1. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    Hi

    Sorry but this is a long post but just feel I need to get it off my chest. Thanks to anyone who has the time/patience to read on.

    I recently contributed to a post about respite arrangements, detailing my wife's planned 2 week stay at our local LA/NHS integrated care centre. She had stayed there last year for a week and this year, I was holidaying with our family in Turkey, so I took her in the day before our departure.

    I rang from abroad after 2 days and the respite team leader said that a large blister had come up on my wife's heal. They couldn't determine what had caused this but had got a district nurse from their local GP practice to come in and she had applied a dressing.

    My wife's sister visited a few times and they were happy with the progress but noted that they were pushing her around in a wheelcare and she was spending more time on the bed, rather than in the lounge area. The staff said that the DN had recommended keeping her off her feet to help the blister heal.

    When I rang in on Sunday, they said the blister had burst but the DN was still treating and when her sister visited on Monday, she said my wife seemed more tired. She got a phone call later that day to say they'd taken her to A&E as they were concerned. After a very long wait, she was admitted to CDU and diagnosed with a bad UTI.

    Her sister took the decision not to try contacting us abroad, as we were due to fly home on Tuesday (which in a way, I am grateful, as I couldn't have got back any quicker anyway). With delays, I got home at 3am yesterday (Wed) so she rang me around 8am.

    When I arrived at the CDU, my wife looked absolutely dreadful and I just burst into tears. I had taken her into respite, with her walking in, with a little help from me (she tended to shuffle a bit but could walk more or less unaided) but hear she was 11 days later, unable to sit herself up, just laying there:(.

    The ward staff said that the UTI seems to be responding to IV antibiotics (now on oral) and elevated blood sugar levels now reducing. However, they said that the doctor had said she was okay to be discharged back to the respite unit!! I argued that she was only booked in there until Friday so how would I cope after that (they were having to hoist her out of bed)? All I got was the usual " medically, she is okay to be discharged"!:mad:

    They got an OT to come and do an assessment (with me present) and she was lovely. After trying to sit her up and stand up, it was obvious my wife could not weight bear and the OT said there is no way she could come home. She said she'd liaise with the SW based in the hospital, who would contact me - still waiting!

    My daughter-in-law visited after work and they'd moved my wife to a ward near to the CDU. She manages 2 facilities providing residential special care needs care for young handicapped adults and is CQC registered. So she knows the ropes and was able to ask all the right questions, which she thinks the staff picked up on they were very attentive with my wife. (someone sat with her and fed her - as apposed to CDU, who just plonked a plate of cottage pie and veg down, and left me to it!)

    They are apparently going to sort out an assessment bed in the area (not sure what the options are yet) until I get over there this morning and speak to the SW etc.

    I just feel so upset and guilty how things have gone downhill so quickly, just so I could get some respite and go away:(. I am hoping that once the UTI has cleared, she may regain some of her mobility but it doesn't look promising.

    Thanks again, if you made it though this long post.

    Phil
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,204
    Merseyside
    Oh Phil, I’m so sorry to read this. What a shock for you but please don’t feel guilty as this would possibly have happened away.
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,848
    Female
    Scotland
    If it hadn’t happened now it would happen at some time so there is no fault on your part. My husband was absolutely fine after a week in respite in July but is in a bit of a downturn now. Delayed reaction? Who knows. We can only do our best day by day as nothing is predictable.
     
  4. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    252
    Female
    Mid Lincs
    I'm sorry to read this Phil. You can not beat yourself up. You can only do what you feel is best at the time. If you needed respite, you needed respite.
    Don't lose hope, the effect of antibiotics can be as bad as the infection. You need to wait until they have cleared her system, which can take a while.
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,575
    Female
    Dundee
    I’m so sorry to hear this Phil. I can understand how you feel but as others have said you must not blame yourself. I hope you can get suitable arrangements made as soon as possible.
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    @Philbo Please don't blame yourself in any way - as others have said, what was going to happen was going to happen whether you were in the country or not.

    It is not your fault and if it is any comfort at all, I left my much loved foster son ( who had cerebral palsy) in the family home with all the right equipment etc, in the care of a very trusted and respected, experienced carer. I and the rest of the family went for a much needed holiday to Italy. I had been phoning home - but at one point I felt very much I needed to phone.

    The carer told me the ambulance was outside to rush James to hospital he had a fractured skull which he got in an accident a couple of weeks earlier when on holiday with his school - school had not taken the right action and the fracture went undiagnosed till a haematoma developed.

    None of this was my fault as I was not there.

    Do not blame yourself - and I hope all improves over the next days and weeks...
     
  7. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    Hi everyone

    Many thanks for your kind replies. They have done CT scans of her head and kidneys/liver and said there's nothing new going on, so most likely a mixture of the effects of the UTI and progression of the dementia.

    Looks likely that she will be going back to the respite unit very soon to be assessed to see if she regains any mobility with some physio etc, check that the UTI clears up and see what sort of care plan is needed.

    I realise that we were headed this way already, just a dammed shock. I dropped her off sort of okay and the next time I saw her she was bed-bound in hospital.

    I've just got to suck it up and move on to the next stage.

    Oh - the SW only works one day a week! The discharge team have got another SW involved - who has still to make contact!! So I said to pass on the message that by the time they've taken payment for the recent respite, we will be just below the upper threshold so will need an urgent financial assessment. That should get their attention?;)

    Thanks again.
    Phil
     
  8. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,969
    Suffolk
    You bet that will get their attention!

    (((((Hugs)))))Phil. Something similar, but not so serious, happened to OH the last time he went into respite.
    But it’s not your fault, so stop thinking it is!
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    Its not your fault - UTIs can happen however careful you are. OH has had a couple of UTIs at home - they do horrible things to people with dementia and the effects can last a while.
    He may well improve, though possibly not exactly up to the level that he was before.
     
  10. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    You really couldn't make it up?:mad:

    Arrived at the hospital today and asked what was latest position. They said my wife was medically okay to be discharged (even though she is now virtually immobile at the moment) but the respite unit have got to come and do another assessment to see if they will still take her.

    So I rang them and the managers were in a meeting but whoever I spoke to thought they were just waiting for the hospital to confirm she's coming!

    Went back in to sit with my wife but after 30 mins or so, they announced that the bay was being restricted due to possible Norovirus!! As I have Addison's Disease, If I got NV, I could go into adrenal crisis, which could ultimately be life threatening, so I beat a hasty retreat:eek:.
     
  11. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    466
    Female
    High Peak
    Oh for heaven's sake! So sorry to hear you are stuck in the middle of this (unfunny) comedy of errors. Please put your health first.
     
  12. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    Well after a week in hospital, where the care ranged from excellent to flipping useless, my wife is finally going back to the respite unit she was in (originally just for my 2 weeks holiday).

    The LA have agreed an assessment bed, where I am hoping they will try their best to get at least some of her mobility back. In the hospital, they have only gotten her out of bed twice since she's been in there!!! This was after I complained, having been given all sorts of excuses as to why this had not been done before.

    In all that time, I've only been able to talk once (by phone) to the hospital-based SW, but the respite unit manager told me (yesterday) that the LA are funding her assessment stay, so at least that is one less thing to worry about - for now, anyway.
     
  13. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    It sounds like the assessment is being funded under the reablement scheme. Mum had this after she was disharged from hospital after a TIA. She spent 6 weeks in a care home for rehab/assessment and at the end of it there was a Best Interests meeting to decide whether it would be best for her to return home with a suitable care package, or whether it would be better to move into a care home.
     
  14. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    The saga goes on.....

    My wife was transferred back from hospital on Tuesday to the respite centre to continue with her assessment stay. Next day, she seemed a bit off - not her normal smiley, giggly self. I put this down to tiredness due to all the upheaval but around 9:30 that evening, I got a call to say they had called an ambulance as my wife was experiencing some sort of mild seizure, so they wondered if the UTI had not cleared fully and decided to take her back to A&E!

    My son and I headed there (it was full and chaotic, especially for a Tuesday night) and they were just trying to take bloods etc. We saw a triage doctor fairly quickly and he said he was surprised that her mobility had deteriorated so quickly during the previous admission. He said that he would get the medical consultant to get involved.

    We then spent the next 5 odd hours waiting for them to do anything else!! Repeatedly asking when something would happen drew blank looks and much shrugging of shoulders. Eventually, managed to speak to another doctor who said there was no infection and she was admitted to a medical ward. I got home at 04:30:eek:

    Next morning on the ward and I was amazed to see her almost her "normal! self, smiling and quite alert. Straightaway they were trying to arrange transfer back to the respite home - a doctor said they had done urine tests and chest X-ray and all okay - reckoned she was dehydrated and on IV fluids (though I know the respite centre had been monitoring intake of fluids etc).

    So this morning, she is due to go back to the care centre and I just prey that we don't go into groundhog day as I don't think I could go through all that again? I am absolutely shot away!:(
     
  15. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,204
    Merseyside
    Fingers crossed it all goes smoothly @Philbo.
     
  16. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    Well, we've had a relatively uneventful few days, with my wife alternating between being fairly perky, to being very tired all the time with more "vacant" episodes.

    This morning, I got a call from the care centre to let me know that she had apparently managed to roll out of her bed early in the night. She appeared to have a bumped her head so they called for an ambulance.

    The paramedics checked her over and could only find a small red mark above one eye. They managed to get her to stand up and take a few steps (something the care centre had not managed before - I had got her to stand but they're not allowed to "lift" her under her arm, so have been using a hoist!).

    They felt that she did not need to go to A&E (thank God) and the care staff placed a mattress on the floor next to her bed. They said that unusually, she had been restless, which I agree was strange, as for the last few years, she has never even attempted to get up in the night and has to be prompted/assisted to do so. They are going to change the bed for one that can be lowered, so fingers crossed it was a one-off.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,542
    Kent
    It`s good to hear no harm was done @Philbo.

    Life would be so much easier if these developments weren`t random. It`s the fact there's no way we can be prepared which makes it so worrying.

    My mother also slept with a mattress on the floor by her bed. I don`t think profile beds were available either in her time or in her home.

    I can`t believe how little I knew when I was my mother`s carer.
     
  18. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    We seem to be alternating between a good day, where my wife is fairly perky and alert (at least until she's had lunch, after which she goes into sleepy mode) to bad days (like yesterday) where she seems to need sleep virtually all day.

    I rang yesterday morning, to be told that she seemed reluctant to get out of bed, so they had left her there! Given that she has no self motivation and cannot communicate, I politely suggested that they get her up regardless (unless of course, she simply couldn't be woken), as unless prompted/assisted, she would lie there all day.

    They did get her up and later she had lunch (cooked meal that they help feed her) but by the time I arrived at 2:30pm, she was back in bed. They said that she kept falling asleep whilst eating her lunch and when left sitting in the chair, she kept bending right forward with her head on her knees (something she often did, even before the respite started). So they had put her back to bed for her own safety/comfort, which is understandable.

    During the 3 hours myself and her sister spent with her in the afternoon, she barely stirred.

    I guess it is the progression of the dementia, which has sped up considerably in these last 3 weeks or so. I am finding it very hard to cope with seeing her like this and I feel so helpless.:(
    The flip-flop of good day :) bad day :( certainly messes with your head.
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,381
    East of England
    I think it is the dementia progression, because my husband is exactly the same, bright spells which last a short time, then dozing or asleep and I find it difficult to get enough food into him and he is still at home. Also he has gone downhill a lot in a short time. He just won’t eat much at all.
     
  20. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    Sorry that you are going through this too. It's so difficult to watch their decline.

    I am dreading these next few weeks, not only for the possibility of further deterioration but also the whole process of assessments, best interest meetings etc.

    I would dearly love to have my wife back at home, but unless her mobility improves, I cannot see me being able to cope and I do not think that it would be in either of our best interests.
     

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