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Coping with elderly parents – particularly Alzheimer’s Rant

Discussion in 'Personal' started by lindenlea, Feb 2, 2012.

  1. lindenlea

    lindenlea Star commenter

    Bought a large Twix on the drive home then made a big pile of beans on toast - pure comfort food - and now feel a bit sick.
    Also had a comforting bath, The old comforts are the best.
     
  2. jonowen

    jonowen Occasional commenter

    Hi Linden, ((((((((((sympathy+hugs)))))))))))) I read this board frequently but don't post much as I get too upset. I know exactly how you feel - we worry because we are 300 miles from our parents (my in-laws) and don't really know what is going on with carers, doctors etc apart from daily phone calls. When we visit it is an intensive 2 or 3 days, we feel reieved to be home then the guilt sets in and it's a viscious circle again.
    Last visit Mum said to me "You think you are never going to get old", she was so like her usual self' giving me motherly advice - I can't put my finger on when she became the different person this blasted disease has turned her into, I feel so sad.
    Thinking a lot today and realised that life comes in emotional stages
    • you love toy shop windows, your bike and playing outside
    • you discover books and learning new things is fun
    • you fall in love and all that goes with it
    • you become an adult and your parents become your good friends
    • life flies past and you feel cheated that your parents are now like children
    Sorry, that is a huge generalisation but life is a *** sometimes.
    Joni x
     
  3. lindenlea

    lindenlea Star commenter

    Where's the emoticon for "blows nose surreptitiously" when you need it.
    Thanks Joni
     
  4. Lara mfl 05

    Lara mfl 05 Star commenter

    May2, sorry the care home is proving less succesful than you'd hoped. I always think a lot depends on the staff and there's huge turn-overs in these places.
    Don't worry about the length of the post- just look at mine recently!
    I appreciate what you say about falls. Ludicrous to expect you dad to walk across the room in the dark to press the buzzer! Even worse to move all the furniture round- they need familiarity and things to be as normal as possible.
    No, definitely can't see it ferm the Care homes point of view. I appreciate if they've quite a few patients all ringing at once, others walking/pacing around it's difficult to be everywhere at once and deal withall of it. But that's why we pay such huge amounts of money - so they find ways to deal with it!
    Actually I've just come home, having Mum completely unresponsive today and wonder if they'e 'medicated' her to 'keep her quiet'. According to the nurse (couldn't find me a Dr to talk to about what's happening she was responsive! (Well if they call that responsive- she didn't even acknowledge I was there, had to keep saying 'I'm over here Mum!" and she just kept repeating the same phrase over and over regardless of what we were talking about)
    Also been phoned by the discharge dept. saying Mum's been 'flagged up' as possibly ready for discharge as she's medically and physically fit and had I considerd where she could be discharged to! She apparently hasn't yet seen the cardiologist yet (perhaps Mon?) and the physio hadn't found time to assess her today! We don't even know if she can stand and definitely much worse mentally than before her falls.
    So one for you [​IMG]
     
  5. PlymouthMaid

    PlymouthMaid Occasional commenter

    The hospital moved my Dad to another ward in the middle of the night last night. I went in today about lunchtime and he hadnt had any of his parkinsons' meds which should have been taken at 10pm, 8 am and 12 today. The nurses couldn't find his drugs or his repeat prescription which was in the box. When they finally turned up left in the old ward with his chart, they were all muddled up and the prescription was gone. Pretty disgusted with this - why does it not occur to a nurse that a chap with parkinsons must have some pills to take? Grrrr. pretty worrying really. The sooner he gets out the better as he has much better care at home from my Mum. They have also dosed him up on diazapam despite his doctor telling us that he shouldnt have them as he just sleeps all the time on them. Pretty incompetent really, surely it is a simple procedure to make sure that when a patient moves, they have all their things and the nurses know what is wrong with them.
     
  6. Lara mfl 05

    Lara mfl 05 Star commenter

    PlymouthMaid, I've just got back from the hospital feeling the same feelings."no-one was able to tell me how she
    was faring, who she'd seen and what the outlook was"

    So cross and disappointed with the whole scenario. Like you I can't get anyone to tell me<u> any</u> information- now put Mum on oxygen! Is that indicative of her situation medically deteriorating? Mentally she's <u>so</u> much worse! Last Wednesday she was completely continent, but we found her sitting in a soaked nightie holding the control in her hand. This for a woman who hasn't been able to use or understand a button/control for over 2 years!They're good at taking BP, tests etc, but to me totally at the expense of any personality or dignity. Mum so bad now probably woulddn't even 'call out any more and seemingly ignored. Needs prompting to drink-as far as they're concerned there's a carafe and a glass on her trolley. Have had to come home to calm down before I get really cross with someone whose fault it really isn't.
    Like you I just want to bring her home to her peaceful, quiet place with her things around her. Haven't taken in any photos etc as they're still waiting for her to assigned a ward and don't want them to lose them (like those tablets of PlymoutMaid's Dad.)
    God bless that lady in the
    next bed, the only 'angel' in the hospital, ensuring Mum retained her
    dignity.
    My thought are with all those struggling particularly with a parent in hospital at present. Bless you all!
     
  7. Sorrim

    Sorrim Occasional commenter

    Here's a big cyber hug for you Lara mfl 05. I am so very sorry that you are having such a sad time. I re ad your post in tears for the lovely lady who is your mum and the situation you and she are now in. Bless you for not getting angry... I understand what you mean, you'd end up getting cross with someone whose fault it isn't , but you must feel like screaming. Best thing is to come on here and get it off your chest.
    Thinking of you.
    Sorrim x
     
  8. Lara mfl 05

    Lara mfl 05 Star commenter

    Thanks for that Sorrim and anybody else reading. I woke at 2 this morning and didn't sleep after that so know that I'm reacting emotionally. Will have an early night and then just de-camp at the hospital tomorrow until I get some answers.
    Sorrim, thanks for the hug too. Much appreciated.
     
  9. jonowen

    jonowen Occasional commenter

    Lara, thinking of you and hope today will be better [​IMG]
    The meeting with Dad, sons and doctor yesterday went ok (social work manager did not turn up and no reason as to why not) and the plan is to get Mum home tomorrow and see how she does. They have looked at local care homes (in case she needs that care) but Dad still feels he is putting Mum away - J and brother tried to reassure him, he deserves some peace at 85 and we can understand how he's feeling. My emotions are all over the place but this isn't about me I know, don't know what to say.
    Mum is very very confused now, all I can do is pray.
     
  10. Lara mfl 05

    Lara mfl 05 Star commenter

    jonowen, was thinking of you yesterday and wondered what the outcome of themeeting would be.Personally I think it's good that your Mum can come home, even if 'down the line', she has to be moved.
    "My emotions are all over the place but this isn't about me I know, don't know what to say." <u>So </u>describes myself at the moment. Like you I just want to bring Mum home to the familiarity of her own home. Then I feel, when we see how she is in that environnment, we'll be better placed to make a call on 'What next?' Being an 'only' Mum is totally relying on me to make the best decisions for her. I'm so grateful for my wonderful husband and my elder son this past week -younger one isworking out of the country or he'd have been here, so at least I can share the load a bit.
    Will be praying for you and your family jonowen, and PlymouthMaid's and all others 'coping'.

     
  11. PlymouthMaid

    PlymouthMaid Occasional commenter

    Hello again worried people. Hope you are all coping. We are still suffering from hospital incompetence.Mum phoned this morning to be told that he is with the pacemaker nurse at which Mum said he didnt have a pacemaker. 'OH, well what is that thing in his chest then' came the reply. That would be the Deep Brain stimulation device for his Parkinsons that they obviously know nothing about despite Mum explaining loads of times. So today they have pointlessly made him have an ECG which does not work because of the DBS device. It seems to be a case of pass the brain cell in our hospital and nobody had yet managed to speak to a doctor.
     
  12. Lara mfl 05

    Lara mfl 05 Star commenter

    Oh PlymouthMaid! [​IMG] It seems to me in the 'patients' interest to always be involved in the decision-making process', we are failing our loved ones, who are suffering mental problems and ignoring the inherent 'knowledge' of the care-givers!
    Indeed!

     
  13. Plymouth Maid - Is there any benefit next time you go into the hospital you ask for a copy of their complaints procedure? Even just asking the question may make them buck their ideas up. Make sure you ask on the ward so that they know you're doing it.
    I do feel for you. There's nothing worse than people not listening and taking note of what is being said.
     
  14. Lara mfl 05

    Lara mfl 05 Star commenter

    Quick update.
    Still no information from the hospital staff
    re Mum's condition /status, but this evening Mum bright and bush-tailed, speaking quite clearly, starting to boss the nurses and be a nuisance, so hopefully they'll be keen to discharge her and free up a bed before the weekend. We even took her for a walk and 'poopped in to the toilet with her to show the staff she is capable, IF shown /reminded where it is!
     
  15. Sorrim

    Sorrim Occasional commenter

    Good to hear... Hope you get your mum home for the weekend-it sounds hopeful. All the best. Sorrim x
     
  16. Lara mfl 05

    Lara mfl 05 Star commenter

    Good news for you Mum-in-law jonowen.
    Well finally got to speak to someone today. They're probably going to declare her 'medically fit' tomorrow -jJust a 'blip' in her heart rate caused by a skin infection. As they then need to do a home assessment and it's her birthday on Sunday, even if they haven't finished some aids to prevent future falls, we would be allowed to take her out of the hospital for a 'coffee and cake celebration' and then take her back!

     
  17. PlymouthMaid

    PlymouthMaid Occasional commenter

    That is lovely news Lara really pleased to hear it. You have all been a wonderful help and sounding board for me this past week. I have just been to see my dad and he looks a lot brighter and is more with it. They say he can come home tomorrow so that is a big relief. I am still very disappointed by the standard of care given to our old people and feel so very sorry for those who have no family to fight their corner.
     
  18. Lara mfl 05

    Lara mfl 05 Star commenter

    That's good news PlymouthMaid.I'm also less than happy about our standard of care in the NHS-it's not always the nurses' fault either but the system.
    I would like to endorse PlymouthMaids
    but for me the past fortnigh. It has really been a tremendous relief to be able to come here and offload, so
    [​IMG]
    to all who've listened to my ranting and moaning.

     
  19. May2

    May2 Established commenter

    Hi Lara mfl just noticed you said it was your Mum's birthday on Sunday so just had to say it is my Dad's too. He will be 89, how old is your Mum.
    It sounds like she will be out in time to enjoy her birthday, so I hope all continues well for you
    Thanks for support from people on here. We still haven't quite decided what to do about my Dad's room but at the moment he says he likes it now, so you can't win really. I only managed to tell my brother about it yesterday so I am waiting to see what he thinks we should do, but it does get awkward as the home are putting on a party for him on Sunday and in a lot of ways I know they are good.
    Best wishes to everyone on here.
     
  20. jonowen

    jonowen Occasional commenter

    Happy birthday to Lara's Mum and May's Dad on Sunday!
    [​IMG]
    Our Mum is girning like mad about care being forced on her - she's forgotten that the main condition of her being allowed home was to have the extra care to help Dad with her. I'm mad that they didn't put this extra care in place BEFORE she got home. There's a social work manager visiting them today (no-one knows what time) to arrange this but I haven't a clue how they will get on.
    Happy weekend to all LCCs !
    Joni xx
     

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