It feels like a lifetime ago, it’s sad that such a horrific time helped anyone, but if it helped
@la lucia, then at least something “good” came out of it
Sorry, but nothing will induce me to read back at the moment
@totallyconfused, so I can’t refer you to a page
However.
@la lucia is right, find out what you can about what might be available in your area, do it while you have time to think, coz when you are in the middle of it, you can barely think, never mind plan
My situation was different, or I hope it wasn’t the norm. Mums GP failed her, he didn’t change her meds on discharge from the hospital following her stroke & the few bleeds on the brain, became catastrophic
I believe there are some “core stages”, but the time to get to them, or how long they last is different for everyone. Some people start to talk at six months .. for others it’s at six years old. Dementia is the same. My mum was “early stages” for three years, then went through middle & final in seven months. She was continent to the end, but tired after a mere twenty minutes of talking.
Up until her fall in June, Mum was still feisty, eating reasonably well, I wasn’t allowed in the bathroom with her & she used the loo without any help
That final fall, or falls, wiped that out. She gave up. It was a step too far. The Consultant told me she was coming home to die ... she needed me to understand what I was letting myself into.
I knew it was the end while she was in hospital that last time. I didn’t think she’d make it home, but she pulled everything together for one day & they agreed to discharge her. She was one determined lady my mum
If you think it’s that time for your mum
@totallyconfused you can ask her GP to visit & make an assessment. If the GP believes it’s “end of life” (the GP thinks that’s within six months), then the GP needs to make a referral to the CHC for funding. Push it. Make sure the referral is done immediately
If it turns out to be wrong, CHC is withdrawn & things carry on as before. Don’t worry about getting it wrong, it can be reinstated if things deteriorate later.
Mums GP didn’t realise he needed to make the referral ... I had to keep phoning & pushing . that delay cost financially and emotionally
Once CHC is awarded, if your mum has carers in place, tell the agency & ask them to arrange night sitters (you can have up to three a week ... no one is going to tell you that ... you have to push for it). The agency get paid by CHC. They will push for you, it’s in their interests. Let them take the strain
Hospice care at home can be amazing. The first night mum stopped breathing I was freaking out. Eleven at night, on my own, I called them. I cried down the phone, they listened. Unfortunately there was no one available to come out. That was the only time there was no one available, but you need to understand it can happen. Get numbers of friends or family who can (and will) drop everything at a seconds notice and come to you. You may not need to call, but it’s reassuring to have the list
You may need to be a bit “canny” to get things done, especially if you come up against anyone who decides you don’t know what you are talking about ..
Two days before the end, I asked the district nurse if they could fit a catheter, not because mum was incontinent, but because her fractures were pulling apart due to her severe weight loss, making getting on and off the bed to use the commode agony. They refused. They said mum didn’t want it
So. I told them mum needed the commode. I couldn’t do it solo ... so ... help yourselves ... I’m going for a coffee
Five minutes later they told me they were fitting a catheter.
Every person I’ve spoken to, heard talk etc has said the same thing. Mum is not leaving while you are in the room. Maybe dying is a very personal private thing, maybe it’s a final attempt to spare the ones they love, whatever the reason, you can almost guarantee they will hang on until your bladder can’t
Mum knew she was at the end. She even asked me, “Tell me honestly Sam, am I dying?” I wanted to lie. I wanted to sugar the pill, but I told her the truth and she thanked me for my honestly. I hated myself, but I knew she knew, so I wasn’t telling her something she didn’t already know. How long she remembered that conversation for I don’t know, but I will relive it all my life
I’d heard many times, tell them you love them, tell them you forgive them (sorry couldn’t do that one), tell them it’s ok to go.
I still needed to eat, go to the loo, get things ready for carers, wash the sheets ... so I was in and out all day long. Every time I came back in I was cheerful. Every time I left I said “I love you” and that if she wanted to go have a G&T with dad, that was ok
I told her not to worry, I wouId look after my big brother (all my life lol), that we wouId figure things out and she didn’t need to worry. I told her we knew she loved us
It doesn’t really matter if you believe it, you just need to say it. That’s what everyone told me. It’s what I did. Five weeks after being discharged from hospital, I walked back into the room after getting a coffee and my mum was gone.
There is nothing easy about the final stages at home. It is eased by making the carers take your side, refusing the ones that fight you. Take every second of support offered and ask for more. This is not the time to be proud. This is the time to beg and cry
I hope that’s not too harsh, I really hope it’s not upset you