22 year old Carer - lonely

New to Carers Connect
1

Hi everyone,
I’ve just joined and id like to know if anyone has experienced similar responsibilities to me & how to support a parent.
My dad has had a very rare form of cancer for 11 years and has been very strong! I am 22 years old now and when I was 16 my mum walked out on my dad and I. It was very scary for many reasons at the time, however we had my Nan (dads mum) with us who attended all of his hospital appointments with him and kept him strong. Unfortunately she suddenly got cancer and passed away 18months ago and since then it has been just my dad and I.

I try to visit his appointments with him but he will often not tell me when they are because he feels guilty if I miss time off work to attend hospital visits with him. This is hard because I don’t have any oversight on how his condition is progressing. I try to make sure he is always eating to stop him losing more weight, encourage him to take his pills and am there for him on his “bad” days & good! (FYI I live with him)

Recently, my dad has shared with me that his condition is rapidly getting worse and he showed me his doctors note to say that palliative care will start from January 2019.

Firstly, I don’t know if how I’m supporting him makes me a Carer or not - can anyone shed any light on this?
I just want to make the end of his life as positive as possible - does anyone have my ideas how to make someone’s last few months as happy as possible?
When he does leave me I will be all on my own and I’m very worried and scared, I’m not ready for him to leave. This affects how I communicate with him because I try not to be emotional around him.

If anyone out there has any ideas to support him and how I can do my best for him during this time please let me know. I feel very lonely.

2

Hannah,

Welcome to the forum. We will help and support you as long as you need us for.

Dad is, I suspect, trying to deal with this himself, but may not realise how you are feeling. You will need a LOT of help, I’m dismayed that none has been offered.
Ask dad’s GP to refer him to your local hospice. My dad was supported in his own home for a very long time, when he had prostate cancer, this may be an option for your dad too.
Also ask dad’s GP to make an NHS Continuing Healthcare referral (look at the CHC Framework).
Has dad talked to you about his finances, do you have Power of Attorney sorted out? Has he made a will?

What area do you live in, don’t say exactly where, just the county will be enough, then if there are other members near you, then might be able to say what services there are in your area.

3

Hi Hannah … welcome to the canteen.

CHC / NHS Continuing Healthcare ?

Main thread :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-nhs-continuing-healthcare-chapter-and-verse-under-one-thread-guidelines-and-links-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 :
What end of life care involves - NHS

4

Hi,

Thank you so much for taking the time to read my post and respond to me.
This may be a silly question… I have not had contact with my dads doctor apart from the appointments I’ve been to. I do have his email address but am I able to email the doctor directly or must it come from my dad?

Also, my dad actually (luckily!) has a very high level of private health care which he fortunately took out before he got ill. Does this affect the NHS CHC framework? I had a look but I can’t see if private health care works differently.

I am aware that he has made a will and I know where I stand with receiving finances.
He has not mentioned the power of attorney, where do we go to sign this off?

I live near the border of Surrey/ London.

Sorry last question… do you think from what I have said so far classifies me as a career? Some people have told me that I should register as a Carer but I’m not sure if I should because I do not need to look after him 24/7 or have nearly as many responsibilities as some amazing Carers on here.

Thank you very much again, I really appreciate your help.

5

Hannah, We were typing at the same time!

You most definitely ARE a carer, and have been for many years!! As you are working you won’t be entitled to Carers Allowance, but you will be entitled to some support from Social Services.

You can email your dad’s doctor, but he will not be able to disclose any information, unless dad gives his permission, but dad’s GP must listen or read what you say, and consider what to do.

CHC is free without any Means Test, unlike Social Services care. It’s brilliant that dad has got private health care, but has he shared what he is eligible for with you?

Ask him to arrange a POA, ideally with his solicitor, who you can then get to know before the later formalities are required. It takes THREE MONTHS as a rule to get this done, so don’t delay. (Having said that, once he’s signed the form, it clearly shows his intentions.

I suggest that you ask your GP to either arrange counselling for you (which should be free) , or recommend a private counsellor, which may cost up to £30 an hour. My Social Services department has recently agreed to fund private counselling for me, as part of my Carers Assessment.

Ask your Social Services to arrange a Carers Assessment for you, and a Needs Assessment for dad, this is like a passport for services he will need.

Does dad own, or rent his house? This is an incredibly important question. Once we have the answer, we can explain how this will affect his future care.

6

Hello Hannah
Welcome to the forum. So glad you have found us.
I won’t be very much help to you, for which I am sorry.
However, I do know there is fast tracking continuing health care. This is for people who need palliative care. It’s really worth mentioning to your dad’s GP.
What an amazing daughter you are.
Sending you a big (((( hug)) and I know others will be along to offer advice. I can see that Bowlingbun has. She has been a power of strength to me as is the forum. Keep posting.

7

Thank you for replying so quickly.

I actually am not aware what his health care covers, I will definitely ask to see it. Is there anything important that I should check is covered?

I will also be sure to arrange a POA meeting & a Carers assement & needs assessment. I’m so thankful for your help, I was not aware any of this existed previously.

Dad owns his house.

Thank you
Hannah

8

Hello!
Thank you for the pointer of fast tracking CHC.
And thank you so much for your lovely comment, that means a lot.

9

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.

10

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.

11

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 :pray:t3:

12

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

13

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-life-care/what-it-involves-and-when-it-starts/

14

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.

15

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.

16

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.