So bloody exhausted waiting for someone to die 3

[StiffyByngsDogBartholomew]

Carrying on from our first two threads..
https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

@AgitatedGoose thank you, some very good advice there. And you're right, the funeral won't bring me or my mum comfort, so it almost feels like going through the motions for my sister's need to have some performative grief but at what emotional toll?

I think this will hit me in the months ahead, when I have a chance to catch my breath (next step is dealing with their entirely unsuitable and unmaintened house stuffed with 50 years of crap). I'd rather mark my dad's passing in my own way in my own time.

Solidarity to everyone on this thread, I haven't posted much but have found it a great source of advice and comfort xx

@rosemarypetticoat I am very sorry for your loss, and for having to endure a funeral that's not necessarily what was wanted. I also understand the difficulties in communicating with your mother as if he was still alive. It's hard and desperately unfair. I agree with the suggestions from the other helpful posters of "love lies" or responses that will give comfort to your mum. If you don't want to create a narrative for her, you could always just respond to her enquiries "oh, he's about the same" - which is not necessarily a lie.

Wishing you love and strength for the days ahead.

I don't post much on here, almost never really, but derive comfort and strength from reading what people post. Two days ago, my mum admitted to me that she doesn't always make it to the loo "on time". I've known this to be the case for several months now, but gentle queries have always been met with lies or anger. And so it begins...

@HoraceGoesBonkers
Christ, two years!? How are you all managing through it? That sounds so difficult.

There have been so many times over the last few years when it seemed like she was going to die, but she's pulled through. At least earlier on, she was coming back to some level of quality of life. But now she's as you describe your dad, not able to speak or move and mostly asleep. I don't know where the strength is coming from.

Like you said, I can't put things on hold for this. I'm already spread too thin as it is and I don't want to miss out on my kids while they're still young and (mostly!) want to spend time with me. It's such a shit situation.

You're not alone. Been there. It can be a relief to have your loved one put on EOL care officially, so you no longer look on bewildered as they apply (what seems, to you) futile treatments to someone who is clearly (in your eyes) dying.

@rosemarypetticoat I am so sorry for your loss and all the turmoil you've endured.
I'm a lurker, but thought I'd share what is becoming increasingly common here in the US when there is a death. Instead of having a funeral, the family puts out a message that their loved one has died, and there will be a memorial service honouring them at a later date. This way, the family is allowed to grieve without the stress of planning an event when they are still in shock...the memorial service can be anywhere from months to years...it's up to you. And sounds like the perfect way for your sister to finally get involved.
When my DF died of cancer at the age of 92, we decided to have a graveside service with close family only. He was a state official, and could have had a grand affair, but the thought of having a funeral service with tonnes of people was just too overwhelming for us...which in the end is all who really matter.
I just went to a memorial service for a friend who died 6 months ago. The family had time to get over their shock, and it was a nice event honouring their mother...they even had a bagpiper dressed in full kilt attire leading to the reception afterwards.

@Sweetpea1532 thank you, I think that's a really lovely idea. Everyone gets the closure they need, but in a time and setting that works for all. I am going to propose that to my sister! I've also been thinking of honouring my dad in other ways, like sponsoring a park bench on a favourite walk, or donation to a music charity. Something more meaningful to who he was as a person, and that my mum could perhaps find some comfort in, even unknowingly. Thank you x

@rosemarypetticoat Good luck and I hope your sister is open to the idea of a memorial service. I think funerals are often rushed and perfunctory and having a complete stranger officiate and parrot things you told them never feels very authentic or meaningful either. I really like the idea of a bench as a memorial and always feel very touched when I see these.

I did that for Mum. Direct burial with only her partner and us there, no service.
Later, a combined memorial/wake at a local social club.
Most of her friends were pretty old, it was winter, cold, graveyard had lots of slippery mud underfoot... Yeah, no.

We did the same for my father, small burial service, graveside, for only immediate family and a few very close friends then a memorial service with all the bells and whistles a month later. This worked really well and also gave family and friends who were abroad time to plan a trip.

Hi everyone

I feel like I'm going mad at the moment. The weight of waiting is really dragging me down. My mum seems no nearer the end than she did a few weeks ago.

Meanwhile, a friend mentioned anticipatory grief, and I feel like I have that big time.

I'm trying to do all sorts to go out and do things, but all the time there's this massive weight of waiting hanging over me. I hate to admit this, but I'm impatient for my mum to die because I feel like I'm being crushed or held down, even suffocated by all this happening.

I hate people (carers) coming into my house all the time, and feel like a terrible person because I want it all to end.

My mum is eating and drinking very little, and when I think of all the time I spent making sure she was hydrated and eating vaguely healthily, I wonder why I bothered because she seems perfectly at ease with hardly any liquids, it's not having any detrimental effect on her whatsoever.

All the struggles I had making sure she had "enough" to drink, so she didn't succomb to any infections makes me laugh grimly now. What was the point!?

I now envisage this going on for months and months and months without an end in sight, and I can hardly bear it.

It's like a prison.

And yes I'm getting out. I seem to do nothing else but have stuff on so I can escape! I've never done so much in my life! The irony!!! And I do it because I can't bear to be in my own house because it's all so oppressive.

Thanks for listening (reading) folks. I feel I need some other tactic to get through this, but I don't know what it is.

@GoldenSpraint sorry for your situation it might help to watch something like this https://www.sueryder.org/grief-support/about-bereavement-and-grief/what-is-anticipatory-grief/

Thanks for that :)

All the struggles I had making sure she had "enough" to drink, so she didn't succomb to any infections makes me laugh grimly now. What was the point!?

Hi @GoldenSpraint after years of caring, and being matron of a dementia care home as well, I've realised that the human body can survive on very little fluid, for much, much longer than medical science suggests.

When my aunt had dementia, she literally only drank 150ml of coffee each day, for many, many months. She'd realised that she was incontinent and had decided that drinking less would mean fewer accidents.

She must also have got some liquid via her meals, which were tiny.

I also recall a patient who had a massive intestinal obstruction and was completely unconscious. She also had large doses of morphine and other meds, via a syringe driver.

She survived three whole weeks from when she'd last had any fluids.

The human body is very surprising sometimes.

But I take your point @GoldenSpraint about wondering why you'd made all that effort to get your mum to drink. I think we often feel that it's an endless battle to do our best for our loved ones, and there's ultimately so little gain.

My mum drinks about 300ml a day and has tiny meals. So I can't imagine how long this will potentially continue.

On the potential good news front, she is having a continuing healthcare assessment soon, and it looks like she may score severe on mobility and cognition, so fingers crossed the NHS will fund her care.

Last month's bill was an eye watering six grand.

@GoldenSpraint good luck. We did secure CHC for our Dad which was a relief not because they didn’t have the money but because our mother made such a drama out of ‘what will I live on?’. She actually told me that she would only have £12 a week to survive on which was a complete lie. I pursued CHC on the advice of the home manager and the nurses and was pleasantly surprised to be awarded it relatively quickly. I was also pleased because my mother told me I hadn’t read the information properly and had misunderstood what CHC was. I hadn’t. Again every opportunity to put me down is always one seized by her.

Anyhow with POA Finance we soon discovered there are hundreds of thousands of pounds plus policies all over the place added to Dad’s very healthy triple locked pension. In short she is a wealthy woman with a good income. Another example of her knowing or thinking she knows better. I think she is a bit gutted CHC was awarded as it means she can’t drone on and play the victim of how hard things are for her.

God @BlueLegume it's all such a nightmare. At least your dad got the funding!

@GoldenSpraint yes there is an irony to it though. Both parents have been vocal about what they deem to be ‘benefit scroungers’ all their lives. Anyone fat is lazy, anyone with mental health issues needs to ‘pull them selves together’. They refused to make adaptations to their home even though they have desperately needed a downstairs bathroom for years. Always knew better. then when everything inevitably fell apart it isn’t their fault. The irony of the CHC is that they have spent a lifetime wanging on about how much they have paid into the ‘system’ getting nothing back. No acknowledgement of being able to afford a decent house at a decent price back in the 60s. No mention of triple locked pension pensions after jobs guaranteed for life. No mention of the money made off the back of buying and selling shares in privatised companies in the 80s. No mention of being able to retire very comfortably very young. No mention of having had NHS dentists all their lives. As things stand Dad has had by my estimate 18 months to 2 years of fully funded NHS treatment then fully funded reablement in a facility and now 13 months or so of fully funded nursing home care. That alone must be running into close to £100k. I needed a medical procedure a few years ago. Cost me £8k because the NHS wait would have disrupted my ability to work. I pay for my dentist….you get the drift. At no point has my mother expressed any gratitude for the fact she has not got to contribute. Before I am flamed Dad is in no pain, I check that weekly. He is well fed and cared for.

Do you mind me asking, how did you manage to get CHC for your Dad? I’m thinking of trying for my Mum, who has Alzheimer’s. She had to leave her original care home due to behavioural problems, she’s now in a nursing home. I tried years ago to get CHC for my dad, he has Huntingtons disease and was at the time regularly breaking windows in his specialist care home, he was refused. I’ve seen companies online that help and was wondering if it’s worth a shot. Mum screams and cries and needs help with everything now (feeding, washing, walking, incontinent) the home manage her well but is £7.5K a month. I was wondering if it’s worth a go.

@SinisterBumFacedCat I will PM you if that’s ok.

Mu understanding is that CHC needs to have frequent nursing decisions. FILs application was being fast tracked when he died as his treatment for multiple conditions was clashing. Each would have been manageable on their on but the treatment for one was adversely affecting the others and his treatment and care needs had to be evaluated on a daily (if not more often) basis. He had 3 diabetic comas in his last 6 weeks in-between hospital admissions. All because his pain meds for cancer caused vomiting that upset his diabetes and Atrial fib control. MIL didn't get it despite being profoundly disabled, non verbal and incontinent and needing someone 24/7 as her condition was stable.

@countrygirl99 I am starting to think we just got lucky because the staff at the home had some tricks up their sleeves re CHC!!

@Canyoudigityesyoucan inhumane it is. I hate the ‘oh everyone is living longer’ statement. No, everyone is being over treated with medication so the ‘exist longer’. They are not living.

@Canyoudigityesyoucan inhumane it is. the mantra of ‘everyone is living longer’ is not the correct term. People are ‘existing longer’ because we medicate everything. There is no living for these people just endless medications tweaking various ailments.

@BlueLegume its so true.
yet even wishing that it would all come to an end and repeatedly saying it's gone on too long, dad wants to take mum to the gp because she keeps coughing. I asked what he thought this was meant to achieve and he thought she could get some treatment. And he's worried she might have cancer.
i don't know why he's worried, a quick death from lung cancer would absolutely be the best thing for her and end this endless existence plus relieve the caring burden he hugely resents and is taking a massive toll on his own health.
and for what ? To keep someone alive who is depressed, can't move, can't speak, has no quality of life and can't control her own bodily waste.