[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
My heart is broken.... - Carers UK Forum

My heart is broken....

Tell us a bit about yourself here.
Good Morning All.....

I am 30 years old and cared for my mum who suffers with MS literally my whole life- i never got to see my mum walk. My mum was diagnosed at 18 and is now 61. My dad has been the most amazing gentleman and has stuck around and loves my mum to absolute bits. I also have a sister but she does not help at all except for when we are in the shit with hospital admissions.
The last 10 years or so have been absolute hell, since her swallowing became effected and she now can no longer speak or do anything. We have been in and out of hospital more times then i could ever count.She is fed through her peg and can only communicate with her eyes. The last couple of years it has really started to effect her mentally which i guess has been the hardest bit to watch.
Luckily i have an amazing husband whom i married in 2015 who is very supportive of all the time i spend looking after my parents, but of course it has put a huge strain on our relationship and my mental health. I do wonder sometimes if he will stick around.... we dont argue a lot or anything, but i cant possibly be making him happy. I long to be free like all the other people my age, i long for a good job that i am happy in and not just there because it works for me caring for my mum, i also long to start a family and travel freely without the worries and guilt I carry on a daily basis. I've never had the chance to be "normal"

The most I'm struggling with is my dad has aged. He is 67, retired, exhausted with to much time on his hands consumed by killing himself to keep my mum alive. I struggle that we are now completely dependent on carers coming into our home just to give us a break and time to "live" We have no privacy anymore.Our home is not our home. Its hard to explain. but its awful. I hate relying on carers.

Would love to speak to anyone who is in the same boat as me. Its destroying me and i worry so much about my future. I'm only just realizing the impact this has had on me........ and to be honest i can admit i I love my parents too much to walk away, but i dont want to do it anymore. My dad tells me to live and be free, but then his actions differ....... he completely depends on me.
Emily, love and pity can tear us to pieces - as you are experiencing.

This is only in haste, as I have to go out now, but how much 'external care' is your mum receiving? Does your dad try and do everything himself? It's essential when severe illness/disability is the case, to have the MAXIMUM amount of outside help, whatever the feelings of either you, your dad or your mum.

You MUST have some time to yourself, for you and your husband, however difficult to seize for yourself.

This is a very, very sad thing to say, but so much of what you do now will depend, really, on what your poor mum's life-expectancy is now. I know that's brutal, but it does come down to that. Obviously you want to do the best for her, while she is here, but the 'how much' may really very much depend on the 'how long'. What we can do 'for a while' is NOT what we can sustain for yet more and more years.....

Kindest wishes at a difficult time - Jenny
Emily, it's so difficult. Is it now time for mum to move into residential care nearby, so she has a team of carers to look after her, but where you can visit as much as you like? Is mum receiving NHS Continuing Healthcare, i.e. free carers?
Oh Emily, it is heart breaking. I can relate to a degree in that my Dad has a progressive neurological illness that he has had perhaps for the past 15 years, diagnosed around 12 years ago. I was a little younger than you when he was diagnosed. I am now 41. I have not been as responsible for his care as you are for your Mum and didn't grow up with him being ill. But I completely "get" just wanting to be like everyone else. I feel envious of friends who have parents to help them with childcare or just have a family that gather for a Sunday lunch as this isn't possible for us.

I have also been able to live my life. I have married, travelled and had children in this time. And I urge you to do the same as much as you can. My husband and I took a carer break 10 years ago to travel the world and I was worried sick Dad might die whist we were away, but 10 years on he is still with us! As a parent myself I know that all I want for my kids is for them to lead happy and fulfilled lives and I am sure your Mum and Dad want this for you too. And perhaps this would give them a lot of pleasure to see you fulfil yourself too. Perhaps try and take some baby steps towards your future. What is it you want most first? To travel? Take a weekend away with your husband. New job? What would the dream be? Could you do a little volunteer work to get closer to that? Children, well there is never an ideal time to have kids, just go for if that is what you want. Whilst it is hard being a "sandwich" carer, it does put your life in perspective and my parents adore their grandkids.

As someone else said, I guess a lot depends on your Mum's prognosis? Hard as it is to think about. Perhaps it is also time to think about a nursing home too? We are in this position with my Dad at the moment. And whilst it has ben really hard to consider I know it is for the best as we can't go on as we are. And I hope longer term it will make times with Dad nicer rather than just the drudge of caring for him.

Take care of yourself and good luck.
My mum was too frail to live at home any more for the last year of her life. She was admitted to a nursing home just a mile away from me, which I passed every time I went shopping. So I could pop in whenever I wanted, often shared afternoon tea with her, I could buy fresh flowers for mum's room and arrange them for her - mum had a lovely garden and ever since I was little I would pick and arrange flowers, so this was the most natural of activities for us.
We went back to being mum and daughter again, so much better than when she was at home and I'd have a long list of jobs given to me before mum had even said hello to me properly! Residential care means that there is someone available day or night, whenever they are needed. Nursing care means that there is a nurse permanently on duty, so if strong pain medication is required, it can be administered without delay. Really important when someone is in constant pain. It does not mean someone is abandoned, in fact I visited mum more often as I knew it would only be a social visit.