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So is this it...?

Crafts101

Registered User
Aug 22, 2019
40
thank you lovely I’m exhausted & either have insomnia or can’t keep my eyes open!

last night my old dog which has dementia ( nicknamed dementia dog!) managed to pull the curtain rail out of the wall in the early hours!! How you ask by repeatedly rubbing & pulling against the curtains!

so today I’m going to buy a new pair of shorter curtains & fill the holes in the wall!!
Ah yes the new DIY skills that you discover you have, when life throws a spanner in the works. Mums evening 'wrench' of the curtains in our kitchen is just waiting for the rail to come off the wall. It's part way there already. However, I have planned ahead and have the new one ready to go up. I could replace it now, but it's sort of become part of the evening ritual, mum tugging and me thinking to myself, why do it like that, you are going to pull the rail off!!!! It sounds awful to say, but I think in the midst of all this I have developed an unfortunately dark sense of humour. Though it maybe what is keeping me 'relatively' sane!
Hope the new shorter curtains work, and stay up for you! The winter months are now heading our way and the curtains will be being drawn far earlier now..... Ah well, the turning of the seasons. In all our madness, some things stay the same (or they used to). Xxx
 

MrsMop

Registered User
Oct 24, 2019
22
Have you had a palliative care/pain control management team assigned yet? Your local hospice might be able to help as they no longer only concentrate on cancer, and many have gréât knowledge of dementias. I hope you get some re-assurance and good quality input very soon.
 

Bikerbeth

Registered User
Feb 11, 2019
1,630
Bedford
I just hope that this thread will be used to stop others from going through this experience
Did you know you can self refer to your local CMHT?

no I didn’t, but I do now thanks to a lovely lady!

Learn something new every day my granny used to say...

just wish I’d known that little fact a couple of months ago...
Sorry - what is CMHT please ?
 

Woo2

Registered User
Apr 30, 2019
2,786
South East
Speech and Language Therapy . They assess for all sorts , food, fluids etc .

edited to say that’s quite a basic reply , they do lots of things . Time for sleep .
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Ah yes the new DIY skills that you discover you have, when life throws a spanner in the works. Mums evening 'wrench' of the curtains in our kitchen is just waiting for the rail to come off the wall. It's part way there already. However, I have planned ahead and have the new one ready to go up. I could replace it now, but it's sort of become part of the evening ritual, mum tugging and me thinking to myself, why do it like that, you are going to pull the rail off!!!! It sounds awful to say, but I think in the midst of all this I have developed an unfortunately dark sense of humour. Though it maybe what is keeping me 'relatively' sane!
Hope the new shorter curtains work, and stay up for you! The winter months are now heading our way and the curtains will be being drawn far earlier now..... Ah well, the turning of the seasons. In all our madness, some things stay the same (or they used to). Xxx
nothing wrong with a dark sense of humour mines pitch black at times!!
Have bought stick on blinds from Ikea for ease! Temporary fix that will probably be there for a couple of years.... need to redecorate bedroom ... so not happening with everything else going on at the moment!

is it wrong to say I actually no longer care if I have curtains or blinds.... I cannot be seen into & it just feels more open & pared back!
 

TNJJ

Registered User
May 7, 2019
1,788
cornwall
No it isn’t!I have blinds which are rarely pulled as I like light.I have curtains which just hang((lol))and are never pulled.Always makes me feel better.:)
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Have you had a palliative care/pain control management team assigned yet? Your local hospice might be able to help as they no longer only concentrate on cancer, and many have gréât knowledge of dementias. I hope you get some re-assurance and good quality input very soon.
no as the home keep saying it isn’t required & they give the GP updates to the same!

Have Dads redacted medical records... why they require editing I don’t know?
Anyway I have laughed at some of the medical history from the previous surgery... no mention of the many bin bag full of old medication that we took into the surgery to prove that Mum wasn’t capable. No mention of Mum knocking Dad of the bus, & him losing consciousness & Mum not wanting any help & then getting a taxi home, no mention either of Dad repeatedly being found on the floor at home, or Mum & Dad not getting out of bed for days, or Mum not ensuring Dad was fed as he was unable to understand how to eat?

no according to the old surgery apparently my Mum was an adoring devoted wife!

really don’t want to see a wife who is abusive then....

Actually feel like a am going to have a big list of issues to deal with one by one as appropriate to ensure care of dementia patients can not be allowed to be documented to suit those who have a duty of care.

instead of protecting PWD the current system is in place to ensure that the finance for dementia is placed firmly at the family’s door or social services. The unwillingness of certain medical practitioners to accept that it is medical care not social care needs is appalling.


The whole system needs an overhaul & I for one am going to start to shout loud & clear that this system sets out to fail those who cannot self fund. The put up & shut up attitude is intolerable, as I have stated again & again I would not treat an animal like this why on earth do others think it’s acceptable to treat a PWD like this ?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
No it isn’t!I have blinds which are rarely pulled as I like light.I have curtains which just hang((lol))and are never pulled.Always makes me feel better.:)
No it isn’t!I have blinds which are rarely pulled as I like light.I have curtains which just hang((lol))and are never pulled.Always makes me feel better.:)
do you think it’s a local thing??
;)o_O
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Speech and Language Therapy . They assess for all sorts , food, fluids etc .

edited to say that’s quite a basic reply , they do lots of things . Time for sleep .
I am always rattling off the abbreviations, apologies- it’s like learning a foreign language. actually alien language to most !
 

TNJJ

Registered User
May 7, 2019
1,788
cornwall
no as the home keep saying it isn’t required & they give the GP updates to the same!

Have Dads redacted medical records... why they require editing I don’t know?
Anyway I have laughed at some of the medical history from the previous surgery... no mention of the many bin bag full of old medication that we took into the surgery to prove that Mum wasn’t capable. No mention of Mum knocking Dad of the bus, & him losing consciousness & Mum not wanting any help & then getting a taxi home, no mention either of Dad repeatedly being found on the floor at home, or Mum & Dad not getting out of bed for days, or Mum not ensuring Dad was fed as he was unable to understand how to eat?

no according to the old surgery apparently my Mum was an adoring devoted wife!

really don’t want to see a wife who is abusive then....

Actually feel like a am going to have a big list of issues to deal with one by one as appropriate to ensure care of dementia patients can not be allowed to be documented to suit those who have a duty of care.

instead of protecting PWD the current system is in place to ensure that the finance for dementia is placed firmly at the family’s door or social services. The unwillingness of certain medical practitioners to accept that it is medical care not social care needs is appalling.


The whole system needs an overhaul & I for one am going to start to shout loud & clear that this system sets out to fail those who cannot self fund. The put up & shut up attitude is intolerable, as I have stated again & again I would not treat an animal like this why on earth do others think it’s acceptable to treat a PWD like this ?
That is awful! When anything gets edited I wonder what has been hidden.A lot by the sound of it:(
 

Crafts101

Registered User
Aug 22, 2019
40
nothing wrong with a dark sense of humour mines pitch black at times!!
Have bought stick on blinds from Ikea for ease! Temporary fix that will probably be there for a couple of years.... need to redecorate bedroom ... so not happening with everything else going on at the moment!

is it wrong to say I actually no longer care if I have curtains or blinds.... I cannot be seen into & it just feels more open & pared back!
Nothing at all, the days of closing the curtains or blinds to keep 'the world out/at bay' as it used to be for me have long gone. These days I'm so stuck in the house now so much that the more of the world I can see at any time the better. Even if that is other people's lights on in the wee small hours....... So it's not just me then.
Though today we get to venture out as mum has been hankering for a trip out, or so she says. At least the rain has now stopped so it's a possibility. And the parking blue badge arrived this week, so we can attempt to find a space and use it at least. I'll brace myself for the inappropriate comments and pity looks as m&s no longer lives up to mum's expectations!!!!! But then on the bright side we will be out of the house, together and my heart tells me I need to savour these times while I can. My patience though has other thoughts....... My head just tells me to view it as an adventure into the unknown?!
So big girl pants on, put on the 'war paint' and don't forget the umbrella - just in case!....... Wish me luck.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Nothing at all, the days of closing the curtains or blinds to keep 'the world out/at bay' as it used to be for me have long gone. These days I'm so stuck in the house now so much that the more of the world I can see at any time the better. Even if that is other people's lights on in the wee small hours....... So it's not just me then.
Though today we get to venture out as mum has been hankering for a trip out, or so she says. At least the rain has now stopped so it's a possibility. And the parking blue badge arrived this week, so we can attempt to find a space and use it at least. I'll brace myself for the inappropriate comments and pity looks as m&s no longer lives up to mum's expectations!!!!! But then on the bright side we will be out of the house, together and my heart tells me I need to savour these times while I can. My patience though has other thoughts....... My head just tells me to view it as an adventure into the unknown?!
So big girl pants on, put on the 'war paint' and don't forget the umbrella - just in case!....... Wish me luck.
wishing you luck!
Actually My mum is a big fan of Sainsbury’s clothing! The quality of jumpers & tops is excellent & cheaper than M&S plus in big stores they have an amazing choice - easier parking & the restaurants are light & airy ! it’s an easier shopping experience & better lit !
A possibility ??
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Nothing at all, the days of closing the curtains or blinds to keep 'the world out/at bay' as it used to be for me have long gone. These days I'm so stuck in the house now so much that the more of the world I can see at any time the better. Even if that is other people's lights on in the wee small hours....... So it's not just me then.
Though today we get to venture out as mum has been hankering for a trip out, or so she says. At least the rain has now stopped so it's a possibility. And the parking blue badge arrived this week, so we can attempt to find a space and use it at least. I'll brace myself for the inappropriate comments and pity looks as m&s no longer lives up to mum's expectations!!!!! But then on the bright side we will be out of the house, together and my heart tells me I need to savour these times while I can. My patience though has other thoughts....... My head just tells me to view it as an adventure into the unknown?!
So big girl pants on, put on the 'war paint' and don't forget the umbrella - just in case!....... Wish me luck.
But you can’t beat their big girl pants!!!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Tomorrow is the safeguarding enquiry meeting

So we still don’t know if the time has been officially changed......?
So 1pm we will be present as previously requested.
I’m nervous about keeping my temper under control given the latest attempts to discredit us.
a email from the home - staring Dad downstairs ( first time in months!) listening to music etc. Nice that he enjoys the music but he is happier listening quietly in his room reclined.

still the home are desperate to prove his abilities are greater than the reality of the situation so I can see why they are doing this... but ooooooh it makes me so angry!

Evidence Evidence Evidence!

that’s all I got folks , medical opinion has letDad down repeatedly !
 

Mojosho

Registered User
Sep 13, 2019
31
Well this afternoon a social worker called to say they have been allocated the case! it seems a community nurse has had a lot of input already & has been asking social services if she is named in the safeguarding?

since she went to the home & assessed Dad without our knowledge & then - told the old GP that dad didn’t require Butec patches last week ; & after cancelling our meeting weeks ago with her & telling me over the phone that there was nothing wrong with Dad & didn’t need extra funding...... I guess she’s brought herself into the whole safeguarding issue!

As the social worker said probably not the best clinical assessment seeing as paramedics & New GP have been called out & Dads on higher Butec patch & oromorph, with reduction in medication due to swallowing issues!

so I have requested that this community nurse isn’t part of a team meeting the social worker wants to call. As this nurse choose to disbelieve our concerns &informed the home of our concerns & together with the home management blatantly ignored Welfare & health issues.

so requesting
-SALT team assessment
-O/T assessment
-CMHT assessment

before team meeting

otherwise it’s back to our word against the homes observations. I feel without these assessments no one will believe us as I find it hard to believe this situation is happening myself.

I haven’t gone in today - I just don’t have the energy to keep pushing forward through all of this at the moment. yes I feel very guilty - I have let Dad down today but I can’t keep doing this alone. My confidence has hit rock bottom today & I have tried to keep myself busy but I can’t stop worrying about what’s to come.

The home are obviously not going to apologise or say hey we got it wrong let’s learn from this. The closing of ranks was obvious yesterday with staff making were they stood clear. ( I kept being told my Dad had a good appetite & had no trouble eating food- as he sat with a big plate of food infront of him & no idea what to do with it!)

the home are saying their is no record of falls or Dad attacking anyone. I can’t believe yet again I have to prove I’m telling the truth... so my family will have to become more involved & give statements as to what they have seen & experienced.

this situation has been going on for weeks now it’s only the intervention of an advocate that has led to today’s action by the safeguarding team. Otherwise we would still be struggling to get anyone to take action. yes I have that confirmed by the social worker that the big guns contacted them & all of a sudden we have action.

I don’t want to compromise Dad by not having all the medical evidence to hand to prove the seriousness of his condition. The care home have badly let him down with ignoring his medical history & the family concerns.

yesterday the request for a GP by the care home & them not letting us know demonstrated their arrogance & lack of compliance with the CQCs rules & regulations; the care home has an outstanding ( I would have previously agreed ) & best practice award.

the huge changeover of staff isn’t a good sign in the past couple of months.

I am dreading having to go through this process - I don’t feel that we have any options open to us.
Where do you go to ensure you get the right treatment? It's a minefield! I wanted so much to look after my husband at home but on Wednesday afternoon he had four falls and after the last one I had to 999 as I couldn't get him up. He was a dead weight. The duty doctor ordered antibiotics for him that day without seeing him as he was sure he had an infection! In hospital a doctor took him off heart medication because he must have been light headed! I kept telling them that my OH has dementia and can't even remember falling. I also told them his legs buckled and he couldn't stand. On Friday they triumphantly declaring he was fit to go home because his blood pressure had gone up. Then he was discovered in the staff toilets trying to go home in his hospital pyjamas! Something must have happened overnight as when I saw him yesterday it was all changed. He is going to be assessed firstly for mobility. I haven't seen anyone on the dementia team yet but hope so tomorrow. His heart needs checking too as his pacemaker battery is running out. So is this it? I don't know yet. But I think I'm prepared!!!!!
 

Dare

New member
Oct 27, 2019
7
I empathise- after visiting 17 nursing homes I thought I’d found a good one, first month was great. Then after my sister signed too - it all changed. Every visit I found nurses having extended “meetings” and ignoring residents. They ignored all aspects dad was interested in even though I wrote down things and highlighted tv programmes. I had to show them how to get subtitles on the TVs as most residents couldn’t follow programmes without them. As time passed I frequently found dad struggling to the toilet alone and helped him. He had numerous falls there. They lied about his sleep - after one fall he ended up in hospital where they were concerned about how much pain he was in unconnected with fall injury and not sleeping!
I even had to contend with a bullying nurse who insisted I was an alcoholic - I’m teetotal! If she had spent the same time doing her job there might have been some happy residents! After one particularly daft time with her more interested in me than resident care i demonstrated my medical knowledge and proved why what she was saying was bs. But I was aware that she had been the one lying re dad sleeping better... so had to be careful as didn’t want dad to suffer more at her tender mercy .
He had another fall and no one seemed concerned bad me. Despite repeated requests then demands why not been see at hospital they were making him walk to wheelchair and for the toilet. Eventually after 14 days of no action I’d had enough and once at hospital it was proven he’d broken his repaired hip again. Unfortunately those 14 days shortened his life. The home insisted they were able to care for his needs and got him returned. From being in hospital where they’d help move him to sit in a chair during the day as more comfortable - they just left him in bed. When sat his legs straightened. But in bed his right leg doubled up right under his hip. Despite repeated attempts I was told that they were having a physio to help (them as it turned out as they didn’t know how to use the equipment properly)
That Christmas Day I knew would be our last and went there expecting as arranged to join him for dinner along with other residents, I was told that they didn’t like seeing him in pain so he wouldn’t be going. So I replied “so it’s alright to walk past his room knowing he’s in more pain in bed - as long as you don’t see it then?” The staff member admitted I had a point! I contacted the hospital consultant and got them to speak to the head nurse re better he was up in a chair. After the call they said if dad took pain relief meds he could get up. Despite not liking it he took it as I told him they’d let him get up. They then said they’d changed their mind and he wasn’t getting up.
It was an awful experience and he died, very logically as he always was, on the last day that year, New Year’s Eve. I spent the last days with him staying in the chair there, we had a coroner’s inquest and I’m glad to say the home was rapped over the knuckles re several issues. They talked of training - the coroner replied “you are not understanding - the recommendations I have made start on your return to the home today and it will be being monitored”
Whilst my dad suffered unnecessarily- I’m praying no other resident goes though the same hell as a result of the very astute coroner.
 

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