So is this it...?
- Thread starter DesperateofDevon
- Start date
Firstly I am so sorry for your loss & also
I’m so sorry that you & your poor Dad went through this awful experience. Was the CQC notified & safeguarding issues raised by the coroner?
I hope you are able to remember your lovely Dad I’m healthier times, sending (((((((((((hugs)))))))))
Thank you for sharing your painful experiences with me, I really appreciate how difficult a situation you found yourself in.
Today’s the day of the meeting... so am I prepared??
Yes I think so... I have spent all yesterday collating & cataloging Dads health issues.
it’s made me realise that the care home haven’t a clue, neither them or the district nurse!
Dads medical History is interesting as the home seem to have omitted the majority of it! Including the fact that he doesn’t have all of his own teeth!!!!
How scary is that! That means the plate has been in place for twelve months!!!
So I have printed off all the relevant medical history - that the surgery felt as POA didn’t need redacting!
The pain relief - co codamol the home kept giving my Dad was prescribed to firm his stools........not as pain relief!
the rest of the records .... not so enlightening!
fortunately my mum didn’t burn all Dads medical paperwork & now I have
the history of pain clinics & appointments & investigations for the back & shoulder issues is well documented.
The medical issues & investigations into stomach, kidney issues again well documented.
the thrombosis, hospital admission with a pulmonary embolism noted on medical history at appointments!
so I’ve stickered & noted all my evidence so I can cross reference & prove Dads care needs have increased.
also found last years CHC checklist filled in by the social worker.... I’d forgotten that existed. So using its criteria did the checklist erring on the positive.
Dad should easily qualify for CHC funding, so why haven’t the home applied? He just missed getting an assessment last time
Of course considering the home didn’t think he qualified for a SALT assessment & told the SALT team that, I’m not surprised that they haven’t done the CHC funding checklist!
So I have no idea what to expect today , I’m expecting a battle & if not then I will be pleasantly surprised!
Yes I think so... I have spent all yesterday collating & cataloging Dads health issues.
it’s made me realise that the care home haven’t a clue, neither them or the district nurse!
Dads medical History is interesting as the home seem to have omitted the majority of it! Including the fact that he doesn’t have all of his own teeth!!!!
How scary is that! That means the plate has been in place for twelve months!!!
So I have printed off all the relevant medical history - that the surgery felt as POA didn’t need redacting!
The pain relief - co codamol the home kept giving my Dad was prescribed to firm his stools........not as pain relief!
the rest of the records .... not so enlightening!
fortunately my mum didn’t burn all Dads medical paperwork & now I have
the history of pain clinics & appointments & investigations for the back & shoulder issues is well documented.
The medical issues & investigations into stomach, kidney issues again well documented.
the thrombosis, hospital admission with a pulmonary embolism noted on medical history at appointments!
so I’ve stickered & noted all my evidence so I can cross reference & prove Dads care needs have increased.
also found last years CHC checklist filled in by the social worker.... I’d forgotten that existed. So using its criteria did the checklist erring on the positive.
Dad should easily qualify for CHC funding, so why haven’t the home applied? He just missed getting an assessment last time
Of course considering the home didn’t think he qualified for a SALT assessment & told the SALT team that, I’m not surprised that they haven’t done the CHC funding checklist!
So I have no idea what to expect today , I’m expecting a battle & if not then I will be pleasantly surprised!
Palliative Care.. have a print out from A& E on the prescription for oromorph that states .... Palliative Care at the home.
How much more evidence do you need to get the home to admit that end of life comfort care is now all that can be done for Dad?
How much more evidence do you need to get the home to admit that end of life comfort care is now all that can be done for Dad?
Yes there were a LOT of safeguarding issues raised by the Coroner and CQC were informed.! I’m actually profoundly deaf and although the coroner tried to cater for this there were quite a few sections I didn’t get the full details on. But she was doing an admirable job thankfully - manager of nursing home was being verbally ripped to shreds re situation - even the paperwork she brought in was inaccurate. I’m just relieved he’s out of pain and that place - sure I regret I couldn’t get him out as my sister wouldn’t consent but know I tried my best for him throughout. All you can do really ♂️
it’s a difficult situation, we can’t move Dad as he’s council funded by another area; so frustratingly we need to follow the process.
today’s meeting I’m not sure really what will be achieved as the home & district nurse say Dads more able than he is. As repeated requests for assessments have been deemed unnecessary by the home, district nurse & they have documented as such we are battling to prove the issues Dad has.
At least now a proper SALT & OT assessment is booked this week to take place.
What do I want the outcome to be... I just want the correct level of care in place & for Dad to be pain free & have dignity- all stayed in his care plan.
if no one tells you the options available in a care package how can you know what a satisfactory outcome is?
I find this process frustrating as the professionals should know what should be in place care wise as dementia progresses. it shouldn’t be down to the family to source information on what is required to provide the care agreed on a care plan.
I still think that there will be a closing of ranks today , I just have a sinking feeling. Probably not helped by my husband playing devils advocate & shattering my veneer of confidence. So I’m going to try & be positive but at the moment I can’t stop the tears.
Well I would love to tell you that the days I spent collating evidence were worth while!
I left mid meeting in tears.
My Daughter & Husband were brilliant & I was obviously the issue so leaving was the only sensible option. Sadly in tears.
I left mid meeting in tears.
My Daughter & Husband were brilliant & I was obviously the issue so leaving was the only sensible option. Sadly in tears.
Sending lots of hugs @DesperateofDevon , I’m sorry you felt that way after all your hard work but glad hubby and daughter took over the baton . You can’t have done anymore than you have . Please cut yourself some slack and take care . X
I am trying to but feel as if I’ve let my Dad down by not being able to resolve his care needs.
I am stepping back as my M.E is flaring up & complete bedrest isn’t an option at the moment. So it needs to be an easy week!
X
You haven’t let him down at all , you haven’t stopped fighting for him @DesperateofDevon but and it’s a big BUT you have to take care of you too or you won’t be able to carry on the fight . A few days away to rebuild strength is a necessity . Please show yourself the same love kindness and consideration as you do everyone else ! X
thank you that’s a lovely thing to say. I’m going to focus on work, I have Ru Paul’s Drag race on in the back ground - it makes me giggle a lot!
Strange what appeals when you are at your wits end....
Sorry to hear that you had such a distressing time at your meeting, but good to hear that other members of your family were there to support too. Hoping that your dad's needs will get sorted soon xx
I actually have no faith in the system anymore. I’m a coward & cant face anymore hostility from the care home. So I’m waiting to recharge my batteries before going in.
That's not coward @DesperateofDevon thats self preservation and needed to recharge. you have been worn down by the system and its so wrong. Families shouldn't have to be fighting for basic care and comorts in the last weeks/months of their family members life
Love my mum to bits but talking on the phone to her is tortuous at times; tonight I told her that her grandson had moved into his new flat , somehow that got turned into
...he’s moved in with a new chap!
Not sure his girlfriend would be too impressed but hey!
...he’s moved in with a new chap!
Not sure his girlfriend would be too impressed but hey!
it’s a system that sets you up to fail. You follow the rules & regulations & continually do your best - but the system doesn’t care about that. It’s about hitting targets & ticking boxes. The care element is dictated by finances. If you can afford good care then fantastic; but if you don’t have that financial advantage & the system won’t let you take advantage of CHC funding ... it’s a frightening lottery.
I’m disgusted that those making these decisions have the arrogance & assumed power & can disregard care plans etc. & be protected by the system that should be protecting the PWD !!!
My husband said the loveliest thing to me yesterday. He said “ don’t ever stop being you. Don’t ever change caring & being emotional about those you love. I never want you to change who you are.”
umm...that’s probably just as well!
umm...that’s probably just as well!
No I don’t either. I have no blind in the kitchen and just put up with the 4 weeks a year when I get blinded in the morning. Curtains stay open except in the dark of winter when OH is out. We are so lucky - small hamlet overlooking fieldsdo you think it’s a local thing??
