Lonely, trapped, sad, guilty to name but a few. With dad suffering from rapidly advancing dementia, mum struggling with her own mobility whilst trying to look after dad, brother with learning disabilities, my hands are full and my emotions are wrecked whilst trying to continue running my own business/work.
I want to do as much as I can to make all of their lives easier and happier but it is never enough and I see all three of them continually asking for more time and support despite all having their own carers to different degrees - they are wanting and missing family support over and above the essential professional carers but in reality there is only me left now and constantly feel like I am letting them down every time I step aside to try and recharge my own batteries. Outside of the emotional support needed there is the hours and hours of time spent co-ordinating care and looking after two homes in addition to my own.
So sad and painful to see once vibrant parents deteriorate in front of you and seemingly pleading for more help and support whilst trying to understand that I work and have my own life. Once they pass on, I don’t want to look back and think that I could have done more in their last few months/years.
Becoming isolated from friends is very easy as many really don’t want to get involved with a sad and complicated life - often easier to step aside and let them carry on with their lives.
Brave face to the world but a welcome chance to open up on here with people who will hopefully understand. Not looking for answers, just some understanding.
@Mark_20031 BIG empathetic hug from me
I hear you. It was clear even from your last post New to the forum - West Yorkshire you’re already doing 72 hours of work in 24 hour time period with your parents and brother dependent on you to coordinate everything.
I know you said you do cycling as your ‘venting’ system - are you able to get out to cycle these days?
I don’t think it will surprise you when I say your heart will continue to get punched and torn up even more as your parents get worse, especially with your dad’s dementia. There will be things that are said they can’t take back, and then they feel guilty, and then get depressed. My Dad did that all the time and we cried together…sometimes that’s all you can do…because it all sucks.
I totally get you feeling lonely sad and guilty. Finding people to talk to helps, …I know you said ‘many don’t want to get involved…’ but I’d challenge that to ask is that you feeling the weight of having to explain everything and hoping they’ll be empathetic vs 'telling you what to do to ‘solve’ it all…?? Any friendship and sharing can feel full of effort and risky when we don’t want loads of unsolicited advice BUT I’d encourage you to reach out…if not to people you already know then to Carers UK Cuppa Care for a Cuppa | Carers UK
Or mobilise - another organisation supporting unpaid carers: https://www.mobiliseonline.co.uk/cuppa
The bit I really hate to say, but is honest truth…you will let your parents and brother down…because it’s just physically and emotionally impossible to make their lives 100% happy. It’s not how life works. Sorry to get all philosophical on you. The reality is we’re perfectly imperfect humans. Human means 24hours in a day and physical and emotional limitations.
SO, the biggest toughest thing is to say ‘NO’…sorry I don’t want to be harsh but to your
the toughest love response I can say is…you have to be around later to actually be able to look back in hindsight!
In the darkest depths of dad’s care I had to say to them that I need to survive them both - it’s NOT guilting them and it’s not being selfish…it’s what (hopefully!) all parents want for their kids…for their kids to outlive them…I’m sorry if that’s really harsh…It’s easy for me to say but horrible to read/hear…
I’m blessed I have amazing parents who weren’t into the whole ‘filial piety’ of chinese culture..(unlike other family members) otherwise I’d be battling cultural concepts like ‘duty to parents’
So yep, I get it and hear you…no solutions, just hoping you get to do more cycling since that’s what’s been working for you.
Thanks for a true and honest reply @Victoria_1806. Cycling remains my regular release and long may it continue as it works amazingly well! This forum is my first real attempt at reaching out beyond my wife and is already making a difference just reading and hearing other people’s stories.
You’re very welcome, @Mark_20031 I’m so glad you have your wife to talk to.
I’m sure others will chime in too. Everything you’ve expressed is what we all feel too. It’s why forums and connecting with other carers is so important.
Also great to hear you’re still able to cycle - I had 1 hour everyday on the treadmill in the worst times and it was, as you say, a weird surprise at how much it helped and saved my mental state.
Mark, at one time we were caring for all four parents, son with learning difficulties and running a business. My husband died in his sleep from a massive heart attack at 58, soon after his dad, before my mum, all our hopes and dreams for retirement gone.
Try to think of yourself as Care Manager, not provider.
Your brother needs a place of his own now, somewhere else. Is anyone talking to you about this?
Have you sorted out Power of Attorney for your parents?
Are they all getting the benefits they are entitled to?
Most important question though is do they own or rent the home from council or housing society?!
If renting, you and your brother will probably be given Notice to Quit soon after the last parent dies or goes into care.
Hi @bowlingbun and so sorry to hear the difficulties you have had to endure - certainly puts everything into perspective and I always remind myself that there are others in far worse positions than myself. We are also looking after 4 parents but fortunately we are all living independently of one another in our own properties with only my brother in rental with carer support. All the practicalities including benefits and LPAs are sorted and in place but thanks for flagging these important areas.
Hi Mark @Mark_20031. I feel your pain, your anguish, your frustration and your exhaustion. Others on here are wise and correct, you will never be able to meet all of your family’s needs, without breaking yourself.
I joined the forum almost a year ago in total desperation with caring for my Mum. I know it’s only one person compared to your three, but mum and I have never been close and she has always been abusive to me in lots of ways. Folk on here including @Victoria_1806 and @bowlingbun got me through and held my hand through all the trials and tribulations until I gave up in February and a very understanding GP helped me to get my Mum into a Care Home, where she has continued to be a monumental pain the bottom, but is at least at arm’s length now.
I am slowly rebuilding, accepting that non-family carers are the best thing for her now, despite what she wants. I know that eventually I will be at peace with knowing that I did EVERYTHING I could for her before relinquishing her to others and before I broke completely. In the future somewhere, I will have no guilt whatsoever about giving up, because I realised my own life was slipping by before my eyes and she had no right at all to commandeer my life the way she was. I hope
that day will come for you too, even it seems a long way off right now. Sending you 