Dementia

Strange how this thread has been bumped onto the first page today of all days. Time to post my own experience with this bastard thing. Have finally had to admit defeat and place my parents in a care home this very afternoon. Absolutely broken. They've been declining for a good while now. My dad with Parkinson's led dementia which has seen him go from a strong, healthy proud man to basically nothing in a matter of a couple of years. My mum has been following along behind on his journey a couple of steps behind but has also noticeably fallen away in the last 12 months. We've tried everything to keep them at home for as long as possible with care support in place but my dad had a fall about a month ago which required a hip replacement op and a couple of weeks in hospital. Since then its become very clear very quickly that the care package in place was far from adequate and we had to make the decision to move them. Not in a great place tonight if I'm honest (me that is, not them, where they are seems lovely!). Obviously everyone on here seems to have their own individual (and yet strangely similar) stories so I know I'm not unique but nice to be able to vent for a minute.
 
Bluemoon dan said:
Strange how this thread has been bumped onto the first page today of all days. Time to post my own experience with this bastard thing. Have finally had to admit defeat and place my parents in a care home this very afternoon. Absolutely broken. They've been declining for a good while now. My dad with Parkinson's led dementia which has seen him go from a strong, healthy proud man to basically nothing in a matter of a couple of years. My mum has been following along behind on his journey a couple of steps behind but has also noticeably fallen away in the last 12 months. We've tried everything to keep them at home for as long as possible with care support in place but my dad had a fall about a month ago which required a hip replacement op and a couple of weeks in hospital. Since then its become very clear very quickly that the care package in place was far from adequate and we had to make the decision to move them. Not in a great place tonight if I'm honest (me that is, not them, where they are seems lovely!). Obviously everyone on here seems to have their own individual (and yet strangely similar) stories so I know I'm not unique but nice to be able to vent for a minute.
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Must be tough that. My wife’s dad has Parkinson’s related dementia and he is similar. Massive decline over the last couple of years and struggling now although his wife thankfully is still ok so looks after him at home.
 
Bluemoon dan said:
Strange how this thread has been bumped onto the first page today of all days. Time to post my own experience with this bastard thing. Have finally had to admit defeat and place my parents in a care home this very afternoon. Absolutely broken. They've been declining for a good while now. My dad with Parkinson's led dementia which has seen him go from a strong, healthy proud man to basically nothing in a matter of a couple of years. My mum has been following along behind on his journey a couple of steps behind but has also noticeably fallen away in the last 12 months. We've tried everything to keep them at home for as long as possible with care support in place but my dad had a fall about a month ago which required a hip replacement op and a couple of weeks in hospital. Since then its become very clear very quickly that the care package in place was far from adequate and we had to make the decision to move them. Not in a great place tonight if I'm honest (me that is, not them, where they are seems lovely!). Obviously everyone on here seems to have their own individual (and yet strangely similar) stories so I know I'm not unique but nice to be able to vent for a minute.
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Sad to watch mate, take care of yourself and I know it sounds cringy but remember the laughs, the fun times the man who brought you up
 
Bluemoon dan said:
Strange how this thread has been bumped onto the first page today of all days. Time to post my own experience with this bastard thing. Have finally had to admit defeat and place my parents in a care home this very afternoon. Absolutely broken. They've been declining for a good while now. My dad with Parkinson's led dementia which has seen him go from a strong, healthy proud man to basically nothing in a matter of a couple of years. My mum has been following along behind on his journey a couple of steps behind but has also noticeably fallen away in the last 12 months. We've tried everything to keep them at home for as long as possible with care support in place but my dad had a fall about a month ago which required a hip replacement op and a couple of weeks in hospital. Since then its become very clear very quickly that the care package in place was far from adequate and we had to make the decision to move them. Not in a great place tonight if I'm honest (me that is, not them, where they are seems lovely!). Obviously everyone on here seems to have their own individual (and yet strangely similar) stories so I know I'm not unique but nice to be able to vent for a minute.
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Been down that route mate.
Let me tell you, you did your absolute best to let them stay at home just like we did but eventually it isn’t enough.
We took that step a year ago. Our tipping point was she was going walk about in the early hours. Twice she was brought back by neighbours. The final time she was found by a taxi driver as she walked down the middle of a main road looking for a long dead cat. At the time we were gutted but our family member has thrived. Gets the 24 hour care she needs, properly supervised meals, loads of, stimulating activities, doctors on call at any time. She’s even put on weight. It took a hell of a lot of stress away from us and regular visits confirm we did the right thing for her. But I feel for you. It’s a bastard of a disease for all concerned. I hope a year from now you will feel the same as us.
 
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Bluemoon dan said:
Strange how this thread has been bumped onto the first page today of all days. Time to post my own experience with this bastard thing. Have finally had to admit defeat and place my parents in a care home this very afternoon. Absolutely broken. They've been declining for a good while now. My dad with Parkinson's led dementia which has seen him go from a strong, healthy proud man to basically nothing in a matter of a couple of years. My mum has been following along behind on his journey a couple of steps behind but has also noticeably fallen away in the last 12 months. We've tried everything to keep them at home for as long as possible with care support in place but my dad had a fall about a month ago which required a hip replacement op and a couple of weeks in hospital. Since then its become very clear very quickly that the care package in place was far from adequate and we had to make the decision to move them. Not in a great place tonight if I'm honest (me that is, not them, where they are seems lovely!). Obviously everyone on here seems to have their own individual (and yet strangely similar) stories so I know I'm not unique but nice to be able to vent for a minute.
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Sorry to hear that, we are in a very similar place with our in-laws where we are trying to keep them in their house by piling in more and more care, but we aren’t far from the tipping point and guess it’ll take a similar situation like happened to you with a fall or something of that ilk to force the issue.

Hope you don’t mind me asking, but have you managed to get them into a home as a couple? Or is it a home where they are in separate rooms? This is something we are aware will make it difficult, and not sure on best way forward when inevitably the time arrives soon.
 
Bluemoon dan said:
Strange how this thread has been bumped onto the first page today of all days. Time to post my own experience with this bastard thing. Have finally had to admit defeat and place my parents in a care home this very afternoon. Absolutely broken. They've been declining for a good while now. My dad with Parkinson's led dementia which has seen him go from a strong, healthy proud man to basically nothing in a matter of a couple of years. My mum has been following along behind on his journey a couple of steps behind but has also noticeably fallen away in the last 12 months. We've tried everything to keep them at home for as long as possible with care support in place but my dad had a fall about a month ago which required a hip replacement op and a couple of weeks in hospital. Since then its become very clear very quickly that the care package in place was far from adequate and we had to make the decision to move them. Not in a great place tonight if I'm honest (me that is, not them, where they are seems lovely!). Obviously everyone on here seems to have their own individual (and yet strangely similar) stories so I know I'm not unique but nice to be able to vent for a minute.
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You may find they find happiness in their new environment. I really hope they do mate. For them and you.
 
Thank you to everyone for the nice comments on my post. Only put it here a couple of hours ago when I was a bit low but feeling better and actually reassured that we've done the right thing already now so yeh, thank you.

Rammy Blue said:
Hope you don’t mind me asking, but have you managed to get them into a home as a couple? Or is it a home where they are in separate rooms? This is something we are aware will make it difficult, and not sure on best way forward when inevitably the time arrives soon.
Click to expand...

In regards to this, funnily enough one of the final pushes to make the decision came from a home that we all liked having a large downstairs room available. Consequently we've been able to move them as a couple which is what we wanted (they celebrated their golden wedding in 2022 just before the first diagnosis came so separating them was not something we wanted to do). Those sort of rooms dont come available often as the vast majority are singles so we jumped at it.
 
For anyone with parent(s) or relative(s) nearing the point where they need a care home, make sure you get as much evidence as possible that they have a “primary health need” that cannot be met simply through what the LA can provide.
If you can provide sufficient evidence of a primary health need the CHC must fund it. Start gathering as much information as possible and get as many reports as possible from all the relevant professionals- GP, McMillan, OT etc.

Make sure you’re fully au fait with the criteria. Link below. I took absolutely everything- no matter how insignificant- to my dad’s review. Don’t be fibbed off - they’ll try and say they can do the assessment without you. Be the voice your parent / relative needs / deserves.

www.gov.uk

NHS continuing healthcare checklist

Screening tool to help identify individuals who may need a referral for a full assessment of eligibility for NHS continuing healthcare.
www.gov.uk www.gov.uk

It could be the difference between the parent / relative / you paying out tens of thousands of £ and getting it fully funded.
Start building your evidence early. And thoroughly. I speak from personal experience. I was an absolute pain in the arse for the assessor - they’re used to people : not being there, , not understanding the criteria, not understanding/ knowing the criteria.
Be armed with all you have. And be an absolutely well informed/ I know my stuff representative for your nearest band dearest.
 
Bluemoon dan said:
Strange how this thread has been bumped onto the first page today of all days. Time to post my own experience with this bastard thing. Have finally had to admit defeat and place my parents in a care home this very afternoon. Absolutely broken. They've been declining for a good while now. My dad with Parkinson's led dementia which has seen him go from a strong, healthy proud man to basically nothing in a matter of a couple of years. My mum has been following along behind on his journey a couple of steps behind but has also noticeably fallen away in the last 12 months. We've tried everything to keep them at home for as long as possible with care support in place but my dad had a fall about a month ago which required a hip replacement op and a couple of weeks in hospital. Since then its become very clear very quickly that the care package in place was far from adequate and we had to make the decision to move them. Not in a great place tonight if I'm honest (me that is, not them, where they are seems lovely!). Obviously everyone on here seems to have their own individual (and yet strangely similar) stories so I know I'm not unique but nice to be able to vent for a minute.
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My parents are on a similar path. My Dad is quite bad but has my mum to constantly keep him occupied and out of trouble. It's a big drain on my mum, without her my dad would deteriorate rapidly, so the future is looking bleak.

My grandad went a similar way. He ended up in various homes. Eventually in one that had a locked door policy on the basis he would constantly be walking out to 'head home' at all times of day and night. Awful disease.
 
Bluemoon dan said:
Thank you to everyone for the nice comments on my post. Only put it here a couple of hours ago when I was a bit low but feeling better and actually reassured that we've done the right thing already now so yeh, thank you.



In regards to this, funnily enough one of the final pushes to make the decision came from a home that we all liked having a large downstairs room available. Consequently we've been able to move them as a couple which is what we wanted (they celebrated their golden wedding in 2022 just before the first diagnosis came so separating them was not something we wanted to do). Those sort of rooms dont come available often as the vast majority are singles so we jumped at it.
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I cried a million tears when dad had to go into care home. But he’s in the best place. For him. And the family. It’s a massive shock at first - my mum dad had been together for 58 years but he now gets 24hr superb care. And mum has her quality of life too.
 
johnnytapia said:
For anyone with parent(s) or relative(s) nearing the point where they need a care home, make sure you get as much evidence as possible that they have a “primary health need” that cannot be met simply through what the LA can provide.
If you can provide sufficient evidence of a primary health need the CHC must fund it. Start gathering as much information as possible and get as many reports as possible from all the relevant professionals- GP, McMillan, OT etc.

Make sure you’re fully au fait with the criteria. Link below. I took absolutely everything- no matter how insignificant- to my dad’s review. Don’t be fibbed off - they’ll try and say they can do the assessment without you. Be the voice your parent / relative needs / deserves.

www.gov.uk

NHS continuing healthcare checklist

Screening tool to help identify individuals who may need a referral for a full assessment of eligibility for NHS continuing healthcare.
www.gov.uk www.gov.uk

It could be the difference between the parent / relative / you paying out tens of thousands of £ and getting it fully funded.
Start building your evidence early. And thoroughly. I speak from personal experience. I was an absolute pain in the arse for the assessor - they’re used to people : not being there, , not understanding the criteria, not understanding/ knowing the criteria.
Be armed with all you have. And be an absolutely well informed/ I know my stuff representative for your nearest band dearest.
Click to expand...
Sent you a pm mate.
 
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