1. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Interestingly mum had a melt-down at the doctors too, and I dont believe they took it seriously before then either.
    Mum arrived at the doctors convinced that it was her home and demanded that they allow her to go to her bedroom........
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I actually can’t face anymore chasing of SS, GP etc. If the emails & phone calls, relapses & documented evidence from carers don’t “cut the mustard “ then nothing I do will.
    I will wait until the next crisis & regroup
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Lucky timing
    Bit jealous as have had Mums neighbours on phone to say she’s off wandering again.
    I am 125 miles away with no transport !
    Hopefully the carers will catch her but I actually think Mum is playing games with them.
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Well I just hope that Mum doesn’t cancel the carers again. As I’m out of energy & ideas for tackling this situation.
    If mum wants to continue like this I’m powerless to help.
    Can’t see this ending well
  5. Trekker

    Trekker Registered User

    Jun 18, 2019
    I think you may be right. Crazy world.
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    For my own sanity I am going to distance myself from this situation.
    Begining to loose faith in the systems in place to safeguard
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    What a waste of time & money getting LPA sorted out through mums solicitor; Mum didn’t understand what, how & why 3 years ago.
    I know that at some point this torturous process will stop.
    But I have a feeling it will be when Mums life reaches a natural conclusion.
    Safeguarding a PWD without the support of the GP is impossible. SS can only do so much, & have been brilliant doing all they can.
    I should replace my home phones as they don’t hold their battery..... but it gives me a break from the continual phone calls when they die mid call!!!!
    Have decided not to put new phones on credit card & wait until I have saved up!
    Car needs to get back on road first & that’s still in the garage
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    After mums GPs email to myself on Monday answering only one of the queries raised by Paramedics, carers, DN & Doctor on call; I have spent 48 hours thinking how to move forward & not really seeing a way so I have decided am not contacting any of those involved in mums care anymore until a proper diagnosis has been delivered.
    Stepping back leads to hospital admission & repetitive UTIs, each time losing a little more of Mum.
    Sadly the situation with mum will continue to deteriorate & at least the carers are going in 4 times a day, if it changes maybe someone will let me know

    but no matter what happens I have realised that I have been an exceptionally kind & thoughtful daughter.
    I have cleaned, cooked, washed & cared for my mums wellbeing & strived to keep her safe & warm.
    If mum chooses to turn off the central heating, not get out of bed, not wash or look after herself, neglecting her own well-being has now been assessed by mums GP as acceptable.
    I do not agree with this decision
    I have everything to safeguard my mum
    So it’s with a heavy heart that I am stepping away.
    Mum isn’t the easiest of people to deal with daily & I dread to think of her possible behaviour.
    Thank you everyone for your support & advice.
    I just hope that at some point someone somewhere someday will see sense.

    I have to start living a life outside of trying to care for Mum. The years are ticking by & now a care package of home visits is in place I need to take advantage of that.

    I honestly can’t see this situation ending well, but until something changes I can do no more.

    How sad

    Thanks everyone on the forum, you are amazing people.
  9. canary

    canary Registered User

    Feb 25, 2014
    South coast
    (((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))) @DesperateofDevon
    You have done everything that you can - I dont think it will be long before that crisis arrives.
  10. Gavinbirdy

    Gavinbirdy New member

    Aug 7, 2019
    This happened with my mother in law several years ago, they also said she gained weight...when we went to pick her up, I asked the staff to show me she could do all these things, and weigh her. Well, she couldn't and she lost 8 pounds. I made them change the paperwork! So yes, she was allowed to stay a while longer. I found out, the facility gets paid pending how good the patient does...the better, more money. ((Hugs))
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    As Mum was in hospital for almost 6 weeks my husband & I found that the on discharge the care of Mum was handed back to her GP.

    Silent screaming over the airwaves!

    So poor mum who triggered the national criteria for dementia is now back under the useless GP ( which my mother adores as this GP says what Mum wants to hear!)

    Yes the CQC have put this surgery under special measures, yes I have made a statement.

    I’m now stepping away from this situation & letting the next crisis evolve.

    At least Mums SW has put care package in place so I know someone will be going into the house regularly. I’m not callous, just exhausted after years of Mums care. I live 125 miles away & holiday traffic can mean roads are impassable at times.
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Ok so awake early & first thing on mind is Mums welfare!

    How do you switch off from being a child of PWD?

    Can’t even persuade the dogs to get up for an early morning toddle around the block.

    Thank goodness for this forum it means I can vent & share my concerns without my husband & daughter having “ that look” on their faces. The look that says why are you tearing yourself into pieces when you have done everything humanly possible to ensure the safety & wellbeing of another.

    Sadly my husband & daughter now believe that if my Mum “won’t help herself “ then she will have to live with the consequences of her actions. This is where I have a major issue....

    Consequences of action....... ..... is Mum really capable of understanding the consequences of her actions?

    For example - if you don’t drink enough fluids you are at risk of another UTI. But for Mum her logic is - the more I drink the more I pee so that must be why I can’t control my bladder.

    When mum was in hospital the daily routine meant she was got up, fed, washed & had stimulation & interaction. But at home apart from the carers - who she resents coming into her home & telling her what to do as she puts it; Mums life is isolated.

    Mum won’t make an effort to mix or attend socials, she wouldn’t take my Dad to the memory clinic or let him go anywhere with anyone.
    Mums nasty attitude means the neighbours avoid her, but let me know if they are concerned about her behaviour becoming more alarming. So I have been the contact point informing GP, SW etc & so it seems “ the whipping boy”!

    So we are back to the cycle of Mums paranoia meaning she doesn’t speak to me, & Mum lying to carers about what she’s eaten & drunk!

    Consequently I’m sat typing my concerns on this forum as an outlet for my stress, hoping that one day I won’t wake up feeling like my brain is made of cotton wool & someone’s lifted the top of my head off !
    Hey ho another day of me trying to make out this life is normal.

    Then I go to visit my Dad in his CH & hope for a glimmer of recognition

    That’s the kicker - both parents are in various stages & forms of dementia! I honestly hope that this doesn’t happen often; but I expect it’s really common.

    Dads CH is lovely, but it’s full of very confused people with varying stages of different dementia. How the staff cope I don’t know, my admiration for what they do is inexhaustible. Unlike my own energy levels. Visiting Dad is like being Alice in Wonderland at the mad hatters tea party & I try to make each visit a positive experience. But I dread it! Each time my heart feels like it’s being ripped apart, so I smile & laugh, chat to other residents & staff.

    I know that this situation won’t go on forever, but I feel so guilty for wanting it to end. I wake up with tears running down my face & dread each day now. I’m on antidepressants & have spoken to my Own GP. Counselling has an 18 month waiting list - & it’s not as if I’m suicidal just sad at this awful situation & angry with this disease that has ravaged my parents.

    Ideally mum would live closer - not happening as Mum doesn’t want to move!

    But if I’m honest could I cope with Mum now on a daily basis? The answer is no
    So I now dread the thought that she might change her mind & want to move close by or move in with us!

    Realistically that’s not possible we live in a house & can’t set up a downstairs bedroom plus I’m disabled myself so that’s a no no!

    If I’m really honest when Mums paranoia means she won’t speak or contact me over the phone, my life is easier. I just know that it’s the calm before the storm, the next crisis of healthcare; the repetitive loop that seems to be life for the foreseeable future.

    So my friends ( if you are reading this still you are now officially a forum friend! ) I am going to loose myself in my artwork for a few hours, empty my mind & fill it with texture & colour; in the hope that I can sell enough of my work to book flights to Australia & visit our son who we haven’t seen since he emigrated in 2018.

    Of course after I’ve saved up enough to get my car back on the road!

    Thank god I love my job as an artist!!!!
  13. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    There’s nothing like immersing yourself in a task/artwork to calm the fevered brow.

    You are doing your best to support your Mum though sadly you are banging your head against a brick wall as far as the GP is concerned. Now is the time to step away from the wall, although it is hard because we we still care and want the best for our loved ones and instinct tells us to keep fighting. I think you just have to let things take their course. If your Mum has gone missing then suggest the carers/neighbours call the police, you cannot do anything about it as you are too far away. Sadly that might mean she ends up back in hospital but at least she will have 24 hour care and hopefully a proper diagnosis.
  14. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    What a horrible situation for you. That GP has really let you down. If it was me (and bearing in mind I am a bolshy sort of person!) I would be writing them a letter saying very clearly that their lack of support and continued refusal to say anything is wrong with your mother have led to her being in an unsafe situation and that if anything happens to her as a result, you will hold the doctor personally responsible. Also that you expect a full apology when she is correctly diagnosed.

    I do hope you find some resolution and people come to their senses before something awful happens.
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Ah the witching hour again!

    So difficult to totally switch off, keeping myself busy during the day creating, cleaning & cooking a meal are great distractions. But be still my whirling mind at night & let me sleep!

    Doesn’t help that Mum rings just as I’m dozing off! At least hubby is around tonight to field the calls!!!! Poor old things lonely, I know; but her stubbornness to not mix with people is the issue & that’s the horrid part of her dementia - her not understanding the consequences & impact of her decisions.
    Thank god the carers are going in daily - how many times a day now I have no idea; & I am not going to ask! But at least someone is going in daily!
  16. TNJJ

    TNJJ Registered User

    May 7, 2019
    My dad is the same. He has never been a social person and has had only a few friends.Mainly people that he has done car shows with or worked with..So consequently, all i hear is"I'm bored! "! I book daycare for him once a month to have a shower and to mix with other people. That is all he will consent to,as he doesn't want to mix with "old" people.(86 years old himself)So every day is spent moaning. Or we end up going to Sainsbury's for a coffee and a meal. We cannot travel to far in a taxi as he gets car sick now...You can never win!
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Morning all.
    Knackered of Devon might be a better description!

    I have that twisty stomach feeling again. That intuition that something isn’t quite right, with Mum. The weather warnings were spot on & thunderstorms have been entertaining me during another sleepless night.

    I know I can’t change anything or do anything else to help Mum; but this process is torture. Yes I can step back from it all; but how do you switch off.

    I find myself when visiting Dad in the CH wanting to sit down & tell him my frustrations with Mum, put my head on his shoulder & cry. I DONT
    I am “little miss sunshine” when I visit but it’s all starting to get too much for me. I now dread meeting neighbours ( the dash to the bins & recycling is now done at unusual hours!!) as when they ask how are things - that kindness is enough to break the facade I daily present.

    Dementia doesn’t only affect those diagnosed with it; it has a huge effect on the PWD family that I don’t believe anyone can understand or empathise with until they experience it for themselves.
    It’s not the dementia that has the ultimate devastating effect it’s the lack of care & loopholes that are devastating. On good days people cope with the care of a PWD, it’s the ever increasing bad days that break family & friends.

    The GP, SW, OT, DN etc never get to see those bad days or experience the continual frustrations they bring.

    I take my hat off to those who live with & care for a PWD- honestly I couldn’t do it. I feel inadequate when I see what some people do for their PWD; I’m exhausted doing this long distance!!! After having Mum stay with us for protracted periods of time I know that my sanity & marriage wouldn’t survive!

    I love my parents, but watching this disease eat away at them is breaking my heart; & I just want it to end. The constant feeling of grief seems endless since 2014 for Mum & 2016 with Dad.

    Dad is losing so much weight now - yes he eats & is well looked after in his CH but he’s slowly fading away. I don’t recognise him if I can’t see his face, that breaks me.
    I can cope with the mental confusion with Dad his gentle ways & dry humour are still present. As one resident said to me ( yes it was a lady!!) he doesn’t say much but when he does it’s funny!
    With Dad it’s just the torture of watching him fade slowly away, the cruelness & indignity that this disease brings; & then the guilt as I drive away from the care home leaving others to do what I can’t.

    I used to take Dad out for little trips between mealtimes. Now I am afraid to because of his incontinence & his frailty, my Dad wouldn’t want me cleaning him up.
    He was very proper in that department shall we say.

    Now my Dad doesn’t know who I am most of the time. Thinks I’m either working at the CH or just a friendly chatty visitor.
    Those times he does recognise me he talks as if I’m a teenager again - with a social life. My daughter & husband don’t visit with me, he doesn’t know who they are - so it’s a solo journey I travel.

    My husband says I’m having a pity party - but my heart is breaking daily. I don’t know what I’d do now without this outlet for my confused emotions or how I could continue to seem normal to others in my daily life.

    I had even started up conversations with strangers in the weekly food shop queue to pay! Now there’s a red flag in extreme. I’ve now got the shop down to less than 30 minutes from arrival & parking to loading the car with shopping to stop that embarrassment. How did I ever become that person?

    The most recent guilty feeling is one of wanting this situation to end; I want the finality that death brings. A natural conclusion.

    Reading the sadness & grief that others feel on the loss of their PWD makes me loathe that part of myself that wants this to end. I know I’m not alone in this feeling; but still I’m torn apart by even feeling or thinking this.

    My grandparents both had dementia & it was a horrible protracted demise. I remember watching my parents be destroyed emotionally by the process. I did everything I could to help ease that burden for them; so subconsciously I have hopes my children will do the same.
    My son emigrated last year & I miss him so much, my daughter is looking to continue her education with a masters degree. I have given the children the tools required in life to fly the nest & live their own lives.
    I’m so proud of them, but miss them & that support & love, their laughter & joy of life.

    So another morning dreading the phone calls from Mum, the depressing daily calls of confusion & mental despair that she feels. Perhaps that’s her comfort zone.

    Just like Dads comfort zone is “ the quiet man who doesn’t say much but when he does, it’s funny “

    Thank goodness I’ve got that.
  18. kindred

    kindred Registered User

    Apr 8, 2018
    Sweetheart, I know, I really do. When I was caring for my husband at home, I would all but beg people in shops or whatever to smile at me. I was grateful for anyone who would say a few words. Of course you want this to end. You need an end to your torment too. It really is like PTSD and I am still struggling with going a certain distance from home because I may need to get back in a hurry …
    I used to dread meeting neighbours, too. Couldn't face their enquiries. Still can't even though my husband has now died. It's always the same conversation, how old was he? And I say 73 so they say, no age is it … and where do we go from there!!
    I think we do appear normal and I hold down a responsible job in mental health. I promise normality will come back, you will get yourself back. I had to be firm with myself not to take the official (SW etc) things that go wrong personally as though there is an evil force controlling the Universe against me ...
    I get the most support and love from friends who have been through this dementia ordeal or who are going through it now. So many of us.
    All love and fellow feeling.#
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Thank you, it’s really appreciated x
  20. Trekker

    Trekker Registered User

    Jun 18, 2019
    Dear DesperateofDevon, I relate to everything you say, everything. You mentioned wait of 18 months for counselling and I wanted to let you know about online NHS CBT available over most of the country, and I think also in Devon, which is available much more quickly. I was offered my first appointment for Monday, a month after self referral, and the long note I wrote during that process was very similar to your post. My OH has used this service and was very good. You and the therapist type your conversation, which you can of course take part in from home or wherever you wish. Hope it may be of help to you.

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