So a little bit about what im dealing with at the moment:
-been a carer for my mum since i was 14
our family all live far from home with thier own families so theres nobody else around
So if been a carer for my mum since i was 14. She was in a big car accident before i was born and it smashed her pelvis up into 4. When i was about 7 or 8 she was tokd that she had spinal disk degeneration and arthiritis in her hip spine and pelvis. It was fine for the first few years but after that she was mostly wheelchair bound.
My mum is normally able to do some tasks on her own i.e able to gwt out of bed and start to have a shower(id help her when she needed the help) but
Fast forward to a few weeks ago, my mum had been in so much pain shes been completely bed bound for the last few weeks. Meaning my job got a lot harder. I have to help her roll over, get in and out of the bed, walk to the toilet, keep the house in order (theres a lot to it but it doesnt sound like it when you write it down). She recently had an MRI scan that showed that she had a pathological fracture in her 3rd lumbar vertebrae which means it was caused by a disease so shes got to go for even more tests.
I’m becoming really stressed out as the house is super messy and i dont get time to clean it. Ive had to leave my job as a carer for a wonderful company as i cannot handle the extra strain as I’m up most of the night helping her too.
There is no way to make our house accessible for her as we live in a private rented house and we wouldnt be able to do the rennovations necessary to make it adequate.
I’m just super stressed at the moment and we cant afford to get anyone in to ease my workload. Im embarrased by the state of the house too. And having an untidy house goes against our rental agreement with the landlord too so im trying my best to get it done asap.
I also suffer from depression and anxiety and its having a big effect on my mental health. I love my mum and I’ll do anything to help her but I’m not sure how to manage to keep the house clean and look after her and have a life at the same time.
A Needs assessment for your Mum and a Carers assessment for yourself.
If you’re already a carer then I’m sure you must know about these, but you may have just slipped into the routine of caring for your Mum which has now grown to the point where you need help.
You definitely need some help as you deserve to be able to live your own life, which at age 22 is only just starting. You need to be enjoying yourself more and probably thinking about a family of your own, This is going to be difficult to achieve without help in the current circumstances.
Remember, no-one has any obligation to care for anyone else no matter what their relationship.
In the long term do you wish to continue caring for your Mum. Or would you like a planned way of relinquishing the care you provide to her. Are you expecting to remain living with Mum in the future. If not I would register with the local council for better accommodation. This could be together to start and when Mum is settled. Start to hand things over.
As already mentioned an updated needs assessment is required, Does Mum have an O/T. O/T’s can write recommendations for appropriate accommodation. Given you Mums health I would think you stand a good chance on the housing list. But you need to be clear if you want to move and remain with Mum. Or if Mum’s needs are so high it’s more like residential care.
Shelter are the go to charity for good advice on housing matters.
Sorry to hear your’e going through this, it sounds very demanding and stressful and it’s not surprising that you’re feeling burned out and overwhelmed. I’m sure a lot of people here understand how you’re feeling.
It’s important to get all the practical and financial support you’re entitled to. Have a look through our advice pages to see what this is:
You can contact the helpline on 0808 808 7777 from Monday to Friday, 9am – 6pm or email advice@carersuk.org with any questions.
You might want to connect with other carers in your area, lots of groups have regular meet-ups etc. Have a look here to see what’s in your area:
As regular meetings may be suspended at the moment, Carers UK are running weekly online sessions where we come together informally to share experiences and offer support. You can sign up here:
You are 22 and should be happy and carefree, out with your friends, having fun.
Mum is clearly very seriously disabled now, and it’s time to work out what she needs for her future, without you filling in all the gaps.
How old is mum?
Is she privately renting, or housing association?
Do you know if you can stay there if mum goes into a home?
Is she claiming Attendance Allowance?
Has anyone mentioned NHS Continuing Healthcare to you?
That is way too much to be doing at age 22. Clearly not a sustainable situation.
Firstly contact social services for assessments
Also look into Continuing Health care.
Have you thought about looking for alternative accomosation for your mum where there will be help on hand.
By all means ask social services to see if they will help with paid carers to dp some of the caring for now but the wider issue is what to do longterm.
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What do you want to do with your life?
Hey guys thanks for replying ill try and answer as much of them in order as i can:
1. Have you had any contact with social services?
I have not spoken to social services yet as its only recently my role as carer has gotten a lot harder to manage, I used to only help with little things such as tidying up, cooking and helping to wash her hair if she had a flare up, but because recently shes been bed bound for the last 4 weeks my roles been a lot harder meaning i have to help with everything. We dont have a full diagnosis yet but we do have a ct scan tomorrow which will hopefully tell us what disease has caused the fracture in her spine. Im also trying to get the house tidier before i call social too as I also have my pets which like to make a mess.
2. In the long term do you wish to keep caring for your mum?
I still want to help look after her as after all she is my mum but i dont want to see her as my patient if that makes sense, im happy to do the things I used to do like pish her in her chair to go shopping and cook but ive been doing it since I was young and i want to spend more time with her as her daughter and not her carer 3. Are you expecting to remain with mum in the future? if not I would apply with the local council for better accomodation.
For at least the next 4 or 5 years i will be remaining with my mum, im in a long term relationship and we do eventually have plans to live together but wont be for at least 4 or 5 years so we can have time to save up for our own place. We have already applied with our local council but they do not have any accomodation suitable in the area we would like to be in. We are expecting to get some inheritance after a family member died which means that we will be able to buy a bungalow and get it adapted so for the meantime were sticking where we are as theres no point moving out into a council house in a location that not where we want to be for say 8 months and then move out again when we are able to afford a bungalow. Another reason the council dont have anything is because of my pets I own 2 dogs, 1 cat and 3 rabbits
4. Does mum have an O.T?
Yes she does and she has already written a reccomendation for us. But as I say our council have nothing available for us.
5. Its important to get all the practical and financial help.
I get my carers allowance at £67.25 a week and i get income support at £29.15 a week. This is all i am entitled to.
6. How old is mum?
Shes 60 in 2 weeks time
7. Is she privately renting or housing association?
Private rented, our landlord is really nice to us too.
8. Do you know if you can stay there if mum goes into a home?
I wont be able to as i dont have a job so won’t be able to pay the rent.
9. Is she claiming attendance allowance?
No. When she asked she was told she wasnt eligible
10. Has anyone mentioned NHS Continuing Healthcare to you?
They havent I dont know what it is.
11. What do you want to do with your life?
Honestly i dont know anymore. I used to want to be a vet nurse but had my dreams crushed when uni branded me too mentally ill to do the course. My goal in life is just to be happy.
You have a lot of responsibility in your life at the moment.
Your mother’s situation is at a stage now where she will need more advanced care. Due to the ongoing after-affects of her car accident and the compounding effects her more recent disease/illness will mean that further, ongoing professional care is needed.
You also say that you are managing your mother’s care on your own because your family live far away and have their own families. Sadly. This is a very common occurrence. In situations such as yours - and you’ll find many will agree - the family do tend to ‘keep a distance’ and not be too involved.
One solution is to break everything you do into small, manageable steps. Writing down a list every morning may help.
We are slowly emerging from the serious effects of the Covid-19 lockdown and this means that many health services are - albeit restricted - returning to some form of normality.
You may benefit from some counselling to help you deal with the depression and anxiety. You may also be experiencing stress as well.
Dealing with your mental health will also be a very private issue for you. The problem in your situation here is that you will be worrying about your mother’s physical and mental health. Yet not your own problems.
This is where counselling may be able to help you.
It’s very important that you ‘get on top’ of your mental health situation because - at the end of the day - it is your health that will need to be the priority. Even though you are caring for your mother, it is your own health that enables you to do so.
Caring for your mother will be both physically and mentally demanding. What people don’t understand is that your caring role is now a full, full-time job. When you were caring as a professional worker, you would at least have been able to ‘call time’ after a shift.
Your mother’s needs are now becoming more advanced - and so will the need for more complex professional care. This may be in the form of a ‘Package Of Care’ in which the professional carers will visit your home a couple of times a day - depending on your mother’s needs. That at least will be a start.
Although fortunate to have a good, caring landlord, you are now in a situation where there is a need for more specialist accommodation. If the local authority do make an offer of suitable accommodation that suits your mother’s specialist needs, then it would be worth seriously considering the offer.
If you refuse. You will be placed ‘further down the list’ or lose your place of ‘priority’.
You also mention the inheritance that you will receive following a family bereavement. This will create a legal situation that will need professional advice because - depending on the amount - your financial/accommodation/care support status will change.
For a start. You may consider discussing seriously with your mother about what you will both do together about the money. Without causing offence of course…
Do you and your partner use the inheritance to buy a house together? Your mother may get more help from the social services if she is claiming as a single person without a live-in carer.
If you and your mother decide to official stay together and you be her live-in carer, then the money will become an asset that will form a major part of your care assessment needs. Meaning you will have to pay for the extra professional care, care equipment and property adaptations.
You may not be entitled to social housing (with the necessary adaptations) if you are classed as ‘financially capable’. This is an area where you will need to discuss this together and seek professional advice - whether it be through the helplines, social services, voluntary organisation or a solicitor…
As you have already written in your post. You want to be your mother’s daughter, rather than her carer. There is a financial difference between the two which will need to be addressed.
Do you and your partner lead separate lives from your mother?..You can still visit your mother everyday and attend to her needs…Yet at the same time her care needs can be met by having professional carers everyday.
It’s a case of discussing the options…The issue of the money can depend upon who has inherited it. Have you inherited the money as the sole beneficiary? Has your mother inherited the money as a sole beneficiary? Is the money to be shared? It can be a tricky area…So do consider it seriously.
At the moment, you get a carers allowance. This will cover you as a carer that lives with your mother. You would forfeit this if you were not to be your mother’s carer. However. Your mother would be able to claim as a single person who needs professional care. Again. You’ll need to seek advice on this.
Finally. Back to you and your mental health. As mentioned earlier. This is an area that you will need to address if you decide that you still want to go to university and do the vetinary nurse course.
You have your own life to lead as well, which involves taking care of your own physical and mental needs.
You had a job that you enjoyed. Making some life changes, such as arranging for more professional help for your mother will allow you to go back to work.
You may also want to research the many different educational routes to entering university (subject to Covid19 restrictions at the moment). Part-time courses, flexi-study, apprenticeships with ‘day release’ to college and so on…All worth looking into.
Schools, colleges, universities and workplaces are now accepting the importance and accommodating for mental health issues. At least they are starting to anyway.
Regular counselling will help you to overcome your mental health issues. You are under a lot of stress at the moment, which is not helping your situation. Discussing your issues with counsellor and learning some self-help methods will help you to deal with all of this.
It’s now a case of moving forward and planning the arrangements between you.
Just an update guys. The pathalogical fracture was caused by cancer. Unfortunately its terminal but we dont know how long weve got until the biopsy results come back. We have carers coming in twice a day now
I’m very sorry to hear that. Lots to get your head round.
It’s really important that the doctors give you some indication about how much longer mum has left, even if they don’t think it’s in mum’s best interests to know.
Ask the doctors treating her to arrange “NHS Continuing Healthcare” for mum, which will give her free care either at home or in residential care.
