I am new to this site. I have just joined as I feel so isolated and incredibly lonely.
I have been caring for my Mum for many years and apart from a few difficult episodes where she got really unwell, my mum was fairly independent and she required minimal support so it enabled me to have a reasonably active and fulfilling life.
However a few months ago my Mum’s health took a turn for the worse and she has become fully reliant on me for her every need overnight. Even though I knew that my Mum was getting older and her needs would increase NOTHING prepared me for such a drastic change and the impact it would have on me and my physical and mental health and wellbeing.
Feelings of responsibility that you have a duty to provide care as your parents did for you, sadness and heartache watching your Mum deteriorate and be in pain right in from of you and the feeling of helplessness when you cant do anything, even resentment as you feel as if you have been robbed of your life and a sense of loss as you feel as if you have lost yourself and you are now invisible. People who you considered as friends diminishing at every opportunity and either ignoring or cutting short your phone calls. That’s why I turned to this site for HELP. Just to talk to someone who really understands and knows what I am going through. The roller coaster of emotions. I am scared too that I will go under. Then I will be of no use to anyone, least of all my Mum. Is there ANYONE out there to talk to.
Hi Joanne, can I ask whether your mum has had a Needs Assessment from Social Services, and you, a Carers Assessment?
Has anyone told you about NHS Continuing Healthcare?
Is mum mentally deteriorating?
Can you share your ages.
https://www.carersuk.org/help-and-advice/get-support/local-support
Friends can disappear because they don’t understand how to offer help. And what type of help we need. That why carers need to link up with like minded people. Who understand the daily struggles.
Hi Joanne
I’m sure someone else on here can help you way more than my post will, but I just wanted to say that I completely understand what you say and how you feel, and possibly what you are going through.
I’m sure there are a lot of other people on here that will do too.
I hope that brings you just a tiny bit of comfort or reassurance.
Stay strong.
Pauline
Hi Joanne, I understand exactly what you are going through.
What is wrong with your mum? You say there was a ‘drastic change’ in her. Is there any hope that she might make some recovery? If not then you have to accept that her care needs are too much for you (or anyone) to deal with on their own.
Please put yourself first. You are the important one here. It is really important that you get time to yourself on a regular basis.
I was in a similar situation to you and I got leaflets from my local library and GP’s surgery about how to get professional help which has really helped me.
Please keep in touch,
Karen x
Hi Joanne,
I’m in the same boat so understand what you are going through. Mum has gone from being a sassy independent woman to someone who can’t even open doors anymore due to her arthritis.
I’m watching her wither away as each day goes by and like you, it breaks my heart.
I try to do the best I can but sometimes doesn’t up losing my rag. I also care for two other family members.
Friends will come and go. To be honest, none of my friends are in the same situation so I don’t really expect them to understand.
At the moment I am stuck in limbo and don’t see a way out so I normally come on here for a rant.
Good luck to you. Wishing you all the best.
On the verge, if you are caring for three people, it’s vital to have some outside help, you just can’t please everyone all of the time - it means you have no time for yourself!
Joanne
Hi sorry to hear you are having such a challenging time.
Your feelings describe the way a lot iof carers feel being stuck in this situation.
Have you considered looking fir a residential or nursing home for your mum?
If she is needing a lot of night care that situation is not sustainable. You need your sleep.
Do let us know how you are today and what your thoughts are.
Hi joanne, i was going to start a thread, first time posting here, but then i searched ‘resentment’ and your post came up… and it felt like i could copy and paste your feelings. its taken a while to even have the energy to write this, but now im q desperate. I hope you are ok Joanne. Wishing you strength.
My mum had a stroke in January and cannot move any of her left side. as well as the physical effects, i find her to be a totally different person, and it pains me to say incredibly frustrating one too. I’m 29, I moved back from 3 years living in Berlin to live with my mum after her stroke, its been 11 months, 4 months since she came home from hospital. She has managed to work v hard so we are lucky to have a full time carer, but they are from an agency and come and go every 2-5 weeks. I am constantly explaining every aspect of her care and I cover for them on their breaks and give them a full nights’ sleep a couple of times a week. My mum takes about 1 week to get used to a new carer, in the meantime she always asks me to take her to the loo (she needs to go ALOT!) or find some small item or do whatever etc, and i find it so hard to say no. we live in a tall narrow house utterly unsuited to her, (she is so stubborn and refusing to move) so i have to show the carers how to use all the strange equipment to get her down the front stairs too. (only one carer wants to return… my mum is too demanding and exhausting for them which rules out a regular).
Sometimes i also just find the constant chat about my mum, her bowel movements, her inability to want to drink water, what she’s doing, what she’s said, every tiny detail with the carer… its just too much. I also find having to live with new people hard, making small talk, when really I just need that extra time for myself. But at the same time… they are helping me in my mums house and I feel the need to treat them like a guest. Because of the layout of the house, my mum can’t go everywhere so that’s why it falls to me to do it.
I’ve been back home for a one week break and then two week break and it was nice. I’ve only found two carers that I’ve felt confident with to do this. I know my mum doesn’t like it… but i’m starting to think that maybe its better if she misses me… than having me around 24/7 and not being my best self. i was amazed to find that no, I’m not actually depressed, its just the situation is so, so hard. I found it easier to feel extreme sadness about her situation and compassion when away from her. the second i walked through my mum’s door from the airport it all came flooding back… The frustration, the pressure, the suffocation, the feeling that the life you are living is sadly not the one you planned.
Its awful that I think these things because, sure as hell, a severe stroke isn’t the life my mum planned either, and its not me that can’t walk or be independent. She was a highly independent single QC barrister at the top of her game. It pains me that I sometimes complain about the things i have to do for her, or little time i have to work (im self employed) when she’s the one who can’t even do anything independently. I need to be better at keeping my thoughts to myself. Does anyone else struggle with this? Its just that if I’m in the house (which I am 24.7 due to covid) she will always ask me to do everything before the carer.
The pressures are just so high, the reward so little, sometimes I think about our relationship and we don’t even get on well now, the stroke has changed her, she’s more uptight, stubborn, linguistically pedantic, materialistic. we have nothing to talk about as friends and always rub up against each other the wrong way when im trying to help her (ie healthy meal plans, drinking water, doing her exercises, trying to save her money, expressing my terror and concern at her impulsive shopping etc!!).
Its just so sad… I hate it when I think I just don’t even enjoy anything about the time we spend together now, which is even worse because we have so much of it… She’d be devastated if she read this… its all just so heartbreaking.
The worst part is is that she says she needs me SO MUCH. she is constantly saying my brother and i are all she has, she would be nothing without us, any time spent with me is fantastic, how much she misses me… even if i spend one night at my boyfriend she interrogates me as to when i will be back… I just gave up trying to stay at his for a break
heSometimes on the days when shes’s so tired she’s a bit like a high functioning demanding zombie… i flash forward to her in 20 years (she’s still so young) and it breaks my heart. How can she cope with this life now? How can I cope with it?
Its so hard to find someone to helpless so annoying and I hate that I find her annoying. It makes me dislike who I am.
I started seeing my first proper boyfriend just before my mum’s stroke. He’s been amazing, but I hate that all i have to talk about in life is my mum… her bowels! what she did, what she demanded, what we should be doing and what she wants… I don’t want our relationship to be about my mum. friends: I don’t really want to talk to them about it, i don’t want pity, but i also can’t lie… so telling the truth about the situation would be too hard.
I have an older brother but he has a 2.5yr old and a newborn and doesn’t live in london.
All you saints out there doing it full time without an external carer… I honestly don’t know how you do it.
Hi Joanne,
Welcome to the forum, you’re in the right place to connect with other people who understand exactly how you feel. Many carers describe these feelings, and the current situation makes it so much harder.
We run weekly online meet ups where carers chat informally and take a bit of time for themselves, you’re very welcome to join and there’s no pressure to share anything you don’t want to. Sign up to join us here:
https://www.carersuk.org/help-and-advice/get-support/online-meetups
Also, have a look through our help and advice pages too, and check you’re getting all the support you’re entitled to:
There are also details here of local groups where you can meet other carers in your area
Best wishes
Jane
Mary, someone needs to have some difficult conversations with mum. Clearly she will never be able to cope alone in her house, in fact even with all the support she is getting, she isn’t really coping.
It is incredibly sad and unfair that mum has had a stroke when she had strived so hard for her career, but the time has come to work out what she NEEDS for the future.
A disability friendly property is surely at the top of this list?
However much she loves her current home, it’s just not suitable any more.
Does mum have any health insurance that would give her ready access to counselling?
You should not become a victim of mum’s stroke.
What would mum, pre stroke, be saying to you about having a life, a career, a family?