Newbie here!

New to Carers Connect
1

Hello to anybody reading this!

I’m new to this site & the forum so not sure whether I’m doing this right but I’ll give it a go…

My story in a nutshell:
I’m 27, suffer with H-HSD & Fibro, now unemployed and cares for my Mam. She has chronic COPD & Fibromyalgia and last year she was diagnosed with secondary cancer. The primary source is still unknown and as you can imagine that leaves us with a lot of uncertainty. To be blunt - uncertainty is shit & it’s crippling not having answers. It’s caused havoc with my mental health and daily I am battling my inner deamons dealing with depression and anxiety and all the symptoms that come with. I have ignored my own health and wellbeing whilst being there for my Mam and I know this is wrong but I can’t help but put her first, I also don’t know how to say no. I genuinely feel as though I’m gonna burn out soon if I keep on the way I am.

The reason I joined this group was not to have a pitty party but just to see if I could connect with others in a similar situation and to see if there are any support groups OR if any of you lovely caring people know of any cancer / bereavement organisations (not the usual macmillan & st davids) that can give support to carers either over the phone or face to face, I will massively appreciate it!

Thank you to anyone who took the time reading this! :slight_smile:

2

Hi Flower,

Caring for anyone is stressful, even more so in your situation.
What sort of treatment is mum having? How much hands on care does she need?

I’m very concerned that you don’t mention any outside help. Obviously I don’t know if mum has been told whether it’s a slow or quick growing tumour, but usually a hospice offers care in the patient’s home, as well as in a building. Our local hospice supported my dad for a very long time when he was battling with prostate cancer.

Is mum claiming Attendance Allowance or PIP? Are you claiming Carers Allowance?
When did mum last have a Needs Assessment from Social Services, and you, a Carers Assessment?

Very often there are local services that are not advertised, so ask Social Services if there are any support groups locally that might help.

To maintain your own wellbeing, you need some regular “me time”, when someone else cares for mum so you can go out.

3

Hi Bowlingbun,

Thank you for your reply.

There isn’t a lot of outside organisations helping us as Mam doesn’t want that. She doesn’t want people poking their noses about in her life, neither is she having treatment as she doesn’t believe/like/want medicines. I’m okay with all of that, I truely am, but I could do with some help or support from time to time being the sole carer.

Macmillan previously got it all wrong, st davids hospice done the same and then discharged her too soon, she has been treated poorly and unfairly in the past even with her cancer diagnosis so she feels hard done by and will not accept any help which in turn has made it difficult for me accessing help. Even St David’s have refused to speak to me as Mam ain’t a patient of there’s no more, that doesnt help, being told no from “cancer specialists”. :frowning:

Life is very difficult at the moment, being the sole carer for Mam’s means there’s nobody to look after her when I need a break which means I don’t get one. But I know I definitely need one.

4

Presumably you are not a specialist “end of life care” nurse>

If not, Mum is either going to die

In hospital
In a hospice
At home with hospice support.

She is going to need very specialist nursing care. If you Google “Signs of Dying” you will find some really good articles written by people from the hospice movement - there is so much to consider to arrange a good death.

You NEED time off, sleep, and rest. All impossibel when someone NEEDS 24/7 care. If you get ill, there is going to be no option but for mum to accept some outside care.

Most of all you need to share this time with, who can explain what is happening to mum, what will happen next, etc. etc.

Can mum walk, use the toilet, have a bath unaided at the moment?

HOUSING
Does mum own or rent her house?

This is a vitally important issue. Do not ignore this question. Your own future is about to change forever, and you need to know where you stand asap.

FINAL ARRANGEMENTS
Has mum told you what funeral director to use, who to tell, what music she wants?

MONEY
Is mum claiming highest Attendance Allowance now? Any other benefits? Do you have Power of Attorney? Have you gathered together full details of her bank, pension plans, insurance policies etc.?
Have you checked to see if any of the policies pay out when she has a terminal diagnosis? I helped my brother when he was dying, and found he had £10,000 available to him that he never knew about, this way!

Please don’t bury your head in the sand over all this. I’ve now lost all four parents, husband, and brother. You need to organise everything asap. Have a notebook, saying who you rang, their number, what was agreed, etc.etc.

No need to tell mum more than is vital, but the more you plan now, the easier it will be later.

5

When the time comes to register the death, please ask the registrar if there is a ,
“Tell us once,” service in your area.

It’s extremely useful, cancelling things like state pension, library tickets, blue badges,
council tax, etc etc etc without you having to do a thing

6

Hi Flower,

So sorry to hear what you are going through. I hope you will continue to stay with us till such time we can try help you access local services. In the meantime, click on this link and scroll down to the drop down box. If you click the area you are from, hopefully some local services close to you can be found.
https://www.carersuk.org/help-and-advice/get-support/local-support

Have you had a word with your GP? Either them or your local council should also be able to advise on local groups. It may be worth an appointment with them anyways, to discuss how you are feeling.

Cancer Research have an online support group too, which has a section for carers - Get support if your loved one has cancer
https://www.cancerresearchuk.org/about-cancer/cancer-chat

Carers neglecting their own health is not uncommon. Many members of this forum, including myself, have experience of this. However, you need look after yourself just as much as your mam.

Will your mams GP talk to you? If not ask your mam if she would be willing to write a letter to them giving permission that they can do so in the future.

Other members above have gave great advice too. As regards benefits, please consider seeking professional help from local welfare rights or citizens advice bureau. Claiming for one benefit can counteract another at times, and system so complicated these days that you may need help.

If there is something for mam to claim your GP may issue a form DS1500 ( not sure if she is at this stage yet).

FORM DS1500. This is a form, completed by a GP, Consultant, hospital doctor or specialist nurse, which enables someone who is terminally ill to claim Personal Independence Payment or Attendance Allowance (AA) under what the DWP calls “Special Rules.”

We can only give general advice on forum as each set of circumstances are different, and also questions regarding income are confidential. CarersUK have their own helpline too, details on this link
https://www.carersuk.org/help-and-advice/talk-to-us

Hope this gives you something to work from.

Please keep posting

x x

7

My dad had terminal prostate cancer, which would leave me as carer for my very disabled mum. The GP (same practice as me) refused to talk to me about dad, especially how long he had left.

Then I rang a cancer helpline, found someone incredibly understanding and supportive. I was asked to tell them dad’s current signs and symptoms, and they told me it was unlikely that he would live longer than 6 months.

Armed with that information, I went back to the GP, told him what they had said. He told me he still couldn’t talk specifically about dad, but he could talk more generally about patients with prostate cancer.

He told me dad would muddle along, until such time as he took to his bed, and couldn’t get up easily. Then things would progress very quickly. This was spot on, dad managed OK until one day, when he couldn’t get up. He died in the hospice 2 weeks later.

I would urge you to do the same as I did, it gives time to prepare yourself. It’s horrible, but it’s all part of life. We can support you on the forum through this, the forum was a huge help for me when I needed it, and afterwards.