New member, glad this exists

Hi I’m Claire,
I’m 25 years old, I nanny in the evenings and taken a break from my masters to help my mum after a hospital bout. I live with her and always have, slowly became a carer over time as did more and more personal care of the years. Been a carer for approximately 2 1/2 years now. My mums health gradually declined after my sister died. Some days I feel utterly hopeless and overwhelmed, others I realise it’s not so bad.

Only recently have I gotten help, she has carers 3x a day now. I wasn’t managing at all before, constant tears, anxiety and fear. Life was hard for mum as no facilities provided by social services either. Things have since improved.

Joined at 2am after having to prevent my mum from falling out of bed… one of the harder moments. No tears just felt sick and completely disoriented as awoken abruptly. Love my mum so much and feel a little guilty for speaking of her like this, but also feeling robbed of my youth a little. It’s so hard.

Hope I can get to know you all and share the good days too.

All the best to you all,

Morning Claire, I just wanted to say hello as I also joined this morning after a couple of incidents involving both parents in law. I know I am alot older than you but I do understand.
We have my in laws live with us. MIL has Alzheimers, DIL is being assessed for Demetia, he also has Prostate Cancer, depression and general old age (he is 89).
My dad passed away 3 years ago also to Alzheimers and my mum has Breast Cancer, She lives in Newcastle and I feel guilty that I am not there for her and my younger sister.
Both hubby and me are tired and lost.
We dont have any physical help and to be honest not sure how to make a start. We had a social worker once 5 years ago but that was it.
I have left my job to be here full time. Sorry for rambling, but am here if you need to talk.
Gill x

Hi Gill,

I’m really sorry to hear, that sounds like a massive load to carry. Cancer in the family leaves you feeling helpless let alone being miles away and a carer already.

I lost my sister to cancer and shortly after my mum deteriorated as stopped taking care of herself due to grief. I miss my sister so much, her death changed everything. I just hope some day my mum will realise there’s still a life to live for and gain her sense of self again.

Have to wish for better days or it becomes too heavy too fast.

Claire, what is wrong with your mum? Can you tell us more?

You are sadly right - caring for her is robbing you of your precious youth. I think at 25, you are probably thinking ‘my twenties are passing by’…we become ‘thrifty’ about our years. At 22 you might have felt you have ‘lots of time’ …now you don’t.

What is the prognosis for your mum?

Do you think you provide as much ‘emotional’ support for your mum, as ‘physical/practical’ support? If so, which is ‘harder’ for you? (Sometimes it is the emotional support - the ‘neediness’ and ‘dependency’…)

One thing is unarguable. At 25 you ‘should not’ be spending your life looking after ANYONE else. That is the ‘starting point’.

What does your mum think? Does she urge you to ‘leave home’ and start your ‘own’ life?

Have you got any social life? Boyfriends? (girlfriends?). Or do you live ‘your mum’s life’…? (Many carers live the life their carees live - had my 89 y.o MIL continued to live with me I would have lived HER life…ie, the daily routine of a very elderly lady…not that of a middle aged woman!)

It is CRIMINAL to me for you to have given up doing a Masters degree to be mum’s slave!

Are you and mum having any sort of grief counselling?
Does she realise that you too are grieving?
(I ask because my disabled housebound mum was so self focussed that she was moaning to me that my dad had been taken from her too early, at 78, when my husband had just died at the age of 58!).
That was the moment I realised that she had become so self focussed that my primary role had become little more than a personal slave.

Please don’t think you can wean her off your support while you are there. She will want more and more, not less and less, because it’s always easier to get someone else to do something than do it yourself.
Your role needs to become that of care MANAGER, making sure she has the care she needs, rather than personal care provider.
Don’t live your life along the lines of “When mum is better we will…” You need to enjoy your twenties, they will never come again!

Hi Jenny,

Mum has diabetic neuropathy, diabetes and is unable to walk hardly at all. We have a fantastic relationship we speak about anything and everything. She’s mentally very bright and suffers no mental disabilities. Emotionally she can get very tearful and upset when she’s unable to do certain things.

She urges me to live my own life and is very youthful in her mental approach to life. She’s open minded, kind and compassionate and worries about me looking after her. I just struggle as there’s been times I’ve left the house for the weekend to let carers take over and have come back to mum on the floor after a fall waiting for someone to come for hours. She’s now in the process of getting a link line.

Mum won’t improve prognosis wise. The emotional support is by far the hardest part. As she gets tearful when I clean her up, tidy after her etc.

I have an amazing boyfriend of 5 years but it’s very hard to explain the role of being a carer to others who’ve never lived it. I have a few close friends and a very close cousin who’s also a good friend of mine. It’s just impossible to explain to people who haven’t experienced being a carer.

Which is what brought me here. Thanks so much for listening and replying, I just need to talk to people who understand.

The Lifeline system is brilliant, it’s not exaggeration to say that my mum would not have been able to live alone without it. It will certainly make it easier for you to go out knowing she has it. Make sure the call centre know that if mum falls when you are out, they should first call the ambulance, then you.
Does she have a keysafe so the carers and ambulance staff can get in when you are not there? If not, Social Services should be able to arrange one.
Now that carers are coming in and out, you need to take security very seriously. Make sure anything you don’t want to go missing, especially jewellery, is in a locked room within the house, and keep your own room locked when you are not there. If mum is upstairs, if she has a good size room, consider getting a kettle and toaster up there, and maybe a small fridge, so the staff can spend maximum time with mum, not in the kitchen.
Does mum have a hospital bed?

Wil resume my masters next September as it will give me a career which pays well for less hours of work. Having to think about the future what will happen when I marry and have kids? I don’t want to work long hours care for mum and my own family.

Must add, mum and I have an excellent relationship she’s a modern mum despite having her issues. She wants me to marry and move out but that’s not going to happen for me as is… need to work towards that. So I’m the mean time trying to figure how to cope right now. I like the idea of a care manager! Such a great way of putting it and perhaps I should resume some counselling while I figure out what to do. My needs often get lost along the way, not sure if she realises… not her fault it’s just so much is going on that my emotions tend to get pushed back