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22 year old Carer - lonely - Page 2 - Carers UK Forum

22 year old Carer - lonely

Tell us a bit about yourself here.
bowlingbun wrote:
Sat Dec 15, 2018 6:57 pm
Hannah, I only found out all this stuff the hard way I'm afraid!

Is there anyone close to dad who could have the "difficult" conversation with him, about how you will manage in the next few months, to help him sort things out for you? Dad needs some support and counselling as much as you do.
Oh no the hard way is what I’m afraid of! I’m sorry that you had to go through a tough time.

We don’t actually have anyone close to us, apart from my friends (in their 20’s). It’s part of the reason I’m so scared because there really has been no one to talk to.
I actually researched a councillor for my dad previously that specialises in cancer patients etc, however my dad refused and is really avoidant of counselling. I then visited him myself and it was helpful but it was costly £50 an hour so I’ve had to stop going now.

Do you have any suggestions for support for my dad? I worry so much about how he is feeling and just want him to be happy.

Thank you 🙏🏼
Dusty wrote:
Sat Dec 15, 2018 8:53 pm
Dear Hannah

I am so sorry you and your Dad have reached this point. I hope you will find that the Palliative Care team help you not just with the actual care but also with what they call 'difficult questions'. That is what happens where I live. They - or your Dad's GP surgery - might also be able to tell you if there is a Carers' group or centre in your area because you could get more information and support from them.

There are a number of us here who have looked after our relatives in the last months and weeks so don't be afraid to ask specific questions.

It is hard to know what to suggest about how to support someone, because people are all different. You have obviously done well so far, so trust your judgement. Your Dad might want to talk about the past, or the future - or not. When the Palliative care starts, that team should explain more practical things to you, including how they will provide physical care if he needs it. It is a lonely time so do accept any support you are offered for yourself, not just help for your Dad.
Thank you so much.
Do you know if I will be able to speak to the palliative care team privately when I have questions too? Or is the palliative care teams focus all on the patient?

Also.. do you know how long palliative care usually lasts? I worry that anything could happen tomorrow/ next week/ in a month and I’ve also read that palliative care can last years.

Thank you
Hannah
Hi Hannah.

Link to NHS guidance on Palliative Care posted earlier :

Hi Hannah .... welcome to the canteen.

CHC / NHS Continuing Healthcare ?

Main thread :

https://www.carersuk.org/forum/support- ... inks-32532

Be prepared for a long read ... IF it proves to be of assistance , time well spent ... both for you and your father.

Just in cae it's need ... palliative care ... NHS " Bible " on this specialised subject :

https://www.nhs.uk/conditions/end-of-li ... it-starts/
I can only speak about my experience, so I hope others can join in.

Are you hoping those treating your Dad will be able to give you information, as well as support? If you do want information, it is also important to find a supportive place to get it, because answers can be really upsetting. My husband had made it clear to those treating him that he wanted me to have information about his condition and care. So I was able to speak to the Palliative Care contact and to talk to his Oncologist and GP about him. So if - and only if - you want to, you could try saying to your Dad that it would help you greatly if he allowed everyone to talk to you about him. This might work, as he probably wants to protect you and might be thinking he can best do that by keeping details from you.

However, if he chooses not to do that or you do not think it is right for you, I also know that with my Mum the local hospice definitely took the view that it was there to support the whole family. They had a drop-in session where anyone could go and ask questions - not about Mum specifically, but definitely things about her condition. We could go to them while Mum was still living at home, so it's not just for relatives of in-patients.

You should be able to get care for yourself from the hospice (or a carers' centre) as well. Round here it offers relaxation sessions, carers' groups and listening/counselling sessions.

So ask - be pushy if you need to - ask your Dad's GP for a contact telephone number or telephone Social Services and explain you need to know where carers can go to get help or information. Do you work for a big organisation? If you do, they might have a welfare service you can go to as well.
My mum was housebound for over 30 years, dad cared for her until he had advanced prostate cancer. His GP (same practice as me) wouldn't tell me anything, although he knew I was already caring for my son with severe learning difficulties, and I was disabled after a car accident myself. I rang a cancer advice line, then called BACUP, but I think they've amalgamated with MacMillan. I explained that I needed to know well in advance what was going to happen as I was going to have a lot to deal with. They asked me what dad's symptoms were, and they told me that he probably had only 6 months to live.
I then went back to the GP again, who was then much more forthcoming. He said whilst he couldn't talk specifically about dad, generally speaking what I'd been told was about right.
He also said that dad would be able to do most things, then one day would take to his bed and not be able to get up again without a lot of help, about two weeks before he died. This was what I needed to know. Dad had lots of help during the last 6 months from the hospice, and had some blood transfusions too. His last two weeks were spent in the hospice.
None of us know how we will feel after being told we have a terminal illness, but you need to prepare yourself. Definitely get a copy of his health insurance, as sometimes there will be special provisions with a terminal diagnosis. Some life insurance policies (does dad have one?) also pay out in advance of death when a terminal diagnosis has been given.
PLEASE answer my earlier question about whether dad owns where you live, or rent it.
Hannah - it sounds like you're doing really well. I think the most important thing is to be there for your dad as much as possible. So this may mean taking a lot of time off work.
Another important thing to remember is sometimes when a person is near the end they can't always communicate, so it's really important that he is given enough pain relief.
Finally and really important - make sure that you look after yourself. It's very easy to forget to eat and sleep when you're caring for a sick loved one.