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.

If a mother wanted her child to die then it MIGHT be the right thing. If the child had been born severally disabled, had no chance of recovery and was in agony a good mother would go through hell but would not want the child to suffer.

If a mother wanted a healthy child with it's whole life ahead of it to die then obviously the mother has got some problems because that is not normal and i'm pretty sure everyone on her would beg her to get help for her own mental health and call someone immediately to safeguard the child.

Old people do have some similar needs to children ie providing them food, washing them, take them to doctors. However what kind of deluded thinking says they are 'the same'. One is starting out in life and is not supposed to die. The other is staring death in the face and it is the natural order for them to die.

As I said, you do sound like a troll (or mad). Or maybe those are the same things.

Still you have injected the thread with a lighter tone as it's so silly. So for giving me a chuckle - thank you.

Now I am off to talk to the fridge. It seems the fridge also thinks 'my attitude' is causing all the medical problems.

My mother chose to die at home. What she didn’t do was organize an adequate system of care. She just assumed I would dump everyone and look after her needs 24/7, despite the huge financial burden (I live in Australia, so no NHS - I paid for every damn thing and had to fight for reimbursement because the golden child is a cunt) and had to put my kids needs aside in the process. It was exhausting. She was horrible. She bit, spat, scratched and swore. (It wasn’t her illness… She had been violent when I was a kid, so nothing new… at least her friends finally saw her with no filter. That was gratifying, I guess.) I gave her enemas and cleaned her shit while she bit me. She actually enjoyed making me do this. She refused to go into hospital, refused medication, accused me of abusing her. (I had stitches on my face and arm and had to have tetanus shots and antibiotics because she bit me and drew blood.) She kept telling me that she wished I was dying instead. This was a so-called “Loved One.”

Oh my goodness -That's horrendous.

Sounds rabid. Biting you so you needed medical attention? Awful.

It's shocking that adult children have to care for violent, abusive elderly relatives.

There are definitely 'Easy to care for' people - and some utter nightmares.

Sorry to hear that OP. I hear you.

My grandmother had dementia and her last....I'd say 3-4 years were as you describe. Seeing what it did to my mother I always told myself I wouldn't do 'care'.

Except I am. Not physical care, not yet. My mother is physically well. But she's increasingly forgetful, depressed, stressed, anxious and catastrophising. And I'm managing that. Because I live in the same village and work flexibly/from home and my brother doesn't. You just start doing these things, a bit at a time. And then one day you realize you're doing things you thought you wouldn't.

@Poochypaws i hear you. Both of my parents have now died. My mother died in march and I have to say, I feel like a massive weight that has been on my shoulders for three years has finally fucked off. I did open the champagne. Unless you’ve been through it (and I don’t mean, my mum is elderly and I go shopping with her once a week) you cannot understand. It is like having a heightened sense of alert 24/7. There is no joy to be had on holidays, days/nights out because of ‘the call’. I say to everyone, until someone very, very senior in government on even a ministerial salary with parents on a modest income actually goes through the nhs/SS system themselves they have no idea.

For those who think that SS provide high quality affordable carers, think again. SS provided carers do not within the allocated call time slots (even if they have 10/15/20mins of a call left):
-Clean
-Hoover
-feed pets
-collect prescriptions (and the local pharmacies here will not deliver meds to be left in a porch and won’t accept responsibility for a key safe entry)
-use a job or an oven (microwave only!)
-shop
-attend/organise medical appointments
-date check any food in the fridge

SS will not support the same funding (or any funding!) for the nice lady in the village who is £10ph cheaper and will do all of the above. It is madness. I’ve watched young girls give elderly bed bound people thermonuclear hot soup in a bowl filled to surface-tension levels; cups of tea made with the hot tap ; out of date food served because they have no life experience and no common sense.

So who does all of the above if either a care home is unaffordable or the person refuses to go in? That’s right, ‘the family’.

In my case I had to deal with a sibling (golden child) who was actually helping themselves to our parents £ whilst maliciously reporting me to SS for ‘financial abuse’ (with zero evidence by the way because obviously I wasn’t ) all supported my my narc mother. What I have learned is that SS love a bit of gossip until you actually give them evidence of wrongdoing then you don’t see them for dust)

I for one did more than ‘my bit’. Put my life on hold and as a result have definitely got PTSD. There are no medals for this and there are no winners.

Oh, and I always said to my mother it’d be me with her at the end not the golden child. And I was. Said Golden child sending texts all week asking ‘it if was really necessary’ for them to leave work and come. Even on the morning she died, I phoned them to say the hospital says ‘come now’. They obviously decided to have a shower/five more mins in bed/breakfast/whatever meanwhile…my dog had no walk and I arrived unshowered and starving to be the only person at the bedside at the end. I don’t mind saying that it give me immense satisfaction.

Spot on. Big Pharma, care homes et al benefit hugely from keeping people alive. This is the elephant in the room. It's all about money 💰.

My dm suffered with ill health for a long time, it stated with bowel cancer 15 years ago, progressed to heart problems and her having a double heart bypass after my df died. She passed away last year and she had a DNR, which was put in place when she ended up with pneumonia. She had a cancerous lesion on her lung, so that didn’t help. My dm was happy to have a DNR as when my df passed she just wanted to join him.
I hope your situation improves and your relative gets put in a home. I’ve already instructed my kids to do this for me, I don’t want looking after, not like my dm. I’ve already been promised a home with no bingo by my teenager!

Op
my mum is now in a nursing home
I’ve turned up at all times of the day and never found anything untoward
there are so many staff ,the staff are kind and caring
she has an all about me info brochure ,where I put ,no male carers.
she does have her dignity,the staff treat her with upmost respect

but that is the end of a long painful story ,of me in a similar situation to you
and this is the third care home I’ve had to move her to.
her story is shocking in the other two rest homes

I should do a thread myself about what happened in the rest homes ,because you would not think it possible..

the difference between the first two homes and one she is in now ,is the staff.
staff everywhere in current home ,
none around when I visited in first two

@Poochypaws not me, but my Mum is and has been looking after my 97 year old Nan for 10 years. I have watched my Mum go from a vivacious happy woman who enjoyed life to a shell of herself who is now ill herself and mentally drained.

She will occasionally put Nan in a NH for respite (when budget allows).

I feel awful for Mum. I can't help her because she lives 200 miles away and I work full time, but she's never had the opportunity to live for herself. Since she had me she's looked after me, helped when she could with my kids and then started caring for Nan. Now she isn't fit enough to do the travelling she wants when Nan dies.

It does feel like the government are forcing care to be provided by the family which feels very unfair given the fact most people are going to have to work FT until they reach their 70s meaning their parents are likely to die when they retire. How do you juggle both?

I feel sorry for your relatives.

Don't - mine are living caring people.

@iloveeverykindofcat I think you're right that care often creeps up on you rather than being a decision. Your sentence - 'But she's increasingly forgetful, depressed, stressed, anxious and catastrophising' - is a perfect description of my own DM, who may or may not have early dementia. At the moment I'm not really doing much caring at all - I work full time and live a 3 hour round trip away, so I've just been increasing phone calls and visiting when I can. Right now, it's my dad who is the one most affected, so I'm trying to provide more emotional support. And my parents are adamant that they don't expect any more from me, they want me to live my own life etc.

But - I'm very conscious that if my dad were suddenly not on the scene, or were unwell himself, that things could change quite quickly (and he's aged 80 with high blood pressure, so you never know). Mum's always said that she only lives where they do because of dad - if it were up to her, she'd move near to me. If dad died, I don't think mum could manage to live independently now - she's too anxious, she has zero idea about paperwork or practical house stuff, she's beginning to lose skills like cooking. Emotionally, I don't think she'd have much support locally - her closest friends have died or moved away and she never really socialises except via my dad. The 'obvious' solution would be for her to move into some form of retirement accommodation near to me, and I think that's what she'd want to do. And from then, I can very easily see a pathway of gradually increasing care.

I want to support both my parents, but I do also worry about the road ahead.

@tobyj going through this with my in-laws right now. FIL died in April. Wouldn’t put any LPA’s in place for either himself or MIL who now had advanced dementia and is a 5 hour round trip away in a nursing home placement via emergency measures from SS. Pension companies are a special fucking circle of hell of their own, applications to the COP to be able to make decisions for MIL use not only an entire forest but every available ounce of strength to deal with. I’m so angry that a lot of this admin now falling on DH’s shoulders was entirely avoidable from a stubborn old man who knew he was leaving behind a huge mess and zero details of provisions made for his wife. Accessing funds urgently needed to provide care is just a minefield when dementia is at play. Meanwhile, the care fees rack up and no one knows how much income MIL might have to fund it all or how long she’ll need the funding. It’s all well and good looking at lovely care homes at £1500 per week but if life expectancy is another 10 years (quite possible, no one knows) that is £1.5m which she most certainly doesn’t have and who knows what the more budget end of care homes look like?

why can’t they rent out the family home to pay for the care home costs Because they wouldn’t be worrying about care costs if the family home were the size of mansion which could attract enough rent to cover care costs.

You’re making everything sound simple. That’s why I don’t believe you have been in the same situation.

i dont mean literally children but its how the saying goes..
you do come full circle when you get old , you need to be looked after in the same way a toddler would need and you forget things, and you regress
i dont know your reasoning for how you feel but hopefully things will go well for you after your family member goes into a home and you can think clearly again

id like to think its the stress talking, when you say that old people are a drain on resources and they should just be euthanised or hurry up and die
so horrible , a horrible way to think
thank God that there are still people who want equal treatment for all
or we would be in trouble
would you say the same about disabled people or sick people, are they also burdens who need to hurry up and go?
no
covid really opened my eyes about some people, many people were sacrificed for the "greater good", including old people
it is worrying

given the fact most people are going to have to work FT until they reach their 70s meaning their parents are likely to die when they retire. How do you juggle both? I’m probably misreading this, but most people on here are still working and with dependent children. Or did you mean “before they retire”?

It’s not a piece of cake caring for an elderly parent when you’re in your 70’s. You may have more time, but the energy levels and physical strength are lacking, and the elderly person’s medical appointments are on top of your increasing number of appointments not to mention any of your partner’s. Maybe easier then juggling work and children but every age has its problems.

Im not going to give so many details about my situation because I dont need to prove anything
Im also not a christian, so you are just full of assumptions in your comment

I do find it funny how any time God is mentioned , it becomes accusations of being "sanctimonious/godly/smug/preachy"
I said one short sentence and that was that, I have to pray for strength to get me through hard times, how is that being smug?
get over yourself ,
it is actually YOU who sounds like they are on a high horse
and you sound like you need a prayer too, why does the mention of God get you so triggered and riled up ?

Maybe the OP does need God and prayer in her life , people are not meant to do things alone

and who knows what the more budget end of care homes look like? They may not look as good, but cost and quality aren’t necessarily related. Good manager and happy staff is more important than facilities.

The political will I think is more to blame, to be the party that sticks it's head up and says enough is enough - can you imagine that ever happening but it so needs to

It will NEVER happen, unfortunately.

OP I am grateful to you for starting this thread.

@MereDintofPandiculation i don’t mean aesthetically I mean in terms of reasonable care,staffing, facilities, activities. Have you visited any care homes lately? It is a very different experience from home to home even at the same budget level. Not all ‘dementia specialists’ offer the same experience for residents. My MIL is in an emergency placement care home that is ‘over the local SS budget’ by a couple of hundred per week. It is priced at £1050 per week. Residents do not routinely go outside unless a visitor takes them. Which is bad luck for those without visiting friends or families. There are No en-suite facilities. MIL is generally dressed in random clothes that are not her own and she’s had a lower dentures taken by another patient which now means the experience of the OP above, 5-6 visits to the dentist involving a 5 hour round trip for the family each time and not at weekends when dentists aren’t open for this sort of work. The care home cannot do this on their budget and without access to her own money, we can’t move her nearer to us either. This is the reality and why it is non stop.

Congratulations to those above who are delighted to care for relatives but in the real world where ‘care’ is beyond a visit to the shops or popping in to help with a plumber. It is never having a day off. You cannot possibly hold down a FT job at the same time. It is never having a holiday. For years.

Unfortunately your lack of empathy and Christian charity are not good adverts here for anyone to 'find God'.

You're the only person on the thread to have overtly mentioned God and prayer, that I can see. You've also been the most judgemental and least understanding of the OP's (and others') situation.

Maybe reflect on that?

Have you visited any care homes lately? No I have never visited a care home. My father is in a nursing home so I have visited a nuring home in excess of 300 times over the last four and a half years. He has limited access to the outside and is not in an en-suite room. That is unimportant when he needs help with toileting. On the other hand the laundry lady recognises everyone's clothes even if the label has come off, all the staff know him and how he likes things done, the manager has gone out of her way to set up things that make life happier for him. This is why I say that a good manager and happy staff is important, and this is not necessarily correlated with cost. You do not guarantee a good home by paying more, conversely you can find a home where your aged relative is happy and well cared for even if you are looking for something that comes within the Council rate.