Hi my name is Steph. I’m 29. I guess I’m just looking for a place to vent and share and maybe meet someone who understands my situation.
My mum has a rare brain illness called Corticobasal Degeneration. There’s no cure. She was diagnosed 6 years ago. I gave up work in 2019 to care for her full time.
Lots has happened which I don’t really want to go over but basically I’m tired!
I am tired of explaining to people what I do as an unpaid carer.
I am tired of getting no money or value for my role (don’t even get me started on how low Carers Allowance is).
I am frustrated when people ask what I do for a living and getting a pity response.
I am sad to have to say no if friends invite me to things.
I am sad that I can’t travel or go on honeymoon as mum relies on me to wash and dress and give her meds and food.
I am sad that I’m giving up a lot of my own life to care for mum but proud at the same time that I am able to (there’s lots of conflicting feelings).
I feel responsible all of the time. Responsible primarily for mum. Responsible for my dad (who also helps care but struggles with it and has his own health concerns related to type 2 diabetes). Also sometimes feel responsible for the strain my caring role puts on my marriage to my husband.
There’s just a lot of emotions going on. I usually get 3 or 4 nights off a week when my dad looks after mum. But even that time off for me can be stressful as they don’t get on much.
I’ve had 2 private counselling sessions and she said I am coping so well and I’ve worked through a lot of the tough emotions myself. I basically felt like she didn’t know what to do with my situation.
All of the Carers UK events I have so far attended online are older men and women who care for husbands or wives and I can’t relate to what they talk about.
My life isn’t bad. I am very lucky in some respects. But I’m sad that most people I know just can’t possibly understand what I am going through as an only child caring for my mum with a terminal incurable illness.
I’m not really after advice or solutions, just people my age in the same boat who get it and some encouragement.
Hi Steph, did anyone explain to you at the beginning of all this about the various care options available for mum?
You should not have ended up in the position you are now in. Your husband deserves better than a part time wife. What about the dreams you both had when you married?
How old are your parents?
What outside help are they accepting?
Firstly welcome to our forum, this sounds like a very difficult and stressful situation you are dealing with, and over quite a period of time.
I know you said you’ve attended some of our Carers UK events, have you come along to our care for a cuppa session on a Monday? If you’ve not been recently, please give it another go, we’ve had lots of new carers come along recently of various ages and I think you’ll find they are more representative across the age range now. I’ve added the link for you https://www.carersuk.org/help-and-advice/get-support/online-meetups
Many of our new joiners have said how helpful they’ve found the sessions and of course there’s no pressure to share anything you’re not comfortable with.
We also have a our share and learn sessions Share and Learn | Carers UK which are a mix of fun and relaxed sessions. Please have a look at the link and see if one grabs your attention.
Yes we were told about various care options. Mum’s wishes are to be cared for and die at home which my dad and I are honouring. Whilst we are able to do it, we will.
We had a local authority care package but we stopped it due to the Covid risk in March 2020 and when we asked about recommencing it they said they could only do half hour visits (mum needs min. 1 hour). So that wouldn’t work. Mum also gets extremely distressed with new staff who don’t know what to do (mum has lost her speech so can’t tell them) and I was fed up with basically training the staff so do it all myself. It’s actually easier and quicker when I do it and mum is more comfortable because she knows me. But obviously I’m only one person. I basically do the job of two paid care staff, a trained nurse and a domestic every day. It’s not that I can’t do the job, I can and I’m good at it but it takes an emotional toll.
I wouldn’t say I am the “part time wife” you refer to. I’m emotionally available for my husband and completely committed to him. My husband understands my caring role we discussed at length before we married that a lot of my time would be spent caring for mum. Family is very important to both of us so he supports my decision. With regards to our “dreams” we want to go travelling but have postponed this until its possible.
My parents are both 64. No outside help currently except a monthly “check up” from a district nurse (when they bother to remember the appointment). A private care company could be arranged but I have worked for a private home care conpany and the turnover of staff would be a problem for us due to mum’s needs.
I’m not making excuses regarding external care - it would be great if it worked but based on past experience it hasn’t in the past and wouldn’t now. I genuinely believe that I am providing the best care in the circumstances. The practical support isn’t the issue - its the emotional support I need as I stated in my original post.
You have gone through so much in becoming the carer for your mum, the role reversal and facing her terminal diagnosis and seeing her deterioration is a lot to bear, particularly as an only child but if you had other siblings there is no guarantee that they would be local or would want to be involved.
It is hard not being able to go to events, missing out on things and not being able to go on holiday, the carers allowance is pitiful and yes you get pity or platitudes from others. People live within their own experiences and can’t understand the extent of what you are going through or experiencing. Your feelings and frustrations are normal, but one day they will be replaced with an awful loss and freedom.
I understand about the carer situation, it can be very high turnover and no use at all.
If having Social Services arranged staff doesn’t work for you, were you offered Direct Payments?
When did mum last have an NHS Continuing Healthcare Assessment?
Again, Direct Payments should be an option.
Your current arrangements are so fragile.
Surely another pair of hands would enable you to have some rest at least with housework, if not personal care?
Hi Breezey,
Thank you so much for your response.
It’s nice to have someone like you listen and acknowledge my feelings rather than offering advice or solutions.
Best wishes
Steph
Hi Steph
Sometimes you just need to be ‘heard’ or to vent.
I am caring for my mother alone, I have a lot more years in life than you but the situation is the same in several ways so I get it. Yes there is a lot of conflict, it is normal and natural human responses.
I hear you with the tiredness, I find ways of switching off my mind, little brain rests/holidays - this is my time now, my brain break, make some soft boundaries - my time and look forward to it and enjoy it.
You are giving a lot of yourself, what are you giving back to yourself? You sound like you need to replenish yourself.
I understand the tiredness of constant responsibility, sometimes you need a break for your brain, some carefree time, coping mechanisms.
So a carefree night with your husband going for a meal, a picnic or watching a film at home with your phones off for the duration is something to consider.
If you like board games or computer games together try doing that for a brain holiday or some other activity together that absorbs the mind in doing it and requires sole concentration on it for a few hours. it really does give the brain a rest.
Even doing your food shop, phone off, switch your mind off, fill the basket - we get deliveries but sometimes I have to go out to get things and I will get a lovely apple to enjoy in the car with the radio on before I return, my indulgence, today I had a packet of crisps.
You are allowed to turn your mind off to rest it.
That counsellor might have been saying what she thinks you need to hear or didn’t have experience of such cases, try a different one, then another and another - they say it’s like finding a pair of shoes to find one that fits, good grief!
