1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I’m trying not to be angry!
    So I asked my daughter yesterday afternoon would she go in to see if Grandad was being put to bed after lunch as had been repeatedly agreed with staff. Otherwise he’s bent over head on chest sagging forward in the upright chair asleep

    Yep you got it ...... she was told he didn’t want to lie down when asked!
    The same man who when asked do you want a drink/ food/ etc says no & then will eat or drink when offered the food etc!!!!

    So my daughter sat with her Grandad & tried to make him comfortable in the upright chair! Not possible & she kept lifting his head & trying to get him in a position that was not going to cause pain in his back & shoulder.

    Then at tea time they produced the giant tablets & asked my daughter if she would mind giving them to her Grandad / my Dad to encourage him to chew them up to make them easier to swallow...... he’s now on patches to stop him having to take the large codeine one & still no crushing of the other meds meds happening! Yet they do it for others which are more able than Dad!


    Then tea is brought out.......
    Sandwiches, crisps, half a burger- no of course Dad doesn’t want that he can’t swallow properly!!
    So soup was an alternative & with my daughter holding the bowl up to him she helped him & encouraged him to hold the spoon & repeatedly prompted him. She did this again with some rice pudding. Imagine her surprise when a carer took a picture of my dad holding a spoon!

    She asked why & was told so they could show me he was eating a little
    Why didn’t they then text this photo to me to help alleviate my concerns ... after all they sent photos of his outings he’s been on in the past.
    I am now suspicious of the intent behind this. Surely if you wanted to take photos to reassure you’d say to my daughter let’s take a photo of you & Grandad while he’s having his tea so Mum can see he’s a bit better?

    I am often in the home & I have seen them take pictures of activities etc but never people eating a meal! I often help Dad at mealtimes & no one has ever photographed him before.

    I now distrust the homes motives, after yesterday’s debacle I feel that certain carers are closing ranks as of course they will do.

    Hopefully enough evidence to get Dad the help he requires but feel as if I shouldn’t all the time have to provide evidence to support my requests

    I’m in bits!

    So husband is off to see if Aged Mother ( in respite care) wants to visit Dad
    ( in his care home )

    I can’t face seeing him bent double in pain, & not say anything to staff. My husband is joint LPA & needs to step in as obviously they are not going to take any notice of me!

    If the doctors advice isn’t followed, my request for Dads hospital bed to be reinstated is met with not really possible as his room with the ( non flushing toilet ) is apparently to small & furniture would need to be moved! I really don’t know how many times I can ask for Dad not to be left bent double in his chair as it causes him extra pain In his spine & shoulder.
    They always have an excuse he said no, but he never says no when I’m there.
    He loves listening to classical music & even when speech is beyond him he taps his feet at times between drifting between his different levels of consciousness.

    Please folks .... tell me am I being unreasonable in my requests. Yes dementia fluctuates in all people it’s part of the disease but am I not seeing a bigger picture here.

    Yes there is 24 hour care

    But each time he’s fallen no one has called me to tell me.
    I arrive in to visit to find him bandaged & bruised.

    I have made allowances but repeatedly they call the doctor & don’t inform me. Despite my requests & polite insistence that they let me know what’s happening.
    My Dad has assaulted two members of staff & yet no management have spoken to me only one of the assaulted members of staff!

    That’s not right is it ... or is it??

    Recently the home have had a large changeover of staff with one of them giving me her phone number. I don’t want to drag anymore people into this, & up until a couple of months ago I would have said this home deserved its exemplary CQC rating.

    No I’m not going down that path again, Mums GP was enough! I can’t fight the systems anymore. It’s just I can see a care homes a business & it’s easy to tell who is self funding & who is council funded.

    Dads diabetic & yet he pays for the podiatrist to do his feet. No O/T assessment, the optician called in the summer & another self funding client got Dads appointment. & I was told that he would be put on the list. Every time I ask about test results etc I’m told they are fine

    Obviously they are not!!!

    Oh by going through this methodically in my head and posting on this forum I can see I’ve let things slide! It’s my fault I should have been more forceful, I’ve let my Dad down
  2. TNJJ

    TNJJ Registered User

    May 7, 2019
    When your daughter and husband are there again get them to take photos of your dad(especially when trying to eat).Keep it on your phone and back up on computer to keep as evidence.
    Believe me they are taking photos to prove that he can feed himself,so therefore they can show that they are following care plan.

    They will close ranks.
    There is a special chair that can be got for people with spinal problems,but to be honest a few hours bed rest in the afternoon would help him.

    My dad is also diabetic and has to pay to have his feet done.I know it is supposed to be part of the NHS for people but there is hardly any NHS podiatrists about.

    Also if your dad has real problems swallowing he should be on a puréed diet rather than soft.It depends on the extent of his swallowing.
    Has he had the SALT team in to assess him?
    They should have notified you if he had a fall.You have a right to be told and they are supposed to inform you.
    If a home has a lot of people leave there will be good reasons for it.Not a good sign.
    When was your dad last weighed??
    People in homes are supposed to be weighed monthly.
    You are not being awkward.They are!!
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Don’t know every time I ask no one is available. No SALT team or O/T reports or diabetic nurse check ups I’m palmed off with oh he’s okay.
    They don’t follow any directives at the moment, it’s my fault I should have spoke up earlier!

    I’m not going to belittle my Dad by taking photos of him unable to eat, he would be mortified & is aware of more than they realise. He has difficulties expressing himself but infront of some staff he can be seen to understand certain things - like sitting in the chair is painful & bedrest is beneficial.

    Senior staff should know better.
    I wish I could just take him out but need to get assessments done etc. Meanwhile he’s been compromised I feel, but is that just me??
    Am I reading things into a situation.

    So I am staying away for a couple of days. My husband is taking my Aged mother to see Dad.

    My mother in law has rung up & im going out with her tomorrow for a couple of hours, a picnic & to view a vintage caravan she is interested in.

    The overwhelming guilt is balanced by the relief that I don’t have to face open hostility again today.

    I hate confrontation I have tried so hard to avoid it ....
  4. TNJJ

    TNJJ Registered User

    May 7, 2019
    I can understand you don’t want to take photos .
    I did with dad simply because he had cancer and I wanted to make sure on the progress.

    I’m not good on confrontation but as I have been both sides of the coin (so to speak) I have learnt to deal with it.
    It should be fun looking at the vintage caravan.Ive seen a couple and they were small.

    Have a good few days off.I hope your leg is getting better.:)
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I have cleaned the house & cooked fish pie!
    Now I’m fretting oH been gone for hours!!!

    Have realised I am not at fault, lots of tears this afternoon.
    I have seen other residents & I was concerned but I don’t know the facts, one lady keeps telling me things but she has dementia. I don’t know now!
  6. witts1973

    witts1973 Registered User

    Jun 20, 2018
    Leamington Spa
    Hi @DesperateofDevon I'm feel for you tonight,having read this thread,it's upsetting and frustrating trying to get the best the best for a loved one isn't it,I try to get the carers to leave my mum in a good comfortable postition and some of them just dont get it,I'm lost for words at times,it's so hard seeing a parent that was so strong and protective now in a vulnerable position,I hope your dad gets a bed sorted again so he has some comfort when he's out of his recliner.
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    A recliner would be nice but apparently there isn’t room for one in his room, so he’s always in the lounge area in a horrid upright chair.
    I have had to take a step back this weekend for my own sanity. My husband has been taking in my Mum from her respite care home to visit Dad in his care home!
    Today the fun starts... my car has failed it’s mot!
    Really...... of all the weeks!
    So I await a new drive shaft ( I shudder to think how I can pay for all this!) but the other alternative is trying to get Mum up into a VW transporter works van!!

    Umm I’ve tried, along with several rugby players ........ it’s a long story let’s just say it didn’t end well shall we.........
  8. 70smand

    70smand Registered User

    Dec 4, 2011
    Oh my, I’ve just caught up with your thread and I really do feel for you.
    Please don’t doubt you are not doing the best for your parents.
    I’m not sure if I read you have power of attorney over health and welfare or not.
    My dad has been in his care home for 2 and a half years and it’s been a real rollercoaster with different issues and changes of staff. my mum visits daily for hours every afternoon, which is her choice as she doesn’t know what else to do but be with dad and even then she felt she didn’t always know what was happening in the morning. I used to visit in mornings to reassure her. But it’s so much more difficult for you to ‘keep an eye’ on things with everything else you are juggling.
    You should be able to see your dad’s care plan though and take photos of documentation if necessary, and also you can contact cqc and don’t have to let the home know.
    Once my dad broke his hip ( bit of a mystery as he couldn’t move himself without being hoisted and hadn’t fallen !) he ended up nursed in bed as he was no way comfortable in an upright chair and we did buy him a recliner chair for his comfort, but at a hefty cost. Now the home leave dad in bed in the morning and hoist him into his chair in the afternoon so my mum can wheel him into the lounge for activities, or even the garden on good days, or just sit in his room with him.
    We did have to fight for what’s best for my dad at times but if they are caring for your dad as an individual then they need to do what’s best for him.
    My dad never got CHC funding but he did get FNC, and this was after 2 episodes in psychiatric hospital for ‘challenging’ behaviour.
    My mum feels the home look after my dad well and has built up a rapport with a lot of the carers but has said she wonders if they would look after him so well if she wasn’t there every day - which makes me sad.
    To fit a recliner in dad’s room the bed is against the wall and pulled out when needed, but maybe they could consider a bigger room if there are any?
    As hard as this is you really are doing amazing xx
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Thank you
    Really need some perspective on it all at the moment. I have emailed Dads social worker ( in another county!) to update her on my concerns. My daughter is amazing & a great support which helps, but I feel she’s putting her life on hold at times to help me.

    Going to go for a walk with Tall thin dog & daughter, aged mother wasn’t up to visiting Dad today so have work to catch up with as well now & am a taxi service for daughter as car has failed it’s mot!
    We aren’t on great bus routes to get to Mum & Dads so it’s all fun & games - ah boring looks like nirvana to me at this moment in time!

    There are empty rooms larger than Dads but I think these are for those not on the council rates! How silly am I to only just realise that self finders have much nicer rooms!!!!
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    So I don’t know how I feel about any of it but Safeguarding issues have been raised about Dads care etc.
    Really numb with all the stress , Brucie Bonus is that Aged mother hates the respite care home 5 star or not! So maybe we won’t have the emotional games of. “ put me in a home “
    Plus think Mum might be more amenable to help ....., well a girl can hope!!!
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Hoping to get him a recliner as the home say there isn’t room for one in his room!
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    So Safeguarding in full swing I think! ?!
    Had first ever phone call from home asking about Dads care - flu jab !
    I’m not sure about giving him this as in his TEP plan he didn’t want medical intervention at end of life stage.

    So need to have best interests discussions
    & way up pros & cons.
    I can’t have flu jab as I have low immune system & it makes me ill for months.
    I don’t want this to happen to Dad ???

    Advice any one or experience???
  13. witts1973

    witts1973 Registered User

    Jun 20, 2018
    Leamington Spa
    That's an awkward one isn't it,how does this work then do they have a nurse at the home that will give the jab then and they need your permission?
    I would let him have the jab,you never know you could end up having it thrown back at you if you don't
  14. TNJJ

    TNJJ Registered User

    May 7, 2019
    Hi.It depends whether you’re dad has one every year.My dad does and is having it .I would just follow what he would do normally.Thats all I can say really.
    Hope your leg is feeling better alongside you.:)
  15. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    I've not fully followed this thread, and sorry it all seems so difficult. Life is so unfair. I keep meaning to comment and don't know what to say/add.

    I've not yet got experience of care homes.

    Re the flu jab, I have arranged for my mum to have one to date, but last winter also thought about what I'd do if she was immobile and quality of life was poor, and intend at that stage to request she doesn't have one.
  16. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Just my opinion. My dad also made it clear he wanted to be allowed to leave this world when the time came without any life prolonging treatment so I refused the flu jab for dad last year when he was obviously fading fast. His quality of life was not what he'd have wanted and I didn't see the point in upsetting him with it.
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Hi folks thanks to you all for your replies.
    I researched it all, & can say I know more about the flu jab now & the immune system in the elderly !!!!!!!

    So apparently according to medical & scientific evidence & research -
    Immune system dramatically deteriorates over the age of 50 & onwards!
    ( not helpful for those in mid life crisis but hey!)
    Evidence shows only 50to 60 percent of vaccine cover flu variants, but no detrimental effects with vaccine in dementia patients.
    Highly recommend by Alzheimer’s society to have flu jab.

    So Dads having the jab!

    Update on safeguarding-
    A community nurse has informed the home of the safeguarding issues that have been raised! ( Is this lack of professionalism ?)
    All of a sudden Dads getting more rest periods!
    Downside no hospital bed still & now redness developing on his back!

    Swings & Roundabouts folks!
  18. TNJJ

    TNJJ Registered User

    May 7, 2019
    Hi.Does he have a repose mattress and cushion??Stops pressure sores
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    No -because the community nurse hadn’t even read his notes prior to 2016!
    Apparently she said that the older notes were paper copies....... really how stupid do these people think I am!!!!!

    Husband says I’m becoming obsessed- because he really doesn’t understand- that I get ( to a certain extent!!!) But professional people should really know better!
    The lovely staff ( yes there are some) are trying to prop him on his side with pillows but that is uncomfortable for him & he removes them.
    Meanwhile he is fading away. The patches aren’t strong enough & I feel no one takes me seriously........

    My daughter is a huge support but that’s not fair on her - she’s meant to be sorting out her masters & getting experience in hospitals etc; but because she’s helping me out she isn’t- so the dementia impact grows.

    Meanwhile - I feel awful the constant tinnitus , heart palpitations, stress etc mean , I’m unable to get my blood pressure down!!! This situation really is slowly killing me I feel. I’ve now started to get pains in my chest & arm - off to see the doctor today!!

    Add to that the insomnia through worrying about Dad........
  20. witts1973

    witts1973 Registered User

    Jun 20, 2018
    Leamington Spa
    #60 witts1973, Oct 7, 2019
    Last edited: Oct 7, 2019
    How odd about the notes,it's the here and now that matters,if he's in a bed a lot or most of the time surely he should have the correct mattress,if he was in that situation at home he would have been given one,I can't see why they haven't done that.

    My mum used to get itchy were the patches were if they were at the top of the back and she could scratch them off then,some had been known to falll off,to be honest we don't even know if they are doing anything now,I don't think they are but the advice is to keep wearing them.
    I feel for you in your situation as you can see the gaps in the way things are done but have little or no control over matters,we're just concerned family aren't we,they must be used to that.
    I hope the doctor can do something for you today to help you

    All of this can drive you a bit mad can't it,I had visions of mum just going in to old age slowing down a bit walking with a stick perhaps and at a good old age just leaving us in her sleep one night from old age/natural causes,then dementia came along and changed everything

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