I’ve just become a member and thought I’d make a post to reach out. I am 23 and I am the next of kin for a friend who is chronically and terminally unwell.
My friend has no support from her family due to conflict and abuse. I have known her for about 2 years but closely for about 14 months now. As it stands, the prognosis for her is not good and her quality of life is very low. She is generally admitted to the hospital about twice a month, usually for a duration of a few days while they get her bloods to a level that (for her) is deemed ‘stable’, but which for a healthy individual is usually near-fatal. I suppose her body is so used to functioning at such low levels that it has somehow adjusted. She cannot eat or drink and has two tubes in her to feed her and give her medication, but her pancreas has stopped functioning so near to no nutrition is absorbed, meaning her weight is extremely low and will never be at a healthy level.
When she is admitted to hospital, her benefits are suspended and when she is discharged it takes up to a couple of weeks until they are reinstated, but she is usually admitted again by this time. This means she Never really has any money to live off and of course is unable to work.
Overall, I am struggling a lot. I am struggling to know who to turn to for help, I am scared of getting to a point where I break down because of the stress and pressure. I feel a huge amount of guilt for not being able to provide her with the financial help she needs (although I’ve spent probably over £600 from my personal funds in the past 6 months to support her). As far as I am aware I do not qualify for carers benefits. My own personal mental health issues are coming back full force after 3 years recovered. I am struggling to focus at work and panic attacks are more frequent.
So that’s where I am at the moment. I have support from my wonderful girlfriend and friends but it’s such a tricky and unusual situation to be in and I suppose I’m just reaching out to those in similar places. I don’t know who to turn to…
Annie, I was dismayed to read your post, that you are not getting any help at all. Ask the GP to arrange NHS FAST TRACK Continuing Healthcare, all the care she needs free of charge. Either at home or in a nursing home.
Is she claiming Attendance Allowance?
Are you able to work? If not, you are probably entitled to Carers Allowance.
I know this is all horrible to think about, but has she given you Power of Attorney, and made arrangements for her funeral?
There are special rules for terminal benefits claimants, can be fast tracked:-
To make sure there is money available for the essentials bills etc.
It is very difficult, I went through this a while ago and you need good support, have the Hospital advised, have you talked to PALS, all hospitals have to have PALS Patient Liason.
Has your friend made a will and given instructions about the funeral arrangements sorry not a very cheerful subject but has to be talked about.
Again PALS or the Hospital chaplain will be able to help.
Have you considered Continued Health Care, again special rules for terminal illness, can be fast tracked by the GP to provide the extra care needed.
I forgot to mention that if the GP requests Fast Track Continuing Healthcare (CHC) it should start within 48 hours.
You are far too young to deal with all this on your own.
Is there a hospice in your area? When my dad was terminally ill, he had all sorts of services arranged for him at home. Again, the GP or hospital should have referred your friend already.
Has anyone told you how much longer she has?
Does your friend struggle to sit up in bed, or to stand?
If so, then ask Social Services or the hospital to arrange a hospital bed.
It can be provided on loan, for as long as your friend needs it.
When you are poorly, it’s so much easier to be able to sit up with the push of a button. (I’ve had major abdominal surgery!)
Hi there, thanks so much for your reply
I spoke to her and she says she is receiving some fast track help but generally is quite closed off about it all which I find difficult - do you know if I’m able to know more about whats going on by talking to her doctors/nurses? She also has not specified the welfare help she receives, so I’m struggling a bit to know the extent to which financial aid is really crucial. All I know is that I cannot continue to support her financially because I simply do not have the funds
Unfortunately the hospital do not allow her many facilities to use at home - she has to even sneak out with a drip stand on the last discharge (to hold her feed and medicines while she sleeps). The OTs say that the demand is so high that because she is ‘stable’ (which in my eyes is not true in the slightest), they don’t have the funding.
She is 31 years old and has been chronically ill since she was 13…so a very long time…! I believe she does have a social worker. I think it is hard to tell whether she is hesitant to accept help from health and social services because she is yearning to hold on to normality. I understand this completely but it ends up falling on me when she needs help-I truly don’t want to become a carer more than a friend and that is my fear! I also have a lot of guilt about it all. I feel mean for feeling like the weight is too much to carry. I feel mean for being worried about how i’m going to carry on because my brain tells me that it should be unconditional. I don’t know if anyone can relate, but its a bit of a mental struggle right now She is also not wanting to listen to the gov’s advice about not going outside. I have stressed the importance of it (she is in the very high risk category) but she claims she needs to keep herself occupied. I am struggling to get through to her and the weight of this responsibility is so much.
I’m going to sound a bit tough now. She is responsible for managing her health and happiness. If she chooses to go out, then she must take responsibility for her own actions. It sounds like she is manipulating you for her own ends. She is entitled to lots of help and benefits. From this moment on, your purse is LOCKED!
She is expecting you to do a you all sorts of things but not sharing essential stuff about help, health or benefits with you.
Stop sacrificing yourself.