So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

From my experience, hospices tend to work to about two weeks. They would assess the patients condition after that, but if your mum was ill enough to qualify for a hospice bed, it would be unlikely for her to pick up enough not to qualify for hospice care (at home or on hospice).

I had the same worries about my mum when she had a ‘good’ day. We had to battle to get the space in our hospice, and I was terrified of her being discharged. I think it’s quite unusual though.

Yesterday was my Dad’s funeral. It was beautiful and poignant and the only thing that was difficult was three members of Dad’s family turning up particularly as they hadn’t bothered with him or me for years. Now that everything’s over I feel cast adrift and untethered. As an only child I’m now completely alone and I know moving forward I’m really going to struggle. It’s a good thing that most of the time I’m extremely capable.

Sending lots of love, @AgitatedGoose

Sending strength @AgitatedGoose . How do you see your new life

@Thiszebraiscrossing I’m not really sure how I see the future at the moment. There’s a lot to sort out which will take several months. I think I’m just going to take one day at a time for now.

Mum's still in hospice and I'm still staying with my brother. DP is coming over next weekend and I've just booked flight home with him when he goes home on Sunday. Missing my kids terribly. If thins change I'll just cancel my flight. Drs have said that they didn't think that mum would have been with us for this long. She's having meds increased pretty much daily, is having issues with cough, stopped eating so much over past couple of days and is having thickened fluids. She's totally fed up with everything. It's hard

@gcn it does sound a little as though things are moving on. I hope all the associated burdens drop away soon.

FIL is still with us in the hospice. Maybe it will turn out to be respite rather than final admission after all. He does seem to be fundamentally at peace.

Gcn I’m sorry your situation sounds hard. Particularly when you are a long way from home and your kids. Torn either way. Should you stay or go.

My DF, 95, is in the hinterland between life and death. After several episodes in hospital he’s back in his care home, bed bound and mostly sleeping. His delusional phase now gone - there’s little communication. He eats a little and is well looked after. It’s not a life, barely existence and we are just waiting for him to die.

@Bouledeneige unmumsnetty hugs to you x. Mums been really confused over the past few days. Last night I got the silent treatment from her because I wouldn't give her a nonexistent diazepam from a non existent chest of drawers. She thinks she is at home and can't understand why I'm letting lots of strangers into her room. It's shit.

This isn't a thread I want to join, but I know no one in real life who has been through this.

My Mum had a massive stroke last July. Somehow she survived it, spending 3 weeks in a coma, months on a rehab ward and then in to a care home last November. Her memory was brilliant, she could eat, talk, laugh with us etc. 2 weeks ago she was OK, then on Thursday she was admitted to hospital, and tonight the consultant has called to say she is in multi organ failure and is advising she be put on palliative care.

I don't want to lose my Mum, but she's fought so hard and she's tired now. My Dad has dementia and she did everything for him, so I am now his carer and trying to navigate this with him is a rollercoaster. I live an hour away from the hospital, and have 6 children, including a 9 week old. They said it could be just a few days, and I just don't know how to do this. I suddenly don't feel 42 anymore, but 6 and scared and in a daze.

What do I do? What should I know? Please, any advise would be so appreciated. And I'm sorry for all those going through this too, or who have already said goodbye.

Oh my goodness @Lidlisthebusiness what a situation. Do you have any support at all? Partner, siblings? What would you do if you had enough support?

How aware is your DF and would it be realistic for him to visit too, or would that just upset him? Would respite care in a home for him be a good idea or would that disorientate him even more? What about some carers going in for him? Call Adult Social Services and scream for help (your council website).

As for your kids - what ages? Could friends help? Not easy with 6. I would be tempted to just pit the 9 month old in the car and visit your dm, but for the others to continue with daily life with your partner if able. A good time for sleepovers if they do those. I'm.so sorry.

@PermanentTemporary thank you for replying. I have my husband who is doing his best with the children, though it's tricky with the newborn. My siblings all live on the other side of the country, one is on holiday at the moment and the other is quite useless.

Dad is aware of what is happening but somewhat in denial. He keeps insisting we keep hopeful that she improves, when I've just heard she's being moved to hospice care today. They've said they'd be very surprised if she was still with us after the weekend. I'm dreading having to repeatedly tell him that she's not here anymore, selfishly for my own mental health.

He has so far refused to have outside carers coming in, but I can't do it all. I've applied for Attendance Allowance to try and sort things like a cleaner/gardener etc.

The children are 15, 12, 11, 8, 4 and baby. A mix of ND too which makes it a bit harder to work through everyone's individual needs at a time like this.

@Lidlisthebusiness oh dear, what a horrible situation.

I think you need to have a bit of a hierarchy of needs here, with you and the baby at the top.

Your dad might want family care but your baby needs you.

Can you speak to your health visitor/GP practice and see if they can get your Dad's GP involved? If they intervene and explain he needs care for the sake of you and his grandchild is he likely to listen?

Sorry about your mum. The timescale must be hard to cope with although it sounds like things will move fast. Does she have a funeral plan? Can either sibling take that side of things on?

I've just caught up on the thread. My love to all who have crossed the threshold. I've been MIA as been so caught up with mam. She is in advanced heard failure and stage 5 kidney failure. She has been in and out and in and out of hospital (just home on thursday) with masses of fluid retention and other problems. It seems like a roller coaster on a loop.

I never wanted it to come to this but we have put in the application for nursing home care. We are going to visit one tomorrow.

Like others say it is so hard. She declines so much at times it has me wondering if we are nearing the end, then she rallies and I don't know at all. It's been five long years and I feel so guilty at times with the things I think.

Coming in to say that my FIL has died. I wrote about him on a thread called 'when a parent is so stoic you wish they would ask for more'. He slipped away peacefully in a hospice after 3 weeks there. He still seemed in fairly good shape at home about 6 weeks ago. Tbh to me that's the dream way to go, though I think it was also brave to refuse treatment- he just wanted to be with MIL who died 5 months ago.

The last time I saw him was 2 weeks ago. That seems a long time. A final way to let him down. There are breaches in the family that felt difficult to work around but of course I should have tried harder.

PermanentTemporary I’m so sorry for your loss. I’m sure you did not let your FIL down.

@PermanentTemporary I’m really sorry to hear about your father in law. Please don’t feel guilty that you didn’t do enough. I think all of us on this thread are coping with incredibly difficult circumstances and do the best we can.

Mum is still with us and still in the hospice. Looks like she's in her final days now, no eating or drinking, ramped up her meds and hoping she'll slip away peacefully. Hospice have been wonderful but it's been so difficult. I feel guilty but am looking forward to getting home to my family after being away from them for about 6 weeks now.

Yesterday she was still alert and I'm hoping that her final words to me won't be "just go and get the fucking ice cream!"

Another one who has been MIA here. Firstly my sympathies to those who have “graduated” from this thread.

@Lidlisthebusiness i hope things have settled for you a bit. @HoraceGoesBonkers is right, you must put yourself and baby at the top of the priority list.

@Gcn, sorry your post about your mum’s comment to you yesterday did make me chuckle darkly. That’s the kind of statement my dad would love to go out on!

There’s not a huge amount of change here, dad is still struggling on with his multitude of ailments. Mum is on holiday with her sister this week for a break so dad has had a few days in respite care and my brother has picked him up today to look after him until mum gets back on Saturday.

Dad’s cognitive abilities are in obvious decline but when we asked the doctors for a dementia test a month or so ago they said they weren’t sure they could do one given his blindness. It’s ridiculous that I was able to find an adapted test for visually impaired people with a 10 second Google search, but a GP surgery can’t manage it. Somehow he passed the test (I wasn’t there, Mum was) they must have got him on a good day, but I’m unconvinced.

@CaveMum thank you for checking in. Mum passed away on the 18th April, I can't believe it's been 2 weeks already. I'm in the midst of funeral planning now, and today my Dad has had a fall in our local town and broken his arm so I'm in hospital with him now. What a bloody awful time.

So sorry to hear that @Lidlisthebusiness. I hope your dad is on the mend quickly. Be kind to yourself too. How is mini Lidl doing?

My DF is refusing fluids now and, thankfully, my mum isn't sending him to hospital. Fingers crossed this is the end.

@HoraceGoesBonkers I hope your Dad is allowed to pass away peacefully without the kind of heroic life saving medical interventions which will prolong his poor quality of life even further.

Absolutely this.

courage @HoraceGoesBonkers