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

@countrygirl99 thank you it at least gives me an idea. I'm sorry for your loss

@projectme I'm early 50s too and feel like this should be my time now. DM still tries to push boundaries but I'm a lot firmer now and won't be manipulated or quilted into things. I am definitely making up for the last year and having a great time. I do my bit still but on my terms, I feel a lot better for it. I still don't have as much time for me as I would like but there I'm a better balance now

That's the thing...finding the happy balance, which isn't easy when you're a 'mum pleaser'. But it's good we've recognised it and have put plans in place to mitigate.

@moggerhanger Just catching up with the thread, so sorry. I hope the lucidity was a balm at the end, and I learned something new there.

Hope everyone else is doing ok. My father is now in assessment bed, looks frail, still confused and lost, has had multiple falls every time they try to step down from 24/7 121 care. But at the meeting with social workers that is coming up to discuss future care needs, my sister (who doesn't do any actual physical care for my parents- I found a carer for my mum while I am back with my family and job) is going to push for him to be sent home because she knows it's what he would want. She is convinced he is making progress all the time, and will make great strides once back in their home (in their completely unsuitable house, with a frail wife who has dementia). My mum's carer is very astute and has told me to just smile and nod, and let the social workers deal out the reality...

@rosemarypetticoat isn't it amazing how some people are completely unable to see what is in front of their faces.

The denial runs so deep. Sometimes it's like we're living in two different realities. There are conversations we've had with doctors where we have taken away completely different things. Even the DNR conversation!

@rosemarypetticoat I wouldn’t advise staying quiet in the meeting with social workers. You need to lay down boundaries from the beginning about what you’re prepared to do or not prepared to do. Social workers nearly always assume families are willing to drop everything and step in. If your Dad goes home and stuff happens you will be the first port of call not them and emergencies nearly always happen at weekends/bank holidays anyway. If you feel your Dad ideally needs a care home then say so. People really can be so unrealistic.

My grandmother (99 years old) is in hospital after a fall. She is being treated for chest infection and on very strong pain relief for historical fractures (osteoporosis). She is having alot of stomach issues and the doctor casually mentioned they were looking at arranging a colonoscopy and surgery to remove a small blockage. This is just crazy to me - operating on a 99 year old woman with extremely limited quality of life. We have now refused all invasive tests and treatments for her - we just want her to be painfree and comfortable. No wonder the NHS is on its knees.

OMG @Nodancingshoes that's insane.

Mind you, I remember when I was a student nurse, looking after an 88 year old woman who had had a vulvectomy (excision of her external private parts) and plastic surgery reconstruction of the area, with radiotherapy and chemo. She had cancer of the vulva.

I'm quite sure that all this invasive treatment was carried out so that the surgeons could practice. It was a disgrace.

What do you think that's about , denial? I can't stand it. I feel massively uncomfortable in situations where people aren't being authentic. I can pick up the vibes, the body language and so on and if its at odds with what they say, I feel so uncomfortable. Years of being raised in a toxic home.

My parents were in denial to the end. My Dad pretty much up until they applied the oxygen mask. Its desperately sad and so unecessary.

Terribly sad and well done for taking that decision.

We were in a similar position with DM a couple of years ago, @Nodancingshoes but the blockage had started to cause faeces to come back up the other way and she was in severe pain, which was all clearly hideous, so surgery was the only real option. She wasn't really expected to survive it, but she did, though spent a few days in ICU. So it may be this rather than inappropriate, though obvs it may not!

What do you think that's about , denial?

I’m sure there’s whole areas of study and therapy on this. My assumption is that it’s some kind of maladaptive coping mechanism for whatever the person is facing. Maddening for everyone else though. Who wants to be the bitch sister to grab your sibling and shake them and say “our parent is not immortal! They are going to die! Accept it and focus on making their remaining time with us comfortable”.

@Nodancingshoes i bet your grandmother is very fortunate to have her family looking out for her in that way. I hope she remains comfortable. My MIL similarly had doctors planning surgery for a blockage that may have been successful (debatable) but would have meant her remaining life would have been in pain from the operation. I wonder if in many situations doctors float these plans to see what reaction they get from family to see if they’ll get pressured to treat at all costs or not. The doctors treating DF told him and us straight that dad wouldn’t even survive the anaesthetic, so we knew where we stood. Not nice hearing it but it had to be said and we could face it together.

They have had a meeting now (doctor and consultant) and agreed that surgery would not be beneficial. The stomach issues have only come about in hospital - it's not the reason she's there. Honestly, I don't know what to think - I just know we wouldn't let animals suffer this way

@AgitatedGoose thank you, I think you're right. In the meeting with the social workers, I will speak out, it's just in day to day conversations with my sister there is no common grounding in reality - she particularly can't bear hearing it from me, I seem to trigger her the most. Families, eh?

So the palliative team have been and they are going to get her home. The is end of life funding available for 4 care visits a day plus we will pay for the ones we have already arranged so she has someone there nearly all the time. They said it will be a few weeks. I'm relieved - I don't want her to go on for months suffering

@Nodancingshoes Im relieved for your grandmother than the doctors saw sense for once. I really don’t understand this constant drive to extend someone’s life regardless of the quality.
A few years ago a family friend aged 100 developed severe leg ulcers and gangrene in one leg. Despite her age she’d been fully independent until then. The doctors wanted to perform a full leg amputation which would have rendered her disabled and dependant. Thankfully she still had capacity and was able to refuse this life sustaining treatment and died peacefully a few weeks later.

I feel strangely guilty posting here, as it's acknowledging something I think DH is slowly coming to.terms with. MIL is 92, and has had two hospital admissions in the past 3 months. The first was prompted by a fall, where there was no injury, but the ambo crew found a heart issue, so she went into a ward for various tests and new medication. The second admission was because she stopped being able to walk properly with one foot dropping.

She's now back in her flat, with carers 4x a day. The last hospital stay, they noted that she was confused. Realistically, she's been sundowning a while. We found out yesterday that she had stopped taking most of her medication because a woman "in charge" had come to visit her and told her to stop. She has no idea who this woman might be, nor which medication (if any) she was told to stop. So we are trying to find out what the instructions actually were and from whom. Weekend is not promising for that.

We are also in the capacity paradox. She would likely pass a capacity test, but she is not really capable of understanding some decisions or instructions. She has always been very argumentative so it's not as though we can see that as cognitive decline. DH is taking the brunt of her temper, and trying to bottom out the latest meds issue. He's going to talk to her today about at least medical POA, so he can try to get her medication sorted.

This has all been building up over time, and I think last night's revelations are bringing out worries to a crisis point.

POA's are taking 6 months or more at the moment. Her GP might confirm meds with your DH, or at least print off a current repeat prescription list which might help (if it's up to date).

Thanks @YouMustBeHappyNow - that's useful to know. We can see if we can get hold of the GP, and the current prescription list. She's taken only one of her meds this week. We suspect she might have confused them changing her to blister packs with her needing to stop the medication altogether. She mentioned the blister packs a lot last night, so that's our best guess. Going over shortly, so will see if we can find out who "woman in charge" might be. MIL is in semi-sheltetrd, so the visitor book might give us a clue.

@CrepuscularCritter as an interim measure for medical POA, if you get your MIL to sign a letter authorising the GP to discuss her medical records and situation with your DH and give that to the GP surgery that should allow you to call up and discuss medications, test results etc.

Moving to blister packs was the time my dad finally allowed carers to come in and help. He simply couldn't work out how to go across to Tuesday and then down to mid day to get his medication to go with his lunch. But he hadn't been filling his weekly pilll boxes correctly - he was taking 14 tablets of six different meds a day plus he was doing my mum's 5 meds. And sometimes mixing them up!

So we started with care visits 'just to make sure you take the right medication as that's important' and ended up with a 4 visits a day doing showers, dressing, making food and doing the meds.

Good Luck today.

Just returning to this thread (I was mostly on thread 1) to offer solidarity with what everyone is going through. Having been through all of this and coming out the other side I can only liken it to having had PTSD. The reason for returning is to share this excellent piece from The Times today which I think comes very close to putting into words the reality of dealing with Dementia. Like me, the author had all 4 parents with various forms of the illness. Just reading the article did take me back - the never having a day off, the constant underlying stress and the constant expectation of being available to everyone at all times.

Sending you all love and strength.

https://www.thetimes.com/article/e5511e74-9cd8-4bb1-a0e0-84821249fd6d?shareToken=52d3f370ebfc6ac21b863ec4e091f20b

Thanks @Choux That's a good idea with the GP letter. DH is checking the visitor book to see if that gives us any clues who MIL's instructions came from. Also sorting a medications box to help.

Still in hospital..sitting beside her now as she sleeps. She has a morphine pump now. When she wakes up she is scared and confused. She's still eating a little - mainly ice cream, and drinking sips of water and tea. I'm done tbh - this is inhumane.

I visited DF last week, he wasn't as talkative but he did seem understand me. He seems calm now all the finger wagging and intimidation has stopped thankfully. DM said that she would rather his body gave out before his mind does as that would be even worse to see, I understand where she's coming from as does seem kinder but whether the Dr's will let that happen is another story