1. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    Hi, I'm going to have to be careful or this will become an incredibly long post. :)

    I'm currently looking after my partner's parents (whom for the sake of abbreviations I will call MIL and FIL).
    MIL was diagnosed with Vascular Dementia years ago. Long before he and I met. FIL was her main carer and my partner moved them to Inverness so that they were close to him.
    Last year FIL had a spate of falling and really wasn't himself. He was eventually taken into hospital where they diagnosed him with Alzheimer's and Vascular Dementia. He also had a UTI so as you can imagine he was extremely confused. When he left hospital, I temporarily moved in with them to look after them. We needed to find a house big enough for all of us.
    We eventually found somewhere suitable with what is almost a granny flat type affair in the house.
    We all moved in (I cannot even begin to explain how stressful that particular house move was) and we soon got into our own little routine. However, from day one when we were having meetings about their care, the day centre staff have been against us looking after them. The manager actually shouted at me that I couldn't do it because I 'wasn't trained!' and that they should go into a care home even though it was against their wishes because my FIL's Alzheimer's meant that his decisions could now be ignore/overturned.
    Their staff have repeatedly put me down and made comments about the level of care I provide. Even going so far as to report me to SS for neglect! SS investigated and spoke to various home carers and nurses and the GP and are happy that everything is fine here, but I still have to put up with hostility from the day centre staff.
    FIL now doesn't sleep well at all and I'm currently trying various suggestions. The current one being paracetamol and soothing music.
    We have a full personal care package which is let down by the useless office staff who really don't take our needs into consideration at all. We are trying to go for SDS, but although we asked the SW, he never did anything about it and now he has closed the case so we are on a waiting list for a new SW.
    Thankfully FIL and MIL are away for two weeks respite from Monday as I am way past ready for a break.
    Anyway, so much for my keeping it short. :eek:
    I'm here. I'm fed up with the so called support services and I really just need to chat to folk who know what I'm talking about for a change. :)

    So, um... Hi.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,342
    Merseyside
    Welcome to TP :)

    Lots of us know what you're talking about so please keep posting.
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,901
    Female
    Scotland
    My dealings with day care staff are putting John on and off the minibus each day. Yes, they do a six monthly report when they phone me up to ask for any input I want to make. Other than that I cannot imagine what else they would feel qualified to comment on. How do they know about your level of care at home and what makes them able to judge? Can you give us a clue?

    One of the centres John goes to I take him there myself and try to sit in for half an hour or so to see how they do things. If you want to get on their good side could you suggest doing this to get an idea of how they handle things?
     
  4. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    Thank you :)
     
  5. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    #5 Biggest Fairy, Oct 24, 2015
    Last edited: Oct 24, 2015
    That sounds more like the relationship I expected to have with them.

    My in laws have been attending the day centre for about 4 or 5 years now. We never gave the place much thought until MIL started to wander out the door and get lost. The front door of their house was then kept locked and a key safe fitted so the carers and nurses could get in. At the time, the care package was mostly for MIL, but they sorted out meals for FIL. Anyway, the front door was kept locked and a key hung above the door on the inside so that FIL could unlock it if he needed to (He's 6'3" and MIL is 5'). This was fine except the day centre staff would drop them home and sit MIL in the armchair with her coat still on and leave the door unlocked. Of course she thought she was going somewhere so as soon as they'd left and FIL went through to make a cuppa, she would be off. We phoned the day centre a couple of times to explain the situation and asked them to remove her jacket and put it out of sight and make sure to remember to lock the door. They were quite abrupt with us about the whole thing, but we thought nothing of it.

    Then FIL came out of hospital and a big review meeting was called about their care. It was held at the day centre and the manager (XSW apparently) spent the entire meeting shouting at us about their duty of care and how the in laws should go into a home. We explained that this had been discussed in the past and that they didn't want to go into a home, so we would do our best to act in line with their wishes. She just said 'Well they can't make that decision now!' I replied that the decision should not be disregarded out of hand just because FIL couldn't make it now. She told me I 'WASN'T TRAINED!'* and that we couldn't possibly look after them.
    At this point we were raising our voices across the table and everyone else had lapsed into an embarrassed silence.
    My OH then pointed out that he has POA and that the day centre manager is not (as much as might like to be) in charge of everyone.


    Fast forward to us all settled into our bigger house...

    FIL had a catheter fitted by this point and it often gets blocked. No big deal, we just call the nurses and they sort it out.
    On the Monday morning they went off to the day centre as usual. We had a call about 11am to say that FIL was complaining of pain in his lower abdomen, so they'd called the doctor. I replied that his catheter was obviously blocked and the doctor would not deal with it, so could they please phone back to cancel the doctor and arrange for the nurse to pop in.
    I thought no more about it until just before 4pm when they brought them home. FIL was screaming for me to help him and had soiled himself. The woman from the centre said 'the doctor was useless and the nurse couldn't come straight away so she's coming here'. I didn't have time to respond as I needed to help FIL. The nurse arrived around 4:20pm, changed his catheter and all was well.

    On the Wednesday morning, I mentioned to one of the staff when they picked them up that we needed to make sure that didn't happen again and that the nurse was going to pop in and have a word with them about what to do when his catheter is blocked and leave enough supplies with them for emergencies so the nurse could attend quicker.

    On Wednesday afternoon when they were dropped off, the same member of staff pulled me to one side and said 'We had to call the doctor as we had other concerns'. I was more worried than anything, thinking they'd spotted something that I had missed, so I asked what the concerns were. She replied that FIL was always hungry, that he'd lost weight and his clothes were dirty and that MIL was no longer in her happy place. They also felt that FIL's AD was progressing to quickly. They way she said it, I felt I was being accused of something, but figured I was being overly sensitive. I told her that yes, he always asks for food, but that it was just because of the AD and that his clothes were clean on every morning, but by the time he left for the centre he'd usually managed to cover himself in toast crumbs at the least and that they should understand that because he came home covered in whatever they gave him for lunch and that he was actually gaining weight. As for his AD, I didn't see what they were driving at and MIL was always fine at home.

    After she left, I phoned the doctor who had been called out to the centre on the Monday. She told me that they hadn't mentioned anything to her at all. That she had trouble just getting the basic info she needed to examine FIL and that they got quite annoyed with her when she told them that to phone the nurse and that they should have done that in the first place. In her words she found them 'rude and unhelpful'. She told me that she would quite happily speak up on my behalf if needed.

    We then received a letter stating that there was to be another meeting re: their care, it would be held at the day centre and that the in-laws 'new SW' would be there as well.

    I sat at that table and was basically accused of neglecting them and speeding up his AD.

    Luckily the nurse was there as well, so she explained that there was no way I could do that and that she had been weighing FIL regularly and could confirm that he was gaining weight. Also that her visits had clashed with mealtimes on a few occasions and she could confirm that the in-laws were probably eating better than anyone else in the room. The day centre then announced that they had been giving him two dinners! This explained why we were having such problems with him soiling himself on day centre days. I asked them not to do this anymore, but by all mean to give him a larger plate of food. One of the home care managers was there and she confirmed that he was dressed in clean clothes every day and that MIL was fine at home.
    The SW then came round to the house to see the set up we have here and was quite happy with what he saw.

    The day centre manager was asked to come to the house with the SW for another meeting during which I received an apology and she said she would have words with her staff and asked if we would like their key workers changed. We said yes. She also asked if we would like to make an official complaint. I said no because FIL enjoys the day centre and I didn't want to make things awkward.

    She also wanted me to have them in their coats ready for the bus arriving. I said I wouldn't do that as I never know what time the bus is coming and I didn't want them sitting there for an hour with their coats on. I proposed that they give me three rings on the house phone when they're on their way so I could get a head start with getting them ready. She agreed.

    At the next review meeting (held at the day centre again), she told me I needed to 'tighten up' the way I was getting them out the door in the mornings. I'm not quick enough. I explained that sometimes MIL can be reluctant to leave her chair and I can't get her up until I see the bus outside because when I've done that before I ended up waiting outside with her for 10 minutes while she tried to go off up the street. They then complained that I never answer the phone in the mornings. Luckily the SW had taken notes which he referred to and backed me up that I wasn't supposed to be answering the damn phone. The meeting went on until 3:30pm and included a key worker complaining that MIL no longer wears tubigrip type bandages on her legs. I said she doesn't need them and without those things we've seen huge improvement in her oedema. The key worker argued that they're required for infection control. The nurse and I tried to explain that unless MIL has broken skin, she is not at risk of infection and that there is no infection in her legs for anyone else to catch, but the key worker just kept repeating herself.
    Anyway, as the meeting finally ended, I jokingly said to a member of staff 'I hope they're still here'. She said 'Nah, they're away on the bus'. I laughed. What a funny reply.

    It was true! They'd sent them home to an empty house! They knew we were at the day centre. They called the meeting.

    Luckily, I ride a motorbike as this was into rush hour time of day. It's a good job the police didn't see my ride home that day. Many rules were bent or broken. I got home just as FIL reached the front door.

    I now have to endure snide comments from the female staff who come down on the bus and if I'm not there for some reason they question whoever is there to see them in about my whereabouts. They make comments when my 17y/o daughter is helping to bring MIL in whilst I deal with FIL. They make comments when a carer is already here for the toilet call and helps to bring them in.

    I honestly dread dealing with them, but the day centre three times a week is part of FIL's routine. It's the only way he gets out of the house. MIL couldn't care less if she never went again, but from my point of view, it's the time I get to clean the house and quite often catch up with some sleep.

    Due to a screw up with home care this past Monday, MIL went on the bus, but I took FIL up in the car. When I went in they had everyone in a circle for armchair aerobics. Everyone except MIL who they'd sat in a chair with her back to everyone else and left her to sit there. She was rocking back and forth the way she does when she's not happy.

    Anyway, enough. I've probably put everyone to sleep already. :eek:
     
  6. marionq

    marionq Registered User

    Apr 24, 2013
    5,901
    Female
    Scotland
    I'm really surprised about these poor responses and wonder if the management in this day centre is not giving the right direction to the staff. I guess it is a mixed centre with not everyone having dementia and their lack of understanding of your role suggests a lack of training in dealing with both PWD and their carers.

    As you say the 3 days are important so you dont want to rock the boat but I am disappointed at the service.
     

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