Carer of terminal patient
I am caring for family member that is terminal with this awful disease.I have been really strong throughout but just had mini meltdown alone,I have nobody that understands
Hi eekk, do you and the patient not have support from one of the cancer support agencies such as Macmillan. They give support to cancer patients and their loved ones and do more than just a nursing role in palliative care situations etc. It might be worth giving them a bell, there is also the hospice network etc.
Wishing you the very best,
I got upset at 8.10pm they closed at 8 and no I never was given any info or numbers just sent home to die
I am so sorry that this has happened it is terrible if you and the patient have not received any sort of palliative care package and support. The hospital, GP or local social services should have all been informed to give you a support package for when your loved one came home. The BLT was at one time involved in a big push for better end of life care support for those affected by liver disease - their helpline might also be able to provide guidance though they too will be shut now.
I would get onto Macmillan when the lines open again in the morning and also see what supports the GP etc. can put in place. You must not be left alone to deal with someone who is dying from this horrid condition. Not good for you or them.
Let us know how you get on.
In my thoughts.
Where do you live? There’s are tons of caregiver support groups on Facebook. As well as liver disease support groups. If that helps?
I do not use fb and my family member did not like the idea of nurses/strangers so said they are ok and I do it alone
I’d consider joining social media, seriously. You need support. These networks help.
So the rest of the family say no to external support but you are then left to cope alone. Not good at all. You have to look after yourself in all this too and even if that is just speaking to Macmillan or whoever without them stepping in to support your loved one then do that for you. You'll be better placed to help your relative if you are supported.
Get some external help, if only for you.
Cyber hug coming your way.
Oh my love, I totally agree with Katie. You need support from Macmillan’s or whoever but also you need your family to realize you need help. You cannot deal with a terminal diagnosis for your loved one alone. They must help you out so you can have me time. Get away for a few hours.
When you need to let off steam please come on here. We understand!
Thanks isabelle there is no extra family support really and definately no me time.
I think you're saying that it's your loved one who doesn't want outside help. Do you have any family who can take up the slack? It's terrible for your loved one to know that they don't have long left but it's unfair to you that you must carry this burden alone. You're the one who will be left behind and you will need all your strength to carry you through the tough times when you're alone. I hope that you have someone you can talk to and help you emotionally as well as physically. 💓🌹
No I have nobody so thankful for this forum
One phone call to Macmillan won’t hurt and you’ll be amazed at what’s available, my one phone call eased my stress and I really do believe that the removal of said stress played a big part in my recovery.. diagnosis of cancer 09/11/16
prognosis dead in 11 months
Tumour size 18cm by 12 cm
SIRt procedure May 2017
Yesterday scan results, no cancer !
Doctors amazed woo hoo!!!!
I'm not sure where you live so I can't tell you which carer service is best for you to contact. Katie is right a lot of people get a lot of support through Macmillan not just direct care.
Do you get much time away from your caring? It is important To get some because no matter how much you love the person you care for, you, and they, need time where you can do something for you and where possible they have some time to do something for themselves. If nothing else it gives you something to talk about with each other.
Do you have friends who can sit with your loved one and give them some special time so you can go out to a support group or do something just for you?
I have been a carer for one member of my family or another for nearly 50 years, I'm only just 60. I also work supporting family carers and have done for over 30 years in both paid and unpaid work. I also have care needs of my own.
It is important to have quality time with the person you are caring for not just caring time. Caring all the time can spoil that. I had a really bad day on Wednesday. It meant i needed a much higher level of care than normal from my husband. I hated it and it meant he couldn't go work. Fortunately for me I wasn't due in to work that day, but I still found it hard the level of care i needed and I was a bit less cheerful and kept saying sorry. That got to him more than the additional caring.
Having a melt down isn't unusual. What it does show is your need to also care for you. Remember the Samaritans are there for you to talk to. They are not just there for when people want to self harm. Meltdowns always happen at the most inconvenient times. I sometimes think carers services should run a support line between 8pm and 8 am for that reason.
Please look after you. it feels like everyone expects the carer to be strong all of the time. But that isn't realistic. You need time to recharge your batteries and I hate to say this, but you also need to keep some networks for yourself outside of caring. Doing that isn't selfish it is being sensible.
So sorry to hear your story eekk. It is understandable that your loved one does not want strangers around and you will be so busy caring that you cannot see the wood for the trees, but it is an incredible tough time for you both. My mum had a Marie Curie nurse who came to the house for her and she attended the McMillan centre for appointments and they are all such lovely caring people. They all shine with goodness. Please ask your GP to put you In contact for some support. It’s the hardest time, both emotionally and physically and you have to look after yourself as well, which they will understand completely. I was recently told by another lady who has a sick husband that the emphasis is on supporting the carer....so I am sure that you only need to speak up to someone you will get help. Good luck. JX🙏
It can be incredibly stressful caring for some one who is so ill.
Have you considered contacting CarersUK?
Here is the link;
Take care of yourself,
Sometimes life is crap.
If you are unable to get the support you need outside and have no friends to turn to (people really like to help when asked), all you can do is grit your teeth and know that it's not forever.
They say it's a privilege to help someone through the end stage of their life but I don't think it feels like it at the time.
There will come a stage when a hospice or hospice carers in the home will no longer be a choice you have to make, it will be essential. Some of your load will be shared then.
You will look back on this and know you did everything you could to help.
I agree with what everyone has said on here. It must be so hard for you. I think Samaritans are there 24!7 so you can talk to them day or night. Sending all my love to you Lynne xxxx
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