I am slowly but surely going insane

Hi there
I just joined the site as I am at the end of my tether.

I am the sole full time carer for my mother, she’s 76 and had a stroke roughly 15 years ago.
I’m 48 years old and now the only son. (I live in her house)… well in reality it is now my house legally (but in my mind it’s still hers)

my father had been her carer for 14 of those years until he passed away. (in reality I was the sole carer for both for the last 2 or so years of his life) he was a stubborn man and just would not admit that he couldn’t cope

about 5 years ago I had to put my foot down, so I sold my flat and moved back to the family home because it was becoming far too much for my elderly father to cope with

January 1st 2017, my brother died (only 50 years old, my brother had been wonderful in helping out with mum and he would give you the shirt off his back), April 2017 my father died. then to top it all off my only (remaining) friend in the world (my dog) died 6 months later.
I’ve not even had time to grieve.

so I was left in the position of being the only person who could care for mum. (nobody from social work even asked if i wanted to do it, it was just assumed that I would as I was already living in her house by that time.)
I got zero training or direction and was basically just left to get on with it.

after dad died I gave up my job (which I really liked) to care for mum
I have zero life, zero money of my own (unless you count the pitiful £64 a week carers money.) if you total it up I do about 96 hours a week. I’ve paid taxes my entire adult life for this pleasure?

thankfully mum and dad had saved well for their later lives so there’s plenty to care for mum.

mum is paralyzed down her left side and cannot do anything for herself, she cannot even get out of her chair.

we have carers who come in 4 times a day to deal with getting her washed and changed (for obvious reasons mum doesn’t want me doing that)

they get her dressed and out of bed in the morning and again at night getting her ready for bed.
I then do the lifting to transfer her from her chair to her wheelchair and then into bed.
(we have a hoist but it really needs 2 people to operate so I am left using a manual stand aid)
I have severe back problems now because of this (but I struggle on)

mum usually wakens up most mornings at 6am (I know because she makes sure to tell me) I let her lie there until I get up at 8am to give her meds (I need at least some sleep) she goes to bed at 10:30pm
once mum is in bed is the only real free time I get so I end up sitting way later than I should and wake up next day exhausted

I do all the cooking, all the cleaning, the shopping, all the laundry, the ironing, the financials, collect her meds, dispense her meds ,arrange all her appointments. basically i do everything.

(I do have power of attorney to enable me to deal with her bank etc)

all she does all day is sit and watch the same programs on tv day in day out, I can’t even properly clean the house because she complains that she can’t hear the TV when the hoover is on. (so i have taken to giving the place a quick run over at 10:30pm which isn’t ideal but it is the only time i can do it without her losing the plot)

I’ve tried many things to get her away from tv… buy her books, bought her a tablet, tried to get her into some simple hobbies she could do to at least keep her brain occupied (crossword books and the like) it lasts a day at most then she’s back to her normal.

I cannot even open my mouth when she’s watching something or I get stern looks and tuts and eye rolls and the volume turned up.
(I’m supposedly just meant to be seen but not heard)
she has absolutely zero patience and barely lets the words leave her mouth before asking me again.

the carers are supposed to come in at 8pm at night and every single night she starts getting nervous at about 7pm “oh no they are not coming” she is a nervous wreck (I mean shaking and hyperventilating at the slightest triviality) even tho they have never missed a visit in 15 years.

we’ve visited the doctor regarding this but he was no help at all and just tried to tell her she was the only one who could change it (I felt like screaming in his face “SHE’S BRAIN DAMAGED YOU COMPLETE MUPPET she doesn’t think like other people, she needs meds to calm her down” (but she is already on a ton of meds so probably why he didn’t want to prescribe more)

I cannot commit to doing any of my hobbies because you can guarantee that the second I start doing something she will shout on me. (she obviously doesn’t mean to do this but its no less infuriating)

last year I managed to talk her into going into respite for a week and that was great (for me) but she hated it.
(nurses won’t jump to attention the way she expects me to)
I’ve been trying to talk her into going again for about the last 3 months but any time i mention it… hysterics

I’ve never been so stressed (and angry) in my life
I tried talking to my GP but again he was about as much help as a chocolate fireguard
“you just need to make time for yourself” and gave me a ton of leaflets for clubs and things I could never attend.

anyways sorry for the long rant but I just needed to vent a bit to get all of this out of my brain and onto “paper”

I’m wondering if there is anybody else I can contact to deal with MY problems besides my GP or social work (they are close to useless and seem content to pass you from department to department with no resolution.)

Hi Alan and welcome,
Many aspects of your story will be very familiar to many members here, although you do seem to have had the ‘full monty’ when it comes to bad things happening and a demanding caree.
Your mother is relatively young when it comes to aged parents so you could be in for many more years of this –unless you do something about it. You’ve come to the right place for suggestions and pointers but you have to decide what your future is going to be like.
A firm foundation to stand on is the certainty that no adult has to care for another, no matter what the relationship. If you do so, it’s because you chose to do it and you can chose not to.
Also you, your health, your well being, your life is just as important as anyone else’s. In fact more so than your mother’s because she has had 25? years more than you and has no legal or moral ‘right’ to steal your years from you.
Your mother must have had a ‘needs assessment’, hence the carers, but have you had a Carer’s Assessment recently? For a start you shouldn’t be lifting her at all. It’s damaging you and putting her in danger of being dropped.
You should be getting regular breaks and holidays.
Many members have found that counselling helps them to manage unreasonable demands from their caree, helps them to say ‘no’ and re-discover their own lives. Perhaps a visit to your GP to arrange some?
Members replying to your post will have lots of questions. Not designed to be intrusive but to help us make suggestions. Not all suggestions will fit your particular circumstances (we don’t know you after all) but please consider everything and begin to find your way clear of a bad situation.
There will be ‘light at the end of the tunnel’ but you have to decide to take the first steps towards a good place for both you and your mother.

Hi Elaine.
and thank you for taking the time to reply
yes mum did have an assessment years ago when Dad was her carer. (she has had quite a few assessments over the years)

since taking over the role I have never had a carers assessment.
as I said I’ve pretty much just been left to get on with it.

I don’t completely lift her, just support her back as she (tries) to stand but to be honest she doesn’t put much effort in and I am straining quite a bit (and yes I’ve felt a few times as if we were seconds away from being a pile on the floor)

we have a stand aid which is basically some handles on a swivel base, she holds onto it and I spin it round and sit her in her chair but she is not bearing her full weight on her “good leg” and I am supporting most of her weight with my hand on the small of her back. (whilst trying to spin the stand aid with my other free hand)

they know that I’m doing this and they know I cannot work the powered hoist on my own. (its a big machine)

another example of their attitude, mum has a hospital bed which used to be upstairs (we had stairlifts at that time). the carers and occupational therapist then decided it was too much hassle to get mum form upstairs and the bed had to be moved downstairs due to health and safety of their workers.

I had to dismantle the bed myself and carry all the parts downstairs then rebuild it (no concern about MY health and safety)
some of the sections of the bed weighed a ton. (luckily I’m a pretty handy person so the dismantle and rebuild wasn’t really an issue, carrying it all downstairs was the issue)
at that time I was still working and dad was still alive, I got home from work to the news that it had to be done by the next day or mum would have to stay in bed.
nowadays my mum never leaves the living room (except when we go out for lunch on a Tuesday, it took a LONG time to even get her to agree to one day out) and every week we go through the same performance …“do you want to go out or do you want to watch TV? you can’t have both”

they have basically just ignored the fact that I exist.

There’s so much wrong here that it’s hard to know where to start, so I’ll just mention a couple of things.

Your GP is correct, you MUST find some time for yourself - I do all of the stuff that you do, with only one paid carer four mornings per week to wash and dress my wife (I do the other three) but I get out for a walk almost every afternoon, just for a couple of hours, it’s a necessary escape, it’s “me” time, it’s vital.

I use a hoist for my wife for any transfer as she can’t weight bear at all, they are supposed to be used by two people but I find it easily manageable on my own. Does the Standaid you use not have a seat? You shouldn’t have to support your Mum’s weight when she uses it - take a look at a “Sara Stedy” and ask the OT about one - once your back is knackered you’re no use to your Mum.


I also find time for other hobbies, the housework can go hang if it gets in the way, no-on ever died of dust/cobwebs.

thanks Ajay

the manual stand aid we have is like this

the one you posted looks great but unfortunately its gonna be way too big ( with the other equipment she has, bed, hoist and her chest of drawers for her clothes are all in the living room there simply would be no place to store it. (unless we take out a chair and I sit on the floor) the sofa is already long gone.

there are only 2 rooms downstairs… the other is the kitchen (the current stand aid just about fits in the cupboard under the stairs) there are 3 rooms upstairs (one is my bedroom, the other my “living room” with all my synths and computer etc, i had a flats worth of stuff stored in the garage for nearly 5 years) the spare room is filled floor to ceiling with boxes of incontinence pads.

if I’m out of the house for even an hour I come home to mum in hysterics (as usual) even if I tell her I’m gonna be an hour.
(in her mind I’m lying dead in a ditch) if you can think of the worst possible situation in any situation, that’s the one mum goes for

I can’t even begin to explain how much of a nervous wreck she is
she was always a worrier but its beyond crazy these days (and once she’s done worrying about one thing she directly moves to worrying about something else.) I keep telling her she’s just not happy unless she’s moaning
as I said she worries about the most trivial things that anybody else wouldn’t even give a 2nd thought

Hi again Alan,
(Good name. My dad was also ‘Alan’).
I am no longer a carer as my Mum died 3 years ago, and I was lucky in many ways. I do know the ‘stand aids’ as Mum had them too.
My mum was a ‘large’ lady. When she could no longer bear her own weight to stand up, the Occupational Therapist recommended hoists. We had the mobile kind but neither carers or I could manage her using them as the slings hurt her and the OT arranged for ceiling hoists, on rails, to be installed. These were much better especially as we had ‘better’ slings. One was used for toileting and the other for transferring bed to chair/wheel chair to riser chair. The one for toileting had to have 2 people to manage it but the transfer one was a different design. Instead of crossing over at the front it was a very sturdy (had to be) non cross-over sling which I could manage on my own if I had to.
When it comes to being forgotten or ignored as a carer, you are not alone in that I’m sure. The thing is it seems that most carers aren’t offered anything. They have to ask and in order to ask they have to know their rights and what should be available to them. Many people on here say that it’s all about saving money or lack of funds and they have to fight for what should be readily available.
There is a load of information on this site to help carers financially as well as how to access help. If Mum has 2 carers 4 times a day, then that’s probably the limit they will offer, the next step being a Home (Is that something you would consider?) However YOU are not getting your share. The first step is a Carer’s Assessment so get onto SS tomorrow and demand an Assessment for both of you. I believe Mum’s should have been done regularly anyway.
Do take time to read the posts on here and the answers given as many will be of interest to you and explore all the information on site. Arm yourself with knowledge. Ask questions on here. Someone will know the answer or tell you where to find it.
Has Mum been seen by her GP lately? Has she been assessed as to whether she is suffering from any kind of MH problem. The excessive ‘worry’ isn’t usual. Has she always been selfish and demanding? (A very common trait of the elderly but your Mum isn’t that elderly.)
I seriously suggest that you go and see your own GP and tell them ‘how it is’. The situation is obviously getting desperate and you must not sacrifice yourself on the altar of Mum’s hysterics which she is using to control you.
Mum needs to be cared for. BUT it doesn’t have to be you doing it. Between doing everything yourself and spending every moment at her beck and call and walking away telling SS you are going on holiday for a month and it’s up to them to look after her, (which you could do), there’s a middle road to find.
First steps-Needs assessment, GP. Then members will help you sort out what’s next.
Keep posting. We’re listening.

thank you so much for this and I am sorry to hear about your mum.

luckily my mum isn’t a big lady (about 5 foot nothing and 8 stone) but being her son I’m not exactly a big guy myself

but this is it exactly , my whole family has always worked so really nobody has any clue about the benefit system.

and it makes sense now that I didn’t get anything because I didn’t ask. (I didn’t realize you even had to ask)

money isn’t really an issue as I said mum was very organized before her stroke and she saved well and had many policies for both herself and my dad

my brother was more in the know in that regard because his son is mentally disabled. (he had to fight tooth and nail for Lewis so he knew the ins and outs) I miss him so much, he was gone before I took over so I didn’t have the benefit of his knowledge.

it was my brother and SIL who fought to get the hospital bed the hoists, bathroom conversion into a wet room (which the carers now refuse to use) and there is no way to get her there now anyway because the chairlifts have been removed.
(it’s a split level house 2 sets of stairs bathroom in the middle)
i would ask Laura for help but she has a lot to deal with concerning lewis and just recently losing her husband.

the hysteria is completely bonkers… here’s a few examples
she has this notebook where she “writes” the name of every damn person who comes on the TV. if she misses a name hysterics. (the notebook was my dads doing because she was driving him mental constantly asking him the names of people)
I’ve tried to put my foot down a few times and take it away (because she is driving herself insane) you guessed it,… hysterics

she seems more interested in people she’s never met and never will than she does with me.

when we go out on a tuesday she MUST take the names of the people on bargain hunt before we go or… hysterics
(even tho we are not going to be watching the show) and even tho she knows every single presenter on that show like they are her neighbour she still insists on writing their name EVERY day.

as i said the carers come at 8pm (according to their rota) but as most of them know how upset mum gets if they are even a second late they try to come early.

so every night if it’s past 7:30 and they are not there… hysterics

she’s physically shivering, heavy breathing the lot.

and yep as you say if I say no to anything or try and put my foot down… hysterics
it’s honestly like dealing with a 5 year old.
for some reason she likes to have 3 bottles of water on her table, as soon as one is half empty she shouts on me for another
I complain “you’ve got 2 FULL bottles couldn’t it wait till I came down of my own accord”

hysterics (and 9 times out of 10 those 2 full bottles are still there when she goes to bed) but there is just no telling her that she only needs 1… you’ve only got 1 hand you can use and one mouth???

I give in here’s your f****%^£$ bottle of water.

it is driving me round the bend.

(btw I never mentioned I got a new puppy, she’s 9 months old now and tbh she’s the ONLY thing keeping me sane.)
I can take her out for a half hour walk each morning and come back to a relatively sane mother.
(any longer and I’m dead in a ditch in her mind)

i’ve had enough
and I’m now at the stage of “I don’t give a damn if you’re my mother I don’t want to do this”

Last post because I’m off to bed. Carpet fitter arriving at some unearthly hour in the morning.
The forum is unusually quiet. Ajay and I seem to be the only members posting.
You have to reach out for help. I’m completely ignorant when it comes to Mental Health problems but even I recognise that your Mum’s obsessions and reactions aren’t usual. My Mum went ‘peculiar’ at the end of her life -but she was nearly 100!
Lovely that you have your puppy to give you an interest and a reason to get out for a while. Also that Mum recognises that the dog needs a walk.
Hope you have a good night’s sleep tonight.

this will also be my last post of the night
and i promise that in the morning I will contact social services

the really weird thing is that for the most part mum is “still all there”
beyond the compulsive obsessive things she’s still able to hold an intelligent conversation (on the VERY odd occasion we have one)

I’m also going to make an appointment with my GP and pretty much say what I’ve said here.

thank you both Ayjay and Elaine you’ve given me some things to think about and at least a way start moving forward.

Alan, welcome to the forum.

This CANNOT go on!

Your mum clearly has some serious issues and no one is believing you about how bad it is.
You need help and evidence. Keep a diary for a week, and every time mum gets hysterical record it on your phone. Then show it to the GP. Ask to have a visit and help from the CPN, Community Psychiatric Nurse.
If mum is financially well off, do you have Power of Attorney?

The best short term solution is to contact a Care Agency for help, a carer you can refer to as a “cleaner” to help YOU. Then you can stay to start with, but then “pop out” for longer periods, until you can get regular time off. Has anyone mentioned NHS Continuing Healthcare to you? It is something of a postcode lottery, I’m afraid, but mum might be entitled.
Who took the stairlifts out so mum can’t use the wet room???

hi bowlingbun

I like the idea of recording on my phone
i will also take mums notebook full of unintelligible scribbles of tv personality names so he can see what she does every day. (if she doesn’t have her notebook she again loses the plot) her answer is always “it’s important to me”… but WHY is it important… she has no answer for that.

mum is quite well off (well at least for a pensioner) and yes I do have power of attorney.

nobody has mentioned anything to me, nobody has given me any guidelines or contacts.
nobody has ever assessed me, probably thought i would just take over where dad left off (i was more or less caring for them both for the last 2 years of dads life but it was nowhere near as bad then as dad could still do simple things for mum and I was still able to work) everything I learned about dealing with mum came from my dad.

it was social services who took away the stair lifts, and made me move a hospital bed downstairs on my own
(sure I could have waited until they sent some engineers to do it but that would have meant mum would be bed ridden for 3 days and I was not prepared to allow that to happen)

it was the carers who refused to use the stair lifts anymore because moving mum was getting too difficult for them apparently
it was only a few of the carers complaining as far as i know (most of them just got on with their job)

it used to take them a good half hour to 45 mins each morning to get her up and showered and downstairs
now we are lucky if they are in the house more than 15 mins in the morning as her bed is literally 5 feet away from her chair (the visits during the day last about 5 mins)

they also NEVER stick to their times in the morning. mum gets a rota each week saying who will come and at what time
they regularly show up an hour early in the morning, I’m exhausted enough without them stealing an hour of my time in bed.

I’ve tried talking to the care company about this but they just say the rota is only a guide and sometimes things change (lets say another patient is in respite) they are not going to sit about doing nothing for an hour

that’s not my problem I say, they just don’t care and pretty much suit themselves.

Good evening Alan.
Did you get anywhere today.? It can be a battle.
If Mum has a care plan where the Carers are supposed to be there for a certain amount of time, then that’s the time they should spend. Mum cannot possibly be properly washed and dressed in a few minutes. If her personal hygiene isn’t being properly taken care of then she is in danger of developing sores. You can’t be expected to inspect her groin for example. Any red patches on her bottom? Carers should know. If they don’t, then they are negligent.
Who is paying for her Care? Whoever it is they are being cheated.
This situation has developed because you have thought it was up to you to do everything. You have not been told or realised that both you and Mum have rights and proper help is due to you both.
Well, you know now and no-one is going to hand you all the knowledge and answers you need. You have to find out for yourself. Unfortunately and wrongly, that’s the state of ‘Carer Land’ This site will help a great deal.
You have been drowning in what Mum does and says, what you have to do to look after her, how miserable your life is, (all quite understandable and common) but you have now grasped the edge of a life buoy. You have found this site which will provide you with friendly if only ‘cyber’ support. Use it and any other site you find to gain knowledge . Ask and explore.
There’ s no magic wand. There’s no instant fix. There is better than what’s happening now. Seek and you will find. (What’s that a quote from? I can’t remember).
Good night.

Definitely, take on the suggestions of earlier posts. If one GP does not listen, speak to another. Tell them your mothers behavior and it’s affect upon you. Keep on until you get results. I’m a carer for my elderly mother who has extreme difficulty staying in doors by themselves and can’t go out by themselves. Shes 75 and has mental illness, unreasonable behaviour and anxiety. (I should not diagnose but perhaps your Mum could have OCD.) If she does there is medication, which will help. And the GP could give her something for her anxiety too. With medication everything should improve.

Sometimes, you’ve just got to say a firm no to those we care for. I used to leg it to the local village, so as to not leave Mum alone for long. She was pleased ‘oh you were so quick’. I’d please her and still get abuse from her later. I wised up one day, when I had fatigue and realized I could not keep running. I now take my time. I sit down some days enjoying the sun on a bench.
Has your Mum always been demanding or is just now she’s got older? I’m sure you love your Mum, but google the words narcissist just to make sure she does not fit that definition. Sorry, to mention that word, but sometimes it helps to know what you are dealing with, if that is the case. My mother is definitely a narcissist and I knowing what she is has helped me in some ways. Perhaps, your mother is just demanding, due to her anxiety and compulsions. I certainly have no wish to tarnish your Mums character.

If you are capable of leaving your mother for longer then do so. Self matters.

Two ways around the housework. Tell her you are doing it during the day, but offer not to do it during a favourite program. If she kicks up a fuss. Just do it. I’m sure if positions were reversed, she would not be catering to you to such an extent! Alternatively, since you say that money is not an issue you could always get a cleaner in for an hour or so, then you can escape.
We learn from childhood that we want to please our mother and it can certainly be rewarding to please another person. However, you need to do your upmost to make sure you are not neglecting yourself totally in the process.
You are not responsible for another persons emotions. It’s up to your Mother to either control them or take medication to improve the situation. Say no more often to her. It’s a difficult situation with meltdowns, as they can also control/ manipulate you. My mother used to threaten to call the a Police, if I left the house.
Make excuses. ‘My dog is not getting enough exercise. My dog not going to have longevity unless I give it longer walks.’ Anything, that gets you out of the house for longer.
Speak to a local carers association, as sometimes they can offer a sitter.
You should also be able to get time for your hobbies indoors. If you mother is happy to binge watch tv then she should be capable of giving you some peace. Perhaps, with some medication this will be more possible.
I’ve been a carer to my mother for 22 years. I also cared for my father, until his death. I came across a phase last week, which was something along the lines ‘Don’t take a backseat in the audience for your own life.’
I’m in the back seat, as I suspect are many carers. Try and take the front seat every week at least for a while.
I realize it’s not easy. Get a carers assessment made.
Alternatively, you could consider a home.

thanks everybody for all the helpful advice

I have managed to arrange a visit from SS to assess the entire situation
and not next week but the next mum will be going into respite for a week. it took a while to convince mum but i got there in the end

I also have a GP appointment on Friday where I will explain the situation and what it is doing to me.
as suggested I have been keeping a diary and I now have quite a bit of video showing mums episodes.

people are asking if mum has always been demanding and selfish. the complete opposite is true.
before her stroke she was a completely different person she was always a bit of a worrier tho the stroke seems to have amplified this to dangerous levels and it has only got worse since my brother and father died.

to answer Elaines question, the local council pays for the carers (it is subsidized and mum pays some of it) not a huge amount tho.

I’ve every sympathy with your situation. My Mum sounds a bit more independent than yours but in some respects I can see the future with her. Mum ‘whittles’ about everything, what the neighbours are doing, what the cat is doing where the piece of paper she had 20 years ago is etc. I don’t [as yet] live permanently with her but I do stop several nights a week and it is exhausting - I have no idea where you are finding the strength at the moment. I’m in awe!

I will text her to let her know that I’m leaving mine although I no longer say ‘I’ll be with you in 10 mins’ because if I’m 2 mins late she’s hovering at the door having got herself in a state.

She’s also obsessed with her own health. I’ll arrive to a litany of complaints going from her eyes [she can’t see] to her headache [it never goes] to her back [it hurts when she bends down] to her legs [ditto] and we go from one to the other in a rotation. Any attempt to get her to the doctor is hopeless and it makes it impossible to know exactly what is real and what is imagined. Even now she’s in hospital having broken her hip I’m still arriving to a litany of ailments although she apparently never tells the doc or the nurses. Weirdly she never complains of pain in her hip!

it seems to be a thing with dementia apparently, focusing on daft or unimportant things.

It does seem that unless you can pay for the carers yourself you are at the mercy of whatever the social services/council provide and then it’s on a 'cram ‘em in and b**ger it’ school of thought. Two friends of mine are having problems with carers and it largely seems to come from the number of clients they have and the degree of pressure they are getting from managers to visit more than humanly possible. It must be hard to find any sympathy though when you never get a break from it.

hi nikki
thanks for sharing your story with me.

you sound to be in a similar situation with your mum so yeah you “get it”
the obsessions literally consume my mum.

it has got to the point now that i could tell you exactly what is going to be said tomorrow and exactly the time she will say it.

the situation with the carers is exactly as you say, those ladies try their best and most of them are really nice but they are only given so much time and as you say it’s “cram them in” mentality.
mum is quite well off as i have said but if we were to pay for the entire services that she gets that money wouldn’t last long.
so we are at their mercy to an extent.

thanks to everybody here I am making progress and starting to see light, we’re not there yet but at least things are moving in the right direction

Hi Alan
I can identify with you on so may levels here. I was drawn to your post by its title. I feel the same. After twenty years of caring for my parents in their own home I how have my 91 year old mother living with me following a stroke. I never thought it would be so hard. My mum wont even watch her TV and she doesnt like it if we watch any of the TV’s downstairs so I have to watch it in bed for an hour before I go to sleep exhausted. My social life/holidays/job has gone out to the window too and if I feel like a glass of wine in the evening I have learned that I need to pour it in a mug rather than a glass because she disapproves of alcohol.
My house resembles a nursing home and I have had to accommodate as much of her clutter as possible as she doesnt understand that we cant fit two houses into one. I could go on all night with my list of frustrations. Everyone tells me how good I am to do this for her, and deep down I know she appreciates it. Someone likened it to looking after a small child, and I have to agree that it is but usually when you have a small child there is an expectation of them achieving independence one day, for me I know that my life sentence ends when my mums life does - and then I feel guilty…its a vicious circle.
There is nothing anyone can do to help me practically - she wont have carers or go into respite., she just wants me looking after her. And I know its not forever. I just need to speak with other people in my situation and to know that I’m not the only one who gets these despondent feelings!!!