So bloody exhausted waiting for someone to die...

[Poochypaws]

Nobody tells you how utterly draining, exhausting, depressing it is waiting for someone to die when the death has been 'expected' for years. Got told 4 years ago person might die as soon as 6 months but might be lucky and have a couple of years. Ok. Spent the next year spending every possible minute with them. Watched all their favourite movies with them. Listened to their favourite songs with them. Talked about loved ones and memories. Took them for lots of nice walks/outings. Basically put my own life on hold and compromised my own health to give them a nice 'ending'.

Except they didn't fucking die did they. So much for doctors predictions.

At first I was glad to have extra time. It felt like a gift. It felt like we had stuck two fingers up to death. As time has gone on though and the person needs everything done for them (EVERYTHING!) but still they linger on.

They go into hospital (about once every couple of months)- carers have to be cancelled, shopping has to be cancelled, perscription deliveries have to be cancelled, constant phone calls from hospital nurses ' can you bring this in, can you collect dirty washing, when are you visiting'

Then they are ready to come out of hospital. Carers have to be found and reinstated and everything else has to be put back in place.

Meanwhile having agreed to go into a carehome (social say person does now need 24 hour a day care) person has now told social they don't want to leave their own home.

Everyone around them (ok not everyone, just those involved) are on their knees with ill health, mental stress from the constant waiting, exhaustion from never knowing what is coming next and still the person keeps hanging on.

On about 30 tablets a day, requires washed, fed, dressed, help to leave house, taken to all appointments, all housework done, all admin done, entertained and you never know from one day to the next when the next fall or hospital visit, dentist emergency, optician emergency, will be. They are not like 'normal' people going to the dentist twice a year. They seem to need to go every month so their appointments are about 10 times those of a normal person. Constant infections, bleeding, bruising, swollen ankles, can't breathe, can't eat, can't sleep and still they go on.

Why god, why! I fear I might die first from the stress.

For those of you who have been asked by your gp or social or a nurse to 'help out with your parent' because they probably don't have long left anyway (ha, bloody ha) Think long and hard. Really long and hard. If fact don't think just turn the other way and run.

The NHS seems hell bent on keeping old sick people with no quality of life alive as long as possible even though the trail of destruction behind them far outweights the benefit of keeping them alive.

I used to see people at funerals and assume they were all sad. Of course people at funerals for young people will be sad. Now I realise for those who have elderly parents who have lingered and lingered and lingered they are not sad at the funerals they are RELIEVED. GLAD. Probably cracking open the bloody champagne in the evening.

For those of you who have never been in this position for years you have NO idea what you are talking about so don't bother commenting. (I had no idea before I did it and would have thought differently)

So tell me who is benefiting from this shitshow.
Old person - nope miserable, ill and poor quality of life
Anyone helping - nope, miserable, ill, poor quality of life
NHS/Social - resources being used HUGE, benefits ??

Finally in last few weeks I have taken a stand and withdrawn support. Literally had to shout at social and hospital nurses who seems to ignore the fact the 'carer' is having a nervous breakdown telling them to 'carry on what they are doing'. NO. NO. NO.

This will force a care home entry which is what is needed. NEVER AGAIN.

🙄

I think this is why people don't discuss it
Also why I think the OP was so brave to post

@Daffodil63 Wow. Good for you. I’m sure you feel much better for popping onto this thread to let all of us and the OP know how much of a better daughter you are. Please don’t stop there. Perhaps you could also give us your top tips on being such a dedicated carer for 16years? Did you too have a 5/6 hour round trip to do so? Did your Mother also refuse to move closer/in with you/downsize from a property requiring a huge amount of upkeep so that everyone’s life was made a bit easier? Please do also share how you managed to go on holiday/work FT/raise children/not neglect your relationship/marriage/cope with the constant demand on your time whilst also making nutritious meals from scratch for your family and greeting your DH/DP with a fresh ribbon in your hair?

Or maybe in future consider why you feel the need to post this sort of comment? Do you feel better afterwards? Genuinely curious.

In case you haven’t noticed, this is a sharing/venting/supportive thread. No judgement necessary, most of us have done our very best, have been run ragged and suffered enormous stress as a result of becoming a carer under the assumption we either want to or are happy to. And not everyone enjoyed a Hallmark card relationship with the people we are expected to care for. There is a world of difference between being a carer after a discussion and one where it creeps up on you by stealth. Especially when it affects your own family, wellbeing and career in doing so. So please, if you have something to share that might help just one person on here, please do tell us. Most of us already have sanctimonious people in the wings who are not helping but wearing an enormous pair of judgy pants IRL, so with all due respect we don’t need it virtually from some random on the internet too.

To everyone else on here, know you are doing your best. I’m up at 5 because I both care and because owing to our circumstances my DH has yet another 5hr round trip ahead of him today (assuming he doesn’t have to stay the night and have zero downtime for himself after a full week at work) and I want to make sure he at least has a coffee before leaving for the third disturbed Friday night he’s tried to have at home in a row.

Well bully for you. Presumably you and your OH weren't splitting you efforts between 4 parents 2 each an hour away in opposite directions who obstinacy refused to accept the help they needed but expected you to drop everything and come running the minute they frequently had the slightest problem. And that often each set of parents would have a crisis at the same time so one of you would be at A&E and one of you with a parent who needed looking after 24/7 in their absence when you get a call that one at the other location has fallen/has messed the floor/ locked themselves out.
And you haven't had to tell your mum who has alzheimers that there is a less than 50/50 chance your dad will survive this infection because The hospital consultant thinks it should be a face to face conversationand due to covid restrictions he can't do that. And had to do that again and again until he does actually die a shrivelled, shadow unable to respond even to mum's tears.
Maybe have a bit of empathy and realise other people's experiences might differ from your own and that doesn't mean you are a better person, just possibly luckier. And maybe realise that making comments like that definitely makes you appear not very nice.

@countrygirl99 absolutely this ⬆️

Although having read one of the other posts by SmuggyMcSmugface whereby she wanted to call the Police on her own husband whilst they were both in the car because of his driving (perfectly normal response I think you’ll agree 😂), I don’t think they inhabit the same world the rest of us live in. I.e the real one.

And what did you prefer?
Your DM was quite happy to tie you with such sacrifices in the prime of your life to meet her wants at the end of hers?! For so long?!
Shocking selfish parenting.

@Nubnut my DF refused meds, so he was sectioned under Section 3 of MH act that meant they could give them to him covertly in his food (and still do) the first I knew about the section was when I had a call out of the blue to inform me he was refusing meds and that all relevant professionals were attending the home that morning to assess and section

@Daffodil63 some of us don't have a choice. We were being physically threatened, hit and bullied. I had a lit lighter held up to my face, sister in law was hit with a walking stick, my daughter was pushed, my mother was being shadowed and threatened not allowed to leave the house to even do a food shop. DF walked out of the house in his dressing gown and SEARCHED a neighbours house looking for my DM terrifying the neighbour in the process.

My DF was not and is not a kind gentle loving man, he has been a vile bully all our lives and myself, my mother and brother all carry mental scars, we are only now beginning to process and speak openly and honestly to each other about our experiences. I am ashamed of the abuse we all suffered.

I've been decent and kinder to DF then he deserves I've fought for him to be moved from a secure dementia unit to a nice care home, still we are all abused and we have people say its the dementia, I'd agree some of it is but a lot of the chap we take is still him. He doesn't love us, we are there to serve his wants and needs.

Do I wish this shit over for him and us? Yes because although the man is a bastard I don't wish this on anyone its cruel and for us the rest of the family I want peace for us. We have had a living hell through this, the only difference for us is now people see it because the dementia has stopped him hiding how he has always treated us.

Would I be willing to be his carer for years to come no, he is not safe to be around, treats us with disdain and I will not allow him to take the last few years of my DM life being his skivvy.

@Daffodil63 I would add DF was so dangerous to us that social services told us to never be alone with him, that meant for weeks as a family we were having to take time off from work to effectively guard my mum and protect her. It was dangerous and unsustainable. I live 2 hours away, I had to take most of January off work to stay with my mother, I didn't work, didn't see my husband and was in my parents house being verbally abused and threatened every day. On one occasion two male family members had to be called and myself and my mother had to leave the house for our own safety.

I am not ashamed to day I felt sick walking into my parents house each morning after my brother slept there at night to help with lifting, cleaning etc because I knew I'd have another day of abuse.

Mum had coped as best she could for 6 months, had a carers breakdown and threatened to harm herself as she couldn't take anymore. DF is incontinent but would even assist and wear a pad (still wont) so would stand up and pee and poo on the floor then expect her to clean it up.

I had to be physically protected by a Social Worker because my dad tried to attack me when i was being asked to complete some paperwork.

Honestly your sanctimonious comment has made me so angry, you have no idea what others have had to live through.

@Tara336 i’m so sorry to read this. Unbelievable that medical intervention has been decided as appropriate for someone with advanced dementia who is violent. There seems to be no rhyme or reason as to medical approach from area to area. My DH was told very firmly by the senior HCP at the nearest city hospital that MIL should not be sent back to them at all. They were actually quite cross with both the care home and ambulance service for sending an elderly lady with no capacity unaccompanied to the hospital outside of the 4hr stroke window after which there is nothing they can do. He’s had to fight both the care home and ambulance service lately to stop them adding to her distress by shipping her off to the hospital after this discussion. As someone pointed out upthread, when it is your unresponsive baby or your 50yr old husband having a heart attack that you can’t get an ambulance for, you might have a very different viewpoint.

@Tara336 that all sounds utterly horrific. Caring is hard enough let alone having to do that for such an abusive person. My heart goes out to you, people like @Daffodil63 have absolutely zero idea. No wonder you are livid.

@Iidentifyasweirdbarbie thank you, we want it over for us and him, he is miserable and doesn't want to be in the home but it's not safe for us. He has attacked other residents and staff in the last place he was in. He doesn't want treatment and I don't think it's the dementia it's him that's decided that and yet they section him to force treatment and we don't get a say in that. We aren't bad or uncaring people I have fought like you wouldn't believe to get him somewhere I thought he might be more comfortable, as my DH has said to me my DF doesn't deserve the effort I've put in but he respects the fact I want to be decent for him and there have been times where I've become ill from the stress as anyone who's had to deal with social services would understand. But I've achieved what I wanted and now I visit as and when I have the time and feel inclined too.

@Ilikeyoursleeves thank you, we found out recently that DF had begun antagonising other residents in the dementia unit and one had retaliated resulting in some bruises and cuts to his arms, he also lashed out at staff. We had to block phone calls from him, I was the final one to refuse calls after he rang me twice one morning to swear at me and tell me that I'm not fucking good enough as I hadn't managed to get him moved yet. No homes wanted to take him due to his behaviour I was literally badgering social services to help me, contacted MPs, Ministers anyone I could think of to get him moved. Now he is in a home he has no interest in speaking to me as I have fulfilled my use. Now he just swears and shouts as DM everytime she visits about having him home, then he goes back to being non verbal again.

@Tara336 that sounds really impossible. What a hideous situation. I hope you can put down boundaries and only see him / communicate when you want to and on your terms. Old and ill or not, no one should be subjected to that abusive behaviour 😢

@Daffodil63 oh do just go away. This is why this thread exists because people like you means we can’t discuss this in real life, for fear of being judged as despicable rather than folk at the end of their tether juggling all the balls in a situation that isn’t going to get better.

The fact that ‘carers breakdown’ is a thing should tell you all you need to know.

And please tell us, was your mother a lovely kind soul for whom you’d gladly care for? If so, then great but for many of us our significant care giver at best was apathetic or indifferent, at worst was a vile bully. So it’s a bit difficult trying to be all the things to them that they weren’t to you.
Have a bit of empathy!

My DM died this morning after 8.5 years of misery. I don't know what to feel. I'm so glad her pain is over but I'm so heartbroken the last years of her life were dreadful. I can't bear to think of how I last saw her.

There is a book called The Peaceful Pill which gives advice about ending your own life. It's expensive and restricted but I am buying a copy just in case, as there's no way I want DS to ever go through what me and my siblings have. I hope this doesn't offend anyone.

I am so sorry for your loss. Such a very difficult time. We are conditioned to grieve but the the relief. The whole experience is hideous.

My mother died in hospital after being in a care home for almost 10 years. She would have hated the last years of her life so I understand what you're saying. I shall look for the book you mention because I agree I do not want my DH or DS to endure the living nightmare.

So sorry @Squirrelsnut. I do understand the feelings of relief but also regret/anger that the last years were so awful, and that your loved one didn’t deserve that end.

So sorry for your loss @Squirrelsnut look after yourself today. 💐

@Squirrelsnut take time to look after yourself.

🌻to all of you who are dealing with such difficult situations. This thread is fantastic for people to be able to say the unsayable, thanks OP. We have 4 elderly DPs who are not easy but reading other people's stories makes me count my blessings.

I recently read a book called Being Mortal by Atul Gawande (got it as an ebook from the library). I can thoroughly recommend it.

Also I watched The Father (with Anthony Hopkins). It's an amazing film, it really helped me understand dementia a bit more and have a lot more compassion for my MIL.

Sorry for your loss Squirrelsnut.

@Squirrelsnut I'm so sorry for your loss.

@CockroachCluster I second the recommendation of The Father. I've recently watched that and also Elizabeth is Missing with Glenda Jackson, and read Keeper by Andrea Gillies (a MN recommendation). I found that all of them really helped me to empathise more with someone experiencing dementia. The book in particular is also a very honest insight into how the reality of caring for an elderly relative can be so much harder than the expectation.

@Squirrelsnut I'm so sorry for your loss, take care of yourself, we are always here to vent too x

A GP friend of mine has a care home in her catchment. She thinks the residents shouldn't get flu/covid/pneumonia vaccines. I was quite shocked when she first said this, completely understand now though and she's absolutely right. I don't blame her not wanting to vaccinate a double incontinent 90 year old with advanced dementia causing them to live in terror and pain. Obviously, she does vaccinate them because that's what society expects and she treats them with antibiotics if they get sick so as to keep them going a few more months.

Society needs to have a serious conversation about whose interests this is in. Also, the elderly person ISN'T the only one who matters, as is so often said.

@Kendodd
It's such a societal expectation indeed. If my dad doesn't die in the next few weeks then given he is now bed bound in his care home then it would probably be an infection that would end things. But I know when/ if they ask me if he's to get antibiotics I'll feel terrible for saying no (although it's now recorded he's not to get any active treatment). I still feel like I'd be killing him off even though I totally KNOW he doesn't have a life, he looks like a breathing corpse now, and that relatives share my opinion. It seems to go against the care homes cheery voices when they excitedly tell me he's had 'lots of fluids and doing great!' when they call me 😩😩😩

@Squirrelsnut sorry to hear your news, I bet you're full of mixed emotions. Sending hugs and hope you can be kind to yourself x