Supporting end of life care, need help.

[MandarinDentistTiger]

My DF has untreatable cancer. They have moved into my sister's home.

His health has consistently and rapidly declined. He was able to walk in short distances, no relies on a wheelchair.

Very confused, not eating, lost a lot of weight and is dosing rather than sleeping.

He is falling out of bed and is fragile. He needs support 24 hours.

We have been told he may not have hospice care. This week carers have been arranged in the morning to help him wask and dress. The situation is at breaking point.

We just didn’t seem to have access to MC.

My Dad died from terminal cancer OP and getting support was like pushing water uphill with a fork. I found the best help came from Oncology when a tearful phone call to them got me transferred through to the specialist palliative care nurse. She made the world of difference but even with good support and care, it was still a horrifying thing for Dad to go through. He had a month in a local hospice as his symptoms were so difficult to manage and then was transferred to a nursing home where he died 3 weeks later.

I'm so sorry you're in this situation. It's relentless and exhausting

Just to add, we are currently using the option of end of life care in a nursing home, rather than being at a hospice or hospital, and it has (mostly) worked very well so far.

Macmillan can be really helpful but they get a lot of calls so support can be slower . Sometimes it's quicker contacting a charity specific to the type of cancer the person has . They can guide you in what support is available.
The Gp/district nurses can get what you need in place but like a few other have said you need to shout the loudest sometimes.
The thinking on not putting sides on beds is that if confused the person might try to climb over them and be hurt more . You know him though so it should be a risk assessment based on his needs .

Sorry, what’s CHC?

CHC= continuing health care. It's usually approved very quickly for end of life patients.

The problem is, we have no idea what is possible, never mind if we can ask for it.

@MandarinDentistTiger I am sorry you are going through this.

The key thing in relation to possibilities for end of life care is the medicines available to make the person more comfortable. The whole object is to make the dying process as comfortable as possible for the patient.

Typically when someone is in the end stages of their life (sadly I have been through this with my relatives too many times) the body slowly shuts down - it can be over a few days but it can last weeks. They move slowly from conscious to inert/ limp to semi conscious to unconcious to death. Their breath gets slower and slower and shallower and organs stop to work.

The big things your DF may need in terms of palliative care options that you can explore or ask for (not everyone will need all or any of these depending on how quickly death comes) :

1. regular repositioning once they are immobile in bed to avoid bed sores and skin break down.
2. pain relief - morphine typically which can be delivered by injection as a one off or when needed. If the need becomes too frequent you can have a syringe driver - which is a line connected to the body via a cannula/needle that delivers a constant slow flow rather than repeated injnections.
3. medicine to control lung secretions. This is for the patients comfort but also better for those having to listen to rattling breathing and a person struggling for breath which can be horrific to listen to. We all get lung secretions that if you are young and healthy move out of the lungs normally naturally and by coughing sometimes. As the body shuts down this stops working so you get phlegm accumulating. In the early stages it can be suctioned but later is it better to stop it building with anti -secretion medication. This can also be by injection and later via a syringe driver.
4. Depending on his condition and what is going on in his brain - anti-seizure medication.
5. Mouth care - breathing through the mouth dries the mouth so there are special mouth swaps you can use to moistne the mouth.
6. Oxygen if applicable - for comfort so they don't die suffocating/struggling.
7. IV fluids - conventionally, once someone is end of life they withdraw fluids but that is obviously dehydrating. The official line is that a dying person can't feel dehydration but my own experience from what I have seen is that this isn't true For comfort, depending on the case a low dos of fluids may make them more comfortable.
8. IV antibiotics as a pallaitvie not curative measure. Eg. inhalling lung secretions can lead to a lung infection which can be a nasty way to die and this can be prevented.

Very sorry you are going through this. Any situation has advantages and disadvantages.
An advantage of being at home is that your DF is in a familiar environment but also you are in your own home so don't need to go anywhere to sleep/eat/change your clothes. They will also have the privacy of their own home as will you. If the loved one is in hospital, you will find you want to be there all the time, hoping you are with them at the moment they die. This process like I said can take a long time - so you can't indefinitely stay by the bedside without some sleep however minimal, having a shower, getting changed and so on. If you are far from the hospital this can be a disadvantage. similarly they are likely to be on an open ward with all this going on behind a curtain with other strangers around. It's not very private unless you can get a side room which is rare.

On the other hand advantages of hospital is that all the medical care is right there and very available, with expert drs and nurses including palliative care experts. Plus when the death occurs, you don't have to worry about organising removal of the body and seeing it carried out. You can sit with your loved one for as long as you like and then leave.

Death is horrible and sad and there is nothing good but making someone comfortable will give you comfort long term. Best wishes to you.

They don’t use sides any more as confused people often try to climb over them.

@maverickfox
They don’t use sides any more as confused people often try to climb over them.

This is nonsense. It just depends on the person. They have Fall Risk beds with bed rails that are alarmed in the matress so if there is movement, weight change the alarm goes off.

Hospital beds in geriatic wards mostly all have side rails.

A side rail + an alarm is much safer than someone being able to just roll onto the floor.

They do use sides, it’s just a specific risk assessment is needed. The resulting risk of a dying ,barely mobile person rolling out into the floor is generally higher than the risk of bed rail injury whereas for eg. to an elderly person with dementia or UTI attempting to climb out of bed, the risk of side rails may be higher. The beds supplied to our end of life patients at home would on the whole have side rails.

End of life was horrific. Thank god for the NHS and the support they offered.

There was no hospice care available. I have no idea how we managed 24/7 intensive support for months. We had many years of caring responsibilities and were at breaking point before this fast decline.

Terminal agitation was extremely difficult. I wish I understood it more at the time. I felt enormous guilt that I wasn't advocating for the best care and medication. People have kindly shared their experience. I am now more at peace that nothing could have been done.

I provided essential support at an emotional and financial cost to my own family and DC. There was nothing else I could have done. I did my absolute best.

Thanks for all of your kindness and advice. 💐

I'm so sorry for your loss OP. The last few days were just horrendous with my Dad and no drugs helped the agitation. The nursing staff were so blase as I guess they're used to it, but as a relative it's deeply troubling to have to watch your loved one go through. And stays with you for some time.

Wishing you a kind journey through your grief

Ridiculous post

@MandarinDentistTiger Sorry for your loss. This is all that matters:

There was nothing else I could have done. I did my absolute best.

You can look yourself in the eye in a mirror and know this which plenty of people in your situation will not be able to do.

Grief is tough. Day at a time.