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've been there. It's horrible and you have my sympathy.

I'm really sorry. I recently lost my dad.
What age is DD?

She is 13. DF has had rubbish health for a while. A stroke about 8 years ago really slowed him down.
Hes on oxygen pretty much full time but sounds bloody awful with his breathing coughing and wheezing

So sorry OP. Been there. Sending you (((hugs)))) x

Sorry you're going through this. I have with both parents and it's so hard and deeply heartbreaking.

Thank you all for your kind words.
its DM I feel for. She’s absolutely exhausted and he’s not the easiest patient He knows she needs a break from him but texts her constantly when she goes anywhere so she rushes back even though I’m sure here looking after him. Going to take DD over this morning and I’m trying to think of a way to get Adam out of the house for a few hours.

So sorry to hear this, going through the same with my DF. He’s still in hospital and today was hallucinating and jerking, so now wondering if the cancer has also spread to his brain. He wants to
go home, and we all want him to be more comfortable, but also desperately worried about how DM will cope. This is so hard x

@dibly I’m so sorry. Life is so hard sometimes.

I’ve had DM texting this morning so say she’s is pain as soon as she tries to move him and he’s refusing carers. It’s so frustrating his needs are too much for her now but he’s being so selfish. I’m annoyed at him whilst also being so heartbroken

That sounds impossibly hard, is there anyone you can call to get more help for your DM?

So I had a call from hysterical DM earlier he’s fallen and should couldn’t get him up off the floor
I have come over and had a heck of a job myself. It’s so difficult because he can’t help himself so you have to take all his weight off I helped her get him in the shower which was a nightmare. I’m trying to convince her they need help. I’ve said it’s caters or care home. She’s going to hurt herself trying to move him. I’m reasonably fit but I’m in my 50’s myself so if I’m struggling to move him DM has no chance now. I’m afraid to leave them alone now. Who should she speak to. Palliative care nurse, copd nurse or Drs to get help. I’m trying to be strong for DM but I’m breaking inside

I'm very sorry for you and your family. I would ask for a referral for an occupational therapist. They can recommend equipment to help your mother care for him, in a safer manner. Carers might insist on it as well.

Carers are not ment to lift patients, they normally use hoist or Sara Stedy from what I seen. But an occupational therapist needs to make an assessment and make a recommendation specifically for each person. Everyone is different and have different needs.

Occupational therapist are they ones that help, recommended and sometimes give information on where to get equipments to help patients stay longer at home. From my second hand experience (grandmother friend) an adult social service, social worker sent an urgent referral for an occupational therapist and they gave a recommendation and the family decided to hire a mobile hoist. This was before covid, so things might have changed.

@Bread121bread the OT came a few weeks back and they had a huge contraption delivered. It was meant to help DF off sofa into the wheelchair but he doesn’t have the strength to pull himself up on it. It went back.

id feel better if carers came in just to get him up shower and into his wheelchair or onto the sofa.

It was the district nurse who arranged funding for carers for my DF. Will they accept carers?

I spoke to the nurse today and steps going to get in touch with SS. DM can’t keep doing this

How’s it going @kissmyfatass ? We’ve been told my DF now has weeks, whatever that means. He’s still in hospital (multiple medical complications) but we’re hoping he’ll come home next week, although that’s when the new worries about Mum coping will start. And he’s scared of dying 😢. It’s like a living hell for everyone in this position, I veer between anticipatory grief, to wanting this to be over, to realising this being over means losing my Dad.

@diblyaw that’s awful. You have echoed my thoughts completely. I spoke to DF Friday while was sitting with him so DM could go shopping and have a few hours out. I’ve told him they have to have carers because she can’t cope. Thankfully he didn’t push back because I was clear she can’t do it. He didn’t push say he isn’t getting better which broke me

Just got to my parents. DM has told me DF won’t have carers here. I’ve just had a right go at him he reckons it won’t work for them I’m so frustrated. He says they’d need to be there all the time. They can have them 3 times a day ffs.

if DD wasn’t here I think I’d have just lost it with him.

I am so close to just walking straight back out again.

Struggling today. This will be the last ever Father’s Day I have with my dad.

How’s it going now @kissmyfatass? My Dad was home for 3 days but was so so ill that thankfully the palliative care nurse got him into a hospice, which was amazing care. Is that an option for you? Sadly my lovey Dad died last Sunday. Fuck cancer

@diblyIm so sorry. I’m glad your dad had that, how long was he in the hospice?

@diblyIve been over the last 2 days. Friday I was so shocked at his appearance, he looked at deaths door. I’d only been there Wednesday and thought he looked so much worse.

He was bloody awful to DM during the night Friday so she was so upset yesterday, he hasn’t a clue what he’s saying half the time but she can’t help but take it personally. The COPD nurse came Thursday and said she come again Monday but the Palliative nurse is coming, I’m a bit concerned that she was coming back so soon. She’s told DM to let him have oramorph as often as he wants now which to me means just keep him comfortable and fill him with morphine I had to tell DD he won’t be here for Christmas when she asked me this week.

I don’t know about the possibility of Hospice care, nothing has been said. I really don’t think he should be at home though my Dm literally does everything for him.

SS have rung DM as nurse referral them for carers. They asked what she does and what he does for himself. Which is only eating and drinking. That’s it. Though he’s barely taking anything in now.

SS said OH have to go and assess him. They won’t get him out of bed though unless they get a hoist fitted. Some days he doesn’t get up at all. At least 3 days a week so what’s the point in DM paying for carers to come if he’s not up to getting up.

He needs regular checks for skin integrity. Carers can do that. Also to give your Mum some support and help her to feel that she's not alone day to day