Am I wrong to be scared?

Discussion in 'Middle - later stages of dementia' started by theunknown, Jun 29, 2015.

  1. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    I'm not really looking for reassurance, as I know every experience is individual. Just feeling really anxious about tomorrow. My mum's care home rang this morning and asked if I could take her to the hospital tomorrow. She has an appointment with a rheumatologist. I don't have a car, but I'm able to get a bus and then a train to the home. The home are organising transport from the home to the hospital. The problem is that the home has a 'big training day' tomorrow so obviously they don't want any member of staff to miss that.

    To give a bit of background: my mum was sectioned at the end of January 2015. This ended up being changed to a Section 3 and in April she was moved to an EMI care home. In the hospital mental health ward she was suffering from psychosis and hallucinations. It was horrible visiting her there because she was so scared all the time. Originally, the belief was that she had steriod psychosis, but her mental health was still deteriorating after they dealt with that.

    I feel so much better now my mum's at this care home, but I'm terrified of having the responsibility of taking her out of the home and to the hospital, then bringing her back. Over the couple of months that she's been in the home, I've only found her awake once. I had my husband and sister with me and, although she recognised us, she believed that we were only pretending to be her family. It was only when she spotted our dog that she apologised and realised we must be who we say we are :confused:. Even then my mum seemed to be more concerned with having my husband there than me and my sister. That doesn't bother me, because he's helped her in lots of ways over the years. It was lovely being able to talk to her, but she's at the stage where she doesn't know she's in a care home. I'm terrified that I'll make this experience more distressing for her, because I won't know how to reassure her if she gets upset. We've never had an easy relationship, but I love her very much. She was already on the mental health ward when I was told that they'd taken her in, so I've never had the responsibility for her mental health and how it affects her. Anybody else had an experience that compares with this?
     
  2. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Hi theunknown

    Im afraid I don't have directly comparable experience to yours. However, on the face of it, I'd say no, you're not wrong to be scared - or apprehensive, at least. Really it does sound as though your mum needs someone from the home to accompany you. I wonder who is providing the transport? Is this someone who would be able to help you if needed?

    I don't want to worry you, though, and I would hope that the home have assessed your mum's needs for this trip. Possibly if they had discussed this with you, you would feel reassured.

    Is there time to ask the home about this in the morning? And certainly when you get there, and before you set out for the hospital?

    It may be its all been thought about. I do hope so, and I wish you well for tomorrow :)

    Lindy xx
     
  3. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    Thanks for responding Lindy. I do trust the home to have my mum's interests at heart - well, as much as I can after her only being there for a couple of months. It was me who chose the home. I am planning to tell them when I get there that I'm very apprehensive. The lady who rang me suggested that I come early so I can join in lunch. This will give me the opportunity to get across that I'm finding the responsibility pretty scary.
     
  4. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    That sounds positive, theunknown, at least they have thought about it. If you can join in lunch, it will give you the opportunity to see how your mum is, and the staff time to review the position if needed. Sound good.

    If you continue to have doubts, would it be better to re-arrange the hospital appointment? I'd never normally suggest that, but in this case, it just might prove unavoidable.

    All the best with this, it really does sound as though the home are on the ball, it's just unfortunate timing with their training day :)

    Lindy xx
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,725
    Female
    London
    Why do they think a training day is more important than actually caring for someone? Who is looking after the other residents while they do that? Can't this appointment be rebooked for a more convenient time? They certainly shouldn't be putting this on you. She is their responsibility now and they probably get paid well for it. If you feel you can't do this, let them know. They shouldn't be able to bully you into anything you are not comfortable with.
     
  6. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    Thanks Lindy and Beate. Beate, they certainly do get paid plenty to take care of my mum. My top-up contribution is not much less than the LA contributes. I suppose I'd feel guilty if the care home are asking me to help my own mum and I don't feel able to provide it. I don't feel bullied (the lady who rang me was very nice), but I just felt I would seem pathetic if I couldn't even manage this. I must admit, my first thought was why not rearrange the appointment for a non-training day. I know I could ring them tomorrow and they'd make sure everything was sorted out, but I feel that because they've asked I have to do it. It's probably a consequence of having a controlling mother who could make me feel quilty of being a bad daughter at the drop of a hat :(
     
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    You certainly shouldn't feel pathetic. After all you and your mum have been through I think it's only fair and realistic to look for support on this :) xx
     
  8. 2jays

    2jays Registered User

    Jun 4, 2010
    11,598
    West Midlands
    I point blank refused to take mum to her further appointments without a carer after My husband and I took her to an appointment - him to drive, me to stop mum trying to get out of the car and then it needed both of us to keep her "entertained" whilst waiting for her appointment. She was constantly on the go...

    This was at a time when mum was considered placid....

    If you have any concerns at all, in my opinion, if they can't find someone to come with you, then I think the appointment has to be re-arranged for a time they can give you support.

    It's not like they only got 2 days notice is it




    Sent from my iPhone using Talking Point
     
  9. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,514
    Female
    England
    My husband had two hospital appointments and each time a carer went with me. I drove and he sat with my husband. He did all that was needed when we saw the specialist and when he had his scans. My husband was reasonably compliant for him.

    Could I have done it on my own, I believe I could not have. The fact that I was, like you, worked up beyond belief made me feel ill. The not knowing how he would react was the worst.

    The care home could not do all the training in one day, the residents need care so one person to train on a later day would not be difficult to arrange.

    If the appointment is not urgent then arrange it for another date.
     
  10. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    Thanks everyone, for the sympathetic replies. Like you, 2jays, I think I'm going to have to say 'no' if I'm asked again. I left home at 11am and got back at 5pm. The day involved (for me) a hot bus, a hot train, a hot care home, a [very] hot ambulance, a hot hospital; and then the same in reverse. If you drive, the home's actually only about 20 minutes away from me, but that's public transport for you. My mum probably spent about 10 minutes with a doctor and another five minutes with a consultant. I got lucky in the end, as somebody in the care home decided that one of the carers should go with us to the hospital. I had mentioned how apprehensive I was. The person who accompanied us was a lovely man. He left decisions to me, but just the thought that he worked with people like my mum and that she seemed to like him because 'he's spanish', made all the difference. My niece's partner is Spanish. It turns out he was actually from Romania. I think it must be the accent!

    There's no way I'd have been able to handle everything myself. My mum got more and more distressed and it was a very long day for her. When the doctor left the room to get the consultant I thought we were going to have to physically restrain my mum from leaving. She was struggling out of her wheelchair and insisting we needed to leave 'straight away'. The carer kept talking to her, trying to sooth her, and luckily the doctor then came back. I can't imagine having to hold onto my mum and forcefully stop her from leaving somewhere she's frightened to be.

    On the plus side, my mum met a lot of people who were very kind to her today. Although she may not be able to appreciate this, I certainly did.
     
  11. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Thanks for letting us know how you got on :)

    I agree with you, you should have someone from the care home with you on such occasions. When I read back my original comment, I thought I wasn't as definite about that as perhaps I could have been :eek:

    I'm glad you got there and back safely - but what a palaver for 15 mins with a medical team! :eek: Hope you're getting a rest now :)

    Lindy xx
     
  12. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    Not so much getting a rest, as enjoying a drink :)
     
  13. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    That as well......whatever floats your boat !! :D xx
     
  14. 2jays

    2jays Registered User

    Jun 4, 2010
    11,598
    West Midlands
    Hope it's a double "what ever takes your fancy" drink :D

    Well done. You did it. Never again will you have to... I hope xx


    Sent from my iPhone using Talking Point
     

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