[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
I don't want to provide care anymore - Carers UK Forum

I don't want to provide care anymore

A place for those 18-35 to chat about all things caring.
Hi, so since my dad died I have been helping my mum with her needs.
She has physical disabilities as well as mental ones which are getting worse, although her physical disabilities are manageable, her mental health needs are a huge problem.

Based on past traumatic events, she has complex mental health needs and they are very difficult to deal with. She also had a limited education thanks to family putting the care responsibilities of her dying mother on to her age 16. Because of this she has no qualifications.

Her history with her mental health has caused her to be sectioned multiple times over the years, she can get violent and very self-absorbed. In fact she is so self absorbed, she tends not to understand the pain I am in most of the time. It is really affecting my mental health.

One of her main things is being afraid to be on her own. I work full time and its a job I worked hard for and do not want to give it up. Once I come home from work she expects me to sit with her until she goes to sleep then watch over her whilst she is asleep just so nothing bad happens. This is impossible. Other than work, I am not allowed to go out anywhere. I have lost friends and its very hard to maintain a relationship

Dad used to support her and be her carer, but it is a role that has seemingly passed on to me and I do not want it. She had support from the local mental health team and has a care coordinator. The care co-ordinator does not seem to understand the fact that although mum may be intelligent in some ways and capable, she does not understand the type of care they can offer. Mum also doesn't want to discuss past issues yet, they stated unless she asks for it then they wont do anything. The care coordinator does very little to contact mum otherwise. She now wants to close mums services saying she does not need them. Disgusting.

All this is really affecting me, a huge argument happened and I left the property to stay at my boyfriends house. His parents have offered me the opportunity to move in. I want to be with him. Whilst there my boyfriend has told me I sometimes I shake nervously in my sleep and he is worried.

I do not want to go back. I don't want to do this anymore, but I dont know what to do.
Hi Coolcar,

You need to contact social services and the care co-ordinator and tell them when you are withdrawing your support - you need to give them an actual date. Advise social care that without your support your Mum will need an updated Needs Assessment. Ensure your Mum has the contact numbers for the care co-ordinator, social care etc and then move in with your boyfriend's family. Be prepared for the fall out and keep any contact with your Mum on your terms only. You will need to be strong.

Melly1
You say that mum has been sectioned several times.
Sometimes that means she is entitled to lifelong care afterwards. I'm not sure of the exact details though.
What a terrible situation you are in.

Once caring for a loved one starts to effect your own mental state of mind, it’s time to let go and let the professionals deal with it. Once you notify them of your withdrawal they have a responsibility of care for your mother.

We all have one life and you need to make the most of it. Selfish as it may sound, we as the sons and daughters of mothers and father’s were not put on this earth to solely take care of them in their later life.
We give as much as we can and help them the best we can, but if they are becoming selfish and not being considerate of your needs then you must let go as a career and become a loving daughter again and then and only then will the resentment go away. Stick by your decision trust me the professionals will have no choice but to get involved.

Take care of you
Hi there I can completely relate to a lot of what you have said.
I am 33 and currently a carer to my mother who has COPD and osteoporosis. We are not even currently sure what stage the COPD is at now as she refuses to have a breathing test done and as done for the last couple of years. She is not currently on oxygen however. Her condition is treated with nebulisers and the occasional course of antibiotics when she has an infection.
She has been separated from my father for some years and I have no siblings. My father doesn’t look near as he’s formed a new life for himself and to be blunt, they’re separated so I get it isn’t exactly his problem. However he knows the stress I have been under and continue to be under as I’ve communicated it various times.

I have been her carer for a few years now but it is only since 2019 that my role has become more. At that time I had a full time job (which I had worked hard to get and had worked my way through the ranks of the company) and I was in a relationship.

Back in 2019 she ended up in hospital with a chest infection and was kept in overnight, I popped home to check on our dog only to find she had passed away in her bed. It was this that started a real downward spiral with my mother, I believe this is where she ‘gave up’ a little.

Fast forward to now 2022, I work part time and other than work I am not able to go out generally - only to the gym which I rejoined for the sake of my mental health, but even then I cannot be out for long. She lives in one room of the house now and has done for 2 years plus, despite my father installing a handrail to make getting up and down the stairs easier. She never comes downstairs.

I walked out last year as I’d had enough, nothing I was saying was getting though and I went to go and live with my partner a good 90 miles away. I was extremely suicidal at that time and I know if I had stayed, something would have happened.

Long story short the guilt ate away at me and I returned in January this year, my mum promised she would accept outside help to give me more balance (something she had always resisted) and that I could absolutely have a social life e.g. go out after work, go for overnight stays. Whilst I was away she was looking into getting another dog, looking at a particular breed that she would be able to tuck under her arm and look after with little trouble. It was after I returned that we rescued a little dog. However when I brought up wanting to go and see my friends for a couple of days, the guilt trips started. Implying I could not leave the dog overnight in her care as she could not cope. Now I feel completely fed up again as I have tried time and time again to communicate that I need more of a balance and my own mental health is suffering greatly in all this. Anytime I speak about it I get comments such as ‘well I feel like a burden now.’ ‘I feel terrible now’ but nothing ever changes as once those comments start I then feel rubbish and back down. She has witnessed me in tears numerous times over the past few months, I have been open that I worry for my future when she’s gone as I’m facing the prospect of having to start all over again in my 40s.

Now I’m at a point where my mental health is the worst it has ever been and I don’t think I can continue this.
I have struggled with depression and anxiety since my late teens, I’ve been on antidepressants for the majority of the time since the age of 19. This is again something both my parents are aware.
Coolcar98 wrote:
Tue May 24, 2022 11:05 am
Hi, so since my dad died I have been helping my mum with her needs.
She has physical disabilities as well as mental ones which are getting worse, although her physical disabilities are manageable, her mental health needs are a huge problem.

Based on past traumatic events, she has complex mental health needs and they are very difficult to deal with. She also had a limited education thanks to family putting the care responsibilities of her dying mother on to her age 16. Because of this she has no qualifications.

Her history with her mental health has caused her to be sectioned multiple times over the years, she can get violent and very self-absorbed. In fact she is so self absorbed, she tends not to understand the pain I am in most of the time. It is really affecting my mental health.

One of her main things is being afraid to be on her own. I work full time and its a job I worked hard for and do not want to give it up. Once I come home from work she expects me to sit with her until she goes to sleep then watch over her whilst she is asleep just so nothing bad happens. This is impossible. Other than work, I am not allowed to go out anywhere. I have lost friends and its very hard to maintain a relationship

Dad used to support her and be her carer, but it is a role that has seemingly passed on to me and I do not want it. She had support from the local mental health team and has a care coordinator. The care co-ordinator does not seem to understand the fact that although mum may be intelligent in some ways and capable, she does not understand the type of care they can offer. Mum also doesn't want to discuss past issues yet, they stated unless she asks for it then they wont do anything. The care coordinator does very little to contact mum otherwise. She now wants to close mums services saying she does not need them. Disgusting.

All this is really affecting me, a huge argument happened and I left the property to stay at my boyfriends house. His parents have offered me the opportunity to move in. I want to be with him. Whilst there my boyfriend has told me I sometimes I shake nervously in my sleep and he is worried.

I do not want to go back. I don't want to do this anymore, but I dont know what to do.

The best thing is to stay with your boyfriend and let the authorities provide the care that your mother needs, this is by a team of people and you are just one person, you cannot do it.

Think of yourself, because the authorities are not doing so and will not do so, while you are doing their work for them they will let you do it.

As has been said, brace yourself for a bumpy ride over this, be steadfast and strong for your own wellbeing, trust that it will be alright when the dust has settled. Be resolute.

You have a boyfriend and his family who truly care about you, let them support you in this as they are right and care for your wellbeing. Let them know you are grateful.
Carly_2205 wrote:
Sun May 29, 2022 1:57 am
Hi there I can completely relate to a lot of what you have said.
I am 33 and currently a carer to my mother who has COPD and osteoporosis. We are not even currently sure what stage the COPD is at now as she refuses to have a breathing test done and as done for the last couple of years. She is not currently on oxygen however. Her condition is treated with nebulisers and the occasional course of antibiotics when she has an infection.
She has been separated from my father for some years and I have no siblings. My father doesn’t look near as he’s formed a new life for himself and to be blunt, they’re separated so I get it isn’t exactly his problem. However he knows the stress I have been under and continue to be under as I’ve communicated it various times.

I have been her carer for a few years now but it is only since 2019 that my role has become more. At that time I had a full time job (which I had worked hard to get and had worked my way through the ranks of the company) and I was in a relationship.

Back in 2019 she ended up in hospital with a chest infection and was kept in overnight, I popped home to check on our dog only to find she had passed away in her bed. It was this that started a real downward spiral with my mother, I believe this is where she ‘gave up’ a little.

Fast forward to now 2022, I work part time and other than work I am not able to go out generally - only to the gym which I rejoined for the sake of my mental health, but even then I cannot be out for long. She lives in one room of the house now and has done for 2 years plus, despite my father installing a handrail to make getting up and down the stairs easier. She never comes downstairs.

I walked out last year as I’d had enough, nothing I was saying was getting though and I went to go and live with my partner a good 90 miles away. I was extremely suicidal at that time and I know if I had stayed, something would have happened.

Long story short the guilt ate away at me and I returned in January this year, my mum promised she would accept outside help to give me more balance (something she had always resisted) and that I could absolutely have a social life e.g. go out after work, go for overnight stays. Whilst I was away she was looking into getting another dog, looking at a particular breed that she would be able to tuck under her arm and look after with little trouble. It was after I returned that we rescued a little dog. However when I brought up wanting to go and see my friends for a couple of days, the guilt trips started. Implying I could not leave the dog overnight in her care as she could not cope. Now I feel completely fed up again as I have tried time and time again to communicate that I need more of a balance and my own mental health is suffering greatly in all this. Anytime I speak about it I get comments such as ‘well I feel like a burden now.’ ‘I feel terrible now’ but nothing ever changes as once those comments start I then feel rubbish and back down. She has witnessed me in tears numerous times over the past few months, I have been open that I worry for my future when she’s gone as I’m facing the prospect of having to start all over again in my 40s.

Now I’m at a point where my mental health is the worst it has ever been and I don’t think I can continue this.
I have struggled with depression and anxiety since my late teens, I’ve been on antidepressants for the majority of the time since the age of 19. This is again something both my parents are aware.
COPD breathing test refusal is probably out of fear.
My mother has severe COPD, only 30% lung capacity but she is not on oxygen because her blood oxygen levels are 95%

The breathing tube test is of no use now for my mother, the GP said there is no reason to do it anymore. He listened to her chest on the stethoscope and said they're down to 30% capacity and there is scarring on one lung possibly from pneumonia or collapsed lung and he offered x-ray to see if anything more sinister but didn't think there was.
So basically the GP can just ask to listen to her chest and deduce a lot from that.

It is only when the blood oxygen levels are low that they qualify for oxygen
Do you have the finger oxymeter to test her levels?

My mother only has a nebuliser in hospital when she gets a chest infection which hasn't happened for over 2-3 years now since being on Trelegy inhaler

Ask the GP about Trelegy inhaler if she isn't on it, it's once a day and has medicines in it to help guard against flare ups and infections, it has really helped my mother in that sense.

Breathing, my mother has another inhaler, the GP said use them even if they don't feel like they are working they are helping.
She gets out of breath just brushing her hair or removing her top/putting one on.
Transferring from bed to wheelchair can leave her in a near state of collapse.
Her heart is making up a lot of effort for her lungs.
BUT she will not let it stop her, she has not given up, she wants life, she wants to get out to the garden centre, she wants to be in her chair, she wants to get out and see the garden, see people go by.
She has such a zest for life and to live.
My mum already has the Trelegy inhaler which I believe she’s had for almost a couple of years now. She insists it doesn’t help. So also does monitor her oxygen with the finger oxymeter, quite often it’s around the 95-97% mark. We have been told before that a COPD sufferer can sometimes expect to see a reading in the high 80s and that is classed as normal due to the illness.
Reading how much your mum still tries in spite of her illness has shone even more of a light on my own situation. My mum lives in her bedroom now, she hasn’t been out of the house since well before the pandemic apart from for medical reasons.
Oxygen levels below 88% are a call for the GP or an ambulance call out of hours.
A GP examination will reveal what lung capacity i.e how much of her lungs are working, my mother as said 30% i.e just under a third of her lungs are working.

My mother was saying Trelegy doesn't make a difference but I told her she isn't going through boxes of tissues coughing and she isn't going to hospital with chest infections or pneumonia. Thus it has proved itself!