DF at end of life

[kissmyfatass]

My DF is receiving palliative care. He has a life limiting illness. He’s so unwell and weak and my poor DM is doing everything for him
i help where I can but it’s mostly on her.
seeing them both suffer is breaking my heart.

Hes barely mobile and we have to lift him from the bed to a wheelchair but he mostly just sleeps.

I feel like I’m playing a cruel waiting game and that every day will be his last.

He’s drugged up on morphine and MST but then he can be awake and alert for a while.

My DD is going to be heartbroken when her Bampy goes and I’m dreading having to tell her.

I have been in this situation in the role of wife to my late OH.
On the subject of your child, my GC took the death in their stride ... they were of course sad, but they were accepting. I think this is because they were involved. I continued to have two of them with me two days a week while my DD worked so they witnessed his decline .... and would tell me when his catheter bag needed emptying... all very down to earth and part of life. I have abphoto of several of the the GC with him when he was unconscious ... they wanted this so I did not make an issue of it.
They saw that his life was coming to an end and that it felt right that he should go.
I am sorry you are all facing this challenge. It is so hard I know.

He’s got an air mattress already. My mum cooks for him so she doesn’t need them doing that. He’s barely eating anything anyway. He doesn’t have a catheter either. He has a proper urine bottle and a commode in the bedroom. Though he mostly misses the bottle so the bed is changed twice a day. Mum has to get him out of bed to use the commode.

Carers will wash, dress and change him. They will move him to prevent bedsores. They can help with feeding if necessary and they really do take the strain. Palliative care nurses will administer medication. Contact his GP, adult social services, OT. You really need to arrange do support for the next few weeks or months. No one wants care but there comes a time when you need to accept what's on offer. Talk to your dad again and get things moving. Best wishes, it's such a difficult time x

There may come a time when he can't make it to the commode. You need a care plan in place sooner rather than later.

It is an awful situation my DF passed two years ago and we tried to keep him at home for as long as we could but it soon because obvious that it was too much. My DF had to go into a hospice, the care he received was amazing and he got to pass with far more dignity than he would have had we have kept him at home.

Ik so sorry you are going through this.

Thank you all for your advice. Hopefully when Occ health come out to assess they’ll realise how bad it is. I hadn’t thought of all the other things carers can offer. I’ll go over tomorrow and Tuesday when the palliative care and COPD nurses are due to see what they’re saying.

I hate saying I’m struggling when it’s my mum that’s suffering too. I’m trying to be there for her and lighten the load as much as possible but I don’t know what else I can do.

He does need carers, that is clear. Once he cannot get to the commode then there will be bowel issues and his skin care is very important.

Surely his current toileting arrangements are not sustainable if he is wetting the bed and can’t independently get on to the commode

I’ve just suggested to my DM to put incontinence pants on him. She’s woken to a wet bed this morning.

He had 9 days in the hospice @kissmyfatass, and while it wasn’t perfect, it meant that my Mum and we could just enjoy time with him rather than be bogged down with all the washing etc. it was sold to Dad (who wanted to die at home) as 5 days respite care to stabilise him, and of course he outlived expectations ❤️. Please take all the help you can and let the palliative care nurse know how concerned you are about your Mum and ask about plan b options.

That sounds like the best thing for you and your mum. Looking after someone 25/7 is so hard.

I hope you & your mum are doing ok

This is exactly how I feel. My dad lives alone but has been admitted to the hospice for respite and to manage some symptoms. I've become his carer, although I have been put on a phased return to work which is adding to more stress as they make me feel guilty due to being short staffed, dad makes me feel guilty because I can't be there 24/7 and I naturally feel guilty not seeing my family. I now have to find a nursing home place, I know he will hate it and he isn't the easiest patient. I feel torn in other direction. We don't have a prognosis either and I just wish for it to end soon. He wants to die now. He isn't the same person either. He has become agitated and needed and vulnerable. I don't know what is causing this but it's making it harder to look after him as he isn't the same person 😥

Contact the GP surgery and ask to speak to the district nurse for advice . She can organise items such as a hospital bed etc . She would also be able to direct you to carers to help wash/ shower him .
I would also advise you to call for an ambulance if he falls . When he falls he could break his hip and by lifting him yourself you can cause more damage. Ambulance staff will check him for damage before lifting him . We nursed my mum at home with end of life care but we had district nurses coming in daily to do her medication in syringe driver so we could always ask them for advice .
im sorry you are all going through this .

I can't look after my dad in my own. Even with carers coming in. I just don't want to do it anymore. He's always texting for something or another, he seems completely oblivious to the stress he is causing me.

Little update. Carers started today and DF is having a hospital bed put in. DM isn’t coping with this as it feels very real that the end is near

I wonder how all that is going @kissmyfatass. Hoping you’re still getting support.

It’s all a bit rubbish TBH.
DF is barely continent now so Dm is exhausted with all the clothing and bedding changing. He’s up until all hours so are can’t go to bed until she’s put him to bed. Carers come early too so no lie in.
Marie Curie rang today and said they’re coming out tomorrow. What would this be for?

My guess would be it’s an assessment visit to agree his/your needs. Don’t hold back

I’m going to text DM first thing and tell her that. She doesn’t tell them how bad it is. She needs all the help they can give but says DF will refuse more than once visit a day. I’ve said it’s not about him she needs the visits more than he does

Can she have you on speakerphone while they’re there? Call her every 30 minutes or so until you hit the right time. This isn’t the time to be shy, even if it annoys them.

So Marie curie have taken over from the carers. Really lovely pair, they’ve spoken to my mum and been so nice. I think they’ve taken over as the nursing team don’t think there’s long left and wanted them involved to support DM.
They’ve said they can do overnights if DM needs them so she can sleep, again I suspect this is for when DF looks near the end and she won’t leave him alone.

I found this really interesting to read. I think I'll take the same approach to my older teenage kids and my dad dying. Thank you

Had an awful week here. DF refused to use hospital bed and sent carers away. DM was beside herself. Had a word with him about how it’s essential for him he uses the bed as DM can’t cope without the carers.

Yesterday his nurse recommended a syringe driver. That’s in now and he’s sleeping so is calm and comfortable. I don’t think he has much longer

My DF has sadly died.