How long does this hell go on for?

Several years ago my aunt and uncle went into a care home that had some double rooms. Aunt had dementia, uncle didn't. Have you considered finding something similar?

I’ve tried to find a link to the name label machine. It might be micro stitch gun. Let me know if you want a link.

When Mum was in rehab one of the other patients was always giving away other patients clothes! It disturbed everyone. It was worth it.

I hear you...oh the guilt will be off the scale. I'm currently trying to speak to SS about putting DM into a care home for 2 weeks respite so DF can have a break. We've not told DM yet (she wouldn't even remember any conversations about it) so I'm parking the guilt until we have that discussion; not something I'm looking forward to as she was quite difficult when we last did it around 18 months ago. 😑I'm glad you've found somewhere suitable though and once she's in there, you'll see she's being cared for appropriately and you'll be able to bring your shoulders down away from your ears a bit hopefully!

Let us know how things go for you x

That guilt!!!!

Two hours ago I said goodbye to Mum in her care home. Mum is not happy but the home is good. Mum would not be happy if she was in the Ritz. She wants to be at home but is not safe.

I am glad you have found somewhere you like/can trust. Don’t forget to start the respite early enough to iron out any hiccups before you go to hospital. On a practical level, labels for clothes are important. My sister has a little machine and orders printed name tags. Mums home is small enough that the laundry are good at identifying what belongs to whom. Apparently her tall FIL was always wearing someone else’s trousers when they visited.

Know that you are not alone.

@UnitaBath
How are you doing? How's things?

One of the most extreme ironies to me is by the time DPs finally did end up in a care home, my entire life was decimated. I have gone from a professional well paid job to part time at a little bit over minimum wage. Unless there is anything left for me to inherit, I won’t have the funds to allow the choice of a care home when I want it, but will have to wait until the state deems I need one, effectively impacting DS in the future as well. Hopefully the recent stress means I won’t live so long.

This is a good point about vaccinations. I always said yes because my mum was very pro-vaccine but now I look back and think that was a mistake given the circumstances.

And this is why I resigned from social work. I had spent many years working hard to improve the lives of many disadvantaged people and then I found myself turned into a financial gatekeeper for the local authority - no thank you!

I appreciate the argument that the home owner should pay their own care home fees but what really riles me is that often for many years before a care home is finally needed the government do not take into consideration the amount of blood sweat and tears family members put into the care of their relative , ending up on their knees with nothing left to give.
Often with nothing or very little money left over to make the awful situation just that little bit less awful knowing at least there is a little something to look forward to.
I completely agree that many elderly people are just kept going in a state of existence, absolutely horrific for all involved .
I am currently watching the slow demise of my remaining parent , i find it hard fitting their needs around my own busy life and i admit to finding it a chore.
I think it will be a relief for them and us when their time comes ,however i feel guilty saying this.

I relate to this - when helping my grandads cousin who needed a care home i had a social worker call me ,we had never met or spoken before and she said to me 'can you not pay or is it that you don't want to pay' .
I was quite taken aback !

I am so sorry OP, its really tough
I lost my Mum to Parkinsons a couple of years ago but she deteriorated very quickly in about 3 or 4 months and then died sudenly in bed in her sleep. She had carers in and was really starting to lose quality of life and interest in anything and I was dreading the future (she told me she was too)
While I grieved I was very glad she went when she did in the circumstances she did and I am so sorry you don't have the same peace

Yes don’t honestly it will kill you more. Put it in a box in your head.

Oh and I remember my DH getting an email from one home asking ‘What is the reason you can’t pay the top up fees?’ He was so beaten down by then he could only muster this reply ‘Because I can’t afford it’ 😂

You absolutely must research top up fees. Most care home contracts have a sneaky clause that says when your relative’s money runs out, and the LA takes over funding them, YOU as their relative have to pay the difference between the private rate and the LA rate.

Each LA has a maximum they will pay per week. For example, where I live it’s £900. So if the care home is £1400 per week, I have to pay the extra £500 per week (until my DM dies). Most homes don’t let the private funder in the home until you have signed to say YOU will pay this money when the private funds run out.

I once asked a home where did they expect me to find an extra £2000 per month from, indefinitely, to pay my DM’s top up fees. Without a flinch in their face the manipulative reply was, “We find that children want their parents to have the best care so I suggest you ask everyone in the family to contribute”

At the same time, I had an identical conversation with the nursing home my DMIL is in.

The government should never have allowed the care sector to go to private investors. Most care homes are now part of offshore portfolios. It’s big business and they make millions.

So even though my DM is a private funder, and they will take almost all of her life assets, she’s in the only home I could find that does not have top up fees. This means when her money runs out, which is will do quite soon, that she won’t be forced to leave. I could have gambled and put her in a nicer home, hoping she passed naturally before her money runs out. But with dementia it can easily go on for years and years, and I felt it would be more distressing for her to be moved away from carers she would have learnt to know and trust by then.

Yes the end of life care is important. My relative died in her room in her home with a staff member who had known her for years holding her hand. I couldn't go to her, she was over 100 miles away and I'm my husband's carer, but they phoned me several times that evening and through the night. That care home was her home, the staff were the people who knew her needs best by the end. Did it cost? Yes it did, do I regret the inheritance I might have had? Not for a minute.

I think levels of care can vary. I remember my grandfather's being in homes in the 70s. One had fantastic care in a lovely home but the other was in a very grim place. One of the saddest things I remember is him saying he wished his decline was mental not physical as then he wouldn't understand the hell he was living in. My relative who recently died was in a fantastic home, the care was everything you could wish for. She had the same named carer for ten years which I think speaks volumes.

When DM was in hospital for a fall associated with her dementia (attempting to get up when unsupervised) I was shocked how much persuasion the care team needed to agree that she needed a care home. I was told “we will tell her not to get up between visits”. Like I had never thought of that! No I had watched on the camera how she was attempting to sit on her wheeled trolley instead of her chair. When I was staying with her telling her to stay in her bed she replied that she would do it but “ha ha as soon as you leave I will get up if I want”. She had already fallen 6 times in 4 months.

It was only because she was self funded and we had POA that she stayed in that home.

I was sorry that she was not going to the high price five star home that was really local. We had to turn it down because they had a policy of kicking you out if they could not meet your needs (like for end of life care). At the top of my list for requirements was that the home cannot be temporary - they agree to end of life and if mum runs out of money the council will take over her care

I would strongly suggest that those of you concerned about the financial aspect of all this go onto the Age UK website where there is a detailed run-down of how the finance for care works, including top-up fees and the possibility of Continuing Health Funding from the NHS. If you want full details on the latter then Beacon is the way to go: beaconchc.co.uk

My late OH finished up in a very expensive nursing home, but I was determined he should have the best. I finished up paying a "top-up" which in truth was over 80% of the real cost and I dwindled our savings away in order to do this. In fact I got the money back eventually by appealing the two refusals for CHC funding.

I am glad that Andy Burnham is planning to take a proper look at this - politicians have long ducked the issue and left us in our current mess. My deep objection to the whole system is the sheer unfairness, particularly where someone is unaware (or given wrong information about) the CHC funding rules. In addition I do think that the quality of care has gone down since it was all privatised. I worked in the system before and the quality was much higher with proper staff training, support, conditions and scrutiny.

I am so sorry for all of you trying to deal with this horrible situation. I am at the other end of the proceedings as I gently and gradually slip towards the (I hope fairly distant) prospect of becoming the burden that you are all facing. Serious heart and other problems hit me relatively young and the writing is on the wall for me. My strong desire is that my lovely AC should not go through the hell that many here are experiencing - but I wonder how I can achieve that .........