I am new here so any advice would be welcome.
My father in law (nearly 94) has been living with us for 4 years. He has always been really active and able to look after himself until about 6 weeks ago. He has terminal cancer and is going downhill quite rapidly. My husband and I are caring for him at home but he is now weak and unable to do anything for himself.
Our GP has been very good and came out to see him and arranged the community nurses and palliative care team to contact us. Contact has been made, but so far no help as such. We had a hospital bed delivered the other day, which is good but we have no way of lifting my father in law. He is also struggling with all sorts of things now. My husband is sleeping on the sofa so he can be near his father, but we are really struggling when it comes to moving, feeding, washing, toileting etc. We were told that we should have been fast tracked for a care package, but I have no idea what that is or what to expect. Any ideas?
Thank you for reading,
Welcome to the Forum , its a safe place to share your concerns and get some help
Im sorry that you are experiencing the delay in getting the help that you and your father so desperately need .
Its a shame but nowadays you have to be ‘assertive’ and follow things up or things can get lost in the system .
I should call the GP again , and the Community support team , perhaps look into help from a local hospice .
Can you fund some private care while awaiting for the care package that is obviously urgently needed
Ill come back to you with some resources to try
This should give you the information you need:
The application for my mother went in on a Thursday - CHC fast-track was granted on the Monday. It should pay for all care costs.
welcome to the forum.
I agree with Penny, your father-in-law needs continuing health care (CHC) funding now and that can be fast tracked as he needs end of life care. This will enable him to have free care to help you with all the tasks you are understandably finding difficult. Check out the website from Penny this weekend and contact the GP on Monday, I realise researching at a time like this is difficult but unfortunately some GPs are less than knowledgeable and you may need to provide them with information on fast track CHC. Also, as Jennifer says, sadly it is often those who shout loudest (and are most persistent) who get help first.
Continuing Healthcare covers either care at home or full time Nursing Home care.
Now is the time for you and your husband to decide if it is realistic to care right to the end or not.
I know it’s a difficult decision, and sad that you have got to this point without any proper support.
To help you, Google “Signs of Dying” which explains how the body slowly and gently slows down.
If dad is in a lot of pain, a hospice will be able to respond immediately to his need for pain relief. They were brilliant with my dad in his final weeks.
TELL the GP to make a FAST TRACK application, and that means all the care needed arranged within 48 hours.
Now is also the time to consider which funeral director you will use when the time comes. Then you can investigate costs and choose the most appropriate one.
I have lost my parents, my in laws, my sister in law, brother and husband. My thoughts are with you. Some decisions are worse the longer you delay at this stage of life. Be kind to yourself.
Thank you all very much for you advice. I will definitely chase things up tomorrow.
We should be having a visit from the a nurse from the local hospice either tomorrow or Tuesday, but I will chase that up too. I do understand that care resources are stretched at the moment but I just need to make sure we are not forgotten. Thanks for your support.
Who is giving you the “resources are being stretched” excuse?
Father in law, you and your family have an URGENT need for care and support, this should be a top priority.
The rules say CHC MUST be provided within 48 hours.
Has the doctor given you an indication of how long FIL has left?
Please be brave and read the “Signs of Dying” articles on Google.
They are written for the lay person and explain helpfully what is happening and how to support someone.
I only found them, with tears rolling down my cheeks, when the last of our four parents was dying.
I wish someone had told me about them when the first parent was dying.
Thank you for your reply.
We are aware of the signs of dying and things have deteriorated over the weekend. We called the outside hours number when my father in law was distressed, but he calmed down before anyone called back. All was ok until about 4am when he woke in a wet and dirty bed. My husband and I struggled to get him out of bed and washed. The poor chap was distraught. Of course then I found that the sheets I have don’t fit the mattress we were given! I had to scramble about looking for an old double sheet to put on the bed. He is in bed now, but our backs ache and my husband is so distressed to see his father this way. First thing in the morning I will be on to the community nurses and the hospice again. I have to get something in place today.
Sorry for rambling.
Google NICE Guidelines Carers and you will find a section about what should be happening.
Then armed with this information contact the Practice Manager at your doctors and ask for Fast Track to be applied for TODAY!
Sorry to hear you all had a rough night.
Louise is your FIL wearing incontinence pads? My friend used puppy training pads on her Aunt’s bed for an extra layer of comfort and protection. They are like a large square pad of disposable nappy type material and can be placed under the persons bottom and surrounding area. They are cheaper than the ones for humans but do the same job.
Let us know how you get on today. Don’t take no for answer.
Oh Louise, how awful for all of you. I would get on to his GP immediately and if he’s not available, the Practice Manager.
Fast Track NHS Continuing Health Care will be available (I got it for my Mum within a week and not too much hassle) but it does sound to me like your FIL would be better off in a hospice to be honest. This will still be available in there but should be rapid. You can then rest assured that he will be clean, comfortable, warm and properly cared for in his final days.
Please let us know how you get on and be assured that we are thinking of you.
Thanks again for reading.
We thought Hospice at home care, meant that. But the nurse at the hospice today said they don’t do care, but look at the symptoms. She will come and assess the situation tomorrow. I don’t know what that means because she won’t be offering care.
The community care team forgot to refer us for the fast track thing, but will send a nurse out tomorrow to assess the situation…
It looks to me as though my husband and I will just have to grit our teeth and get on with it.
Louise - good job you chased up the CHC. That’s terrible.
Make sure the nurse follows the protocol for ‘Fast track’
Fast-track assessment for NHS continuing healthcare
If your health is deteriorating quickly and you’re nearing the end of your life, you should be considered for the NHS continuing healthcare fast-track pathway, so that an appropriate care and support package can be put in place as soon as possible – usually within 48 hours.
If the hospice don’t provide care at home and only manage symptoms (such as pain levels etc) then your options are using the CHC funding to pay for agency carers or a hospice bed or nursing home bed.
Louise, it is the responsibility of the GP, not a nurse, to make a fast track CHC application. Ring the GP Practice Manager today.
If you look at the other information I told you about, you should see that they are supposed to have done all sorts of things, especially an end of life plan. You can complain to the CCCG about the GP’s lack of action.