1. Áine

    Áine Registered User

    It's been a miserable few days with dad. I can more or less cope with him coming out with "crazy" stuff, and with him being angry and critical (though he can sound so much like my mother sometimes when he's in that mood that i cringe) but I can't cope with him being upset and helpless. Yesterday his eyes filled with tears and his voice went shakey every time anything was said that he seemed to recognise. Tonight I called at 8pm on my way home from work. The staff said he was asleep in bed but when I went to his room he'd got up and was in pj top and inco pad pulling his bed covers around. Seemed very lost and tearful. Got him into bed again cos he said he was tired. He talking about not having coped without me, and how he'd spent the whole of last week looking for me. It's true I visited less last week because I've been trying to get on with clearing his house out, but I still went 4 days out of 7. Sat on his bed and put my arm round him. He said he was happy with that, but kept lifting himself up to say things I couldn't understand. He couldn't hear anything I tried to say to comfort him because there's been a trail of mix ups that keeps delaying his audiology appointment.

    So I sat with my arm around him whilst he tried to go to sleep, horribly conscious of being the one thing that stood between him and utter despair .... and not feeling up to the task.

    The other thing that's really unsettled me ...... dad's been there just over 3 months and I've sort of got to know the other residents. In the last couple of weeks 3 of them have disappeared ....... names crossed off doors and lists in dining room. Of course I didn't know them that well, but have chatted to them and got used to them as part of the place. Have they died? I don't feel it's right to ask. None of them were residents who seemed particularly ill ( not that is compared to the apparent average in there) though the last I saw of one lady was her lying in bed .... previously she was the person who usually had the chair next to dad's in the lounge and I'd chat to her when I came in. If I didn't predict when they might be leaving us, will I be able to predict when dad goes .... or will I arrive one day and ........

    Mostly I cope with visiting and get over it, but tonight I started crying and couldn't stop ...... sometimes it's a blessing that dad's deaf cos it didn't disturb his sleep. :(
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Oh bless Anie , your got Big hugs in the tea room a thread Connie started ,oh please don’t think like that ,or try not to
    yes some of them may have passed away ,but some of them may have been in Respite like mum some may have been taken home

    I wish I could say more to make you feel better ,but am not in your situation yet
    all I can do is send you my love
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Áine,
    Big hug on its way to you.
    Might some of the "missing" have been on respite stays, or intermediary care between hospital and home? I know what you mean; I regularly talked to a lady in mum's home and she has disappeared.
    Now unless your dad has a massive stroke, or a heart attack, you are going to know - but he could have those anywhere. At least being in the Home he would not be on his own. It is likely that when the time comes, you will have plenty of time to say those things that you need to - I know what you mean though; I sometimes leave mum and think 'this could be the last time'. But that is the same with everyone that we know and love.
    Áine, you have had so much to cope withover the past months; you are doing brilliantly - you have to relieve the emotional tension some time, so maybe tonight will have done you good.
    Thinking of you.
    Love Helen
     
  4. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Aine,
    I know just how you feel because my Mum has been extremely tearful and unsettled since her move to a nursing home after a fall. She has had depression off and on for years, but the moves between care home, hospital, care home and nursing home really unsettled her. They've adjusted her medication which has helped her depression. After several months, she has finally settled down and has not been tearful at visiting time at all in the past few weeks. Dementia patients get frightened and confused easily, but the staff should know how to comfort them. They will go out of their way to find something that helps. In Mum's case it was taking one of the dogs for a visit or having her soft toy dog to hold.
    Patient turnover is quite high in care and nursing homes because each home has a particular category of need which they are allowed to cater for. If some one becomes more disabled or their dementia becomes a problem, they may need to move to a home with more nursing or mental health care. Some times people go into a home after hospital treatment or for respite care on a temporary basis. Of course, some may also die, but an empty room doesn't necessarily mean a death.
    The Matron at Mum's home advised against visiting every single day, particularly at the same times as they come to expect it.
    What happens if you are ill? Even a cold might be harmful to an elderly person. She said that it was good to have quality time, when you can talk about something interesting or amusing that you've done. Sometimes my Mum is quite happy and sometimes she is tearful, but I'm not sure whether the frequency of my visits have that much to do with it. She has vascular dementia and there are sudden downturns followed by slight improvements.
    I have found that if I'm feeling very stressed, or pushed for time, there are more likely to be problems when I visit. Mum seems to pick up my moods surprisingly quickly.
    I hope your Dad settles down soon.
    Kayla
     
  5. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    [/I] Tonight I called at 8pm on my way home from work. The staff said he was asleep in bed but when I went to his room he'd got up and was in pj top and inco pad pulling his bed covers around.[/COLOR]
    Oh Áine
    I think this is the key to why you're feeling so low tonight.....along with sorting out your dad's house.....Too much is happening too soon too quickly.Today you saw your dad in a very vulnerable state....Next visit could be so different.
    Love
    Wendy
    x
     
  6. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Aine

    Your doing your best in a very difficult situation, its almost role reversal and you feel so protective as you would to a child and it pulls on your heart strings when you have to leave him.

    I'm sure your cuddles are the best medicine in the world, all you can do is let him know you love him and that your there for him.

    Nothing wrong with a good cry, i know, i'm an expert on the subject!

    Thinking of you
    Alex
     
  7. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Everyone needs a shoulder ...

    ... and I hope this little cluster of digital ones is helping, Aine. I think Alex made a very good point - my Mum has always been so 'in control' that having to be the one that's taking care of things feels so horribly wrong to me. The days she's the most vulnerable seeming are the hardest, as I don't leave feeling comforted at having been, but with dementia they fluctuate so much, it's perennially unpredictable.

    And being tired doesn't help me either - I was utterly knackered Saturday morning. Nothing particularly had gone wrong, but I just sat in the shower and wept. But Sunday was better - distracted myself in the garden, some unexpected company and a couple of hours sunshine. Everyone - including those of us wrapped in dealing with those we see as 'in crisis' - needs some respite in our own way from time to time. A good cry is no shameful thing, and a good night's sleep cures more than it's given credit for.

    Take good care, Aine, and don't worry about letting off steam to the rest of us. We all do, and we all respond - it's what makes TP what it is.

    Dave
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Oh, Aine. It’s so unfair isn’t it? The big things and sometimes the not so big things.

    Here’s me trying to get the audiologists to stop distressing mum challenging her with equipment she doesn’t really need (in the great scheme of things) and you desperate for your dad to get help from the same source when he clearly does need help. (Another ‘post-code lottery’ in the NHS, as they say? Or, if you’re anything like me the sheer frustration of cancelled appointments? – those ‘practical’ matters which can send me ‘over the edge’ and drive me to tears and tantrums when reality is it’s not that at all but the underlying emotions just needing some trigger to bubble out…..)

    I don’t know if this is any help to you or anyone else here but I uncovered a new social services team today – the ‘Sensory Impairment Team’ – you probably know of them (I recall you’re connected with the NHS?). I’m hopeless on NHS and SSD departments - but trying to learn fast! Well, what a wonderful lot of SENSE this social worker talked…. like a breath of fresh air……I haven’t spoken to many SWs, medics etc who seem to have grasped mum’s holistic situation quite as this woman did on the basis of a referral (the referral now appearing to be the one good thing the ‘audios’ did – even though SSD have now negated the referral and recognised mum’s distress (lack of) is paramount to her welfare – NOT her apparently minimal hearing defect).

    Could they be of help to you and your dad albeit I recognise in very different –almost reverse - circumstances? (Sorry, I don’t fully understand the ‘system’).

    Hope you’re feeling better today after a good cry. And if you need another one tonight, so what? Just do what you need to do for you….you’re not harming anyone… Take care,

    Love Karen, x
     
  9. Áine

    Áine Registered User

    Hi, thanks for all these replies. This is such a good place to sound off, with people who know what I'm talking about.

    Thanks for reminding me of connie's big hug :) And the thought that perhaps some of these people have gone into different care situations. Thinking about it that might make sense for one or two of them.

    Kayla, I've been struggling with the need to visit every day for a while ..... and last week thought I'd back off a bit ..... now feeling guilty about it, though really I'm sure you're right. It's quite possible that my being there doesn't make that much difference to the big picture, but i find it so hard to stay away when i know he's distressed.

    Think you put your finger on it Mel - that awful image of him, so vulnerable, half dressed, very dishevelled, and lost and confused. Too much to take in on top of my exhaustion with sorting his house out.

    Alex and DAve - thanks. it was a bit of a relief to cry. I've felt upset but been trying to hold it together for too long. It's felt a bit better today. Dad back to being angry and paranoid rather than teaful. He's pretty obnoxious when he's like this but at least I don't find it so upsetting.

    thanks Karen, for suggesting the sensory impairment team. I'm so glad you found a SW who was helpful. thank goodness for the few people who DO seem to grasp the situation. Dad's wait for audiology has been about other factors though. Long saga that started back in February - you'll wish you didn't start me on this one :) I wanted GP to refer him to audiology but he had to have his ears syringed first. Fine. Except dad was in respite care at that point, over the other side of the city. Nurses from dad's surgery wouldn't go over to the respite place to do it, and nurses from the surgery where dad was registered as temp patient whilst he was in respite wouldn't do it because he wasn't 'their patient'. Then the first nursing home he was in temporarily said they'd do it, and then didn't, and then when he got to his permananent nursing home they would do it but the person who does it was off on annual leave for a fortnight! (bored yet?????) Then he had it done, finally appointment was made, medi car and escort booked ............... only the medi car came to my house to collect him rather than the nursing home because I'd given them my address at the time he was referred because dad was in respite and I didn't know where he was going to be. So the home re-booked it. Only to then become concerned about dad's mental state and want him to see the psychiatrist ..... and the day she can come to reassess him is .......... you guessed it .......... the day he had the next audiology apt booked ................. sooooooo :eek:
     
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Nope... just wonder if we could collaborate on the 'Carry on up the Audiology Dept' as suggested by Dick (Perhaps he could provide the foreword....?!):)

    Delighted you 'sound' so much more positive tonight (or this morning! - on my usual 'late stint'!!!!)..

    Good on 'yer!

    Love, Karen, x
     
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Lord, give us strength!

    :mad: :mad: Grrrrrrrrrrrrrrrrrrrrrr :mad: :mad: For once, words fail me.
     
  12. Áine

    Áine Registered User

    would love to :D it's my lunch hour (lunch hour????? no, not exactly ...... having coffee and sandwich and sneeky check of emails on office computer) so will get onto scripting ideas straight away ;)
     
  13. Áine

    Áine Registered User

    thanks for brightening my afternoon Karen. been working as normal, whilst secretly auditioning for our film. i think we can safely cast one of the GPs i work with as the audiology consultant ...... he's lovely but rather manic Irish chap who speaks so quickly and with such an accent that even the hearing un-impaired have a job to grasp what he was saying. plenty of scope for confusions there. he also waves his arms around like a hyperactive octopus, which I think should be good visually.

    we'll of course have to have the whole thing run by our local PCT ........ they can reorganise, swap roles and policies, reinvent job titles and shuffle phone numbers every 5 minutes or so to add to the general chaos and confusion. need to be wary that they don't steal the show though ...... they're a bit of a carry on in their own right :eek:

    tomorrow i'll be working in a couple of different surgeries so i can begin to do the casting for nurses and receptionist ;) Any other nominations welcome :p

    hugs
    Áine
     
  14. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    My mother's second social worker was deaf, and this added to the general confusion.

    Lila
     
  15. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    :mad: A representative of N.I.C.E. ???
     

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