with problems, gets the paid carers to badger you too.

No wonder you feel as you do.

You should definitely be able to visit your Grandson and son as much as you would look like. I think I’d only tell her about these visits the night before or just as you are setting off eg We are off to see X now, but Y paid carer will be popping in today if you need anything. If you feel poorly get her to ring the GP or 111. Then switch phone calls to divert to voicemail or whatever.

I realise setting boundaries is really difficult, but seems your only option.

One more thing -you said you hire carers. Does you MIL pay for them?

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Thanks for your reply Melly1.
Seeing it laid out like that is quite striking, I think I’m at the point where I “can’t see the wood for the trees “ we just go from day to day responding.
I think her involvement with carers is the most annoying as I thought they would be used to this sort of thing, but seem to call us to cover themselves.
Yes, she does pay from her AA and various pensions.

….and what’s more annoying, is when I say the carer called she denies telling them anything , saying they asked her about ( whatever health ailment) -usually something they could never have known about, and advised her to make sure I know.
Last week she had four Covid tests by various carers who she had told she had woken up sneezing! Of course they were all negative, but until the test is done she will sit in silence fretting.
It’s dreadful.