1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

A lifelong friend and me

Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.

  1. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    I may join you in that self treat :)
     
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #82 Palerider, May 29, 2019
    Last edited: May 29, 2019
    As I suspected, mum was tired. On our return she went to her chair and fell asleep. Just woke so I'm toying with the idea of a chinese take away tonight, funnily mum still likes them -probably because they can have a sweetness to them.

    Edited; This situation may change as mum is now hiding from me upstairs.
     
  3. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Ah, its ok....the senna is still having an effect, mum was on the loo and she said she was too embarrassed to tell me. She said she's not sure whats wrong but she's struggling to open her bowels (which is causing more urinary incontinence than usual, as a full bowel plays havoc on the water works).

    So its a home cooked dinner. As mum hasn't eaten all day I'm doing a quick roast and two senna tonight again.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    Lets hope for some positive development on the senna front.
    She will feel much better after that.
     
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Well she has actually eaten all of her dinner, so she was hungry. We'll see how things go (as far as is possible) but she seems ok (pleasantrly lucid and quite happy)
     
  6. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,070
    Merseyside
    Have you tried prunes or prune juice to help the bowels?
     
  7. Susan11

    Susan11 Registered User

    Nov 18, 2018
    1,469
    Or an extra half a weetabix everyday is very effective
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Thanks Cat27, if no luck by tomorrow I will suggest this to her. I think she used to like prunes, so it might not be a huge problem in trialling
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Thanks Susan11, at the moment she keeps on avoiding breakfast. I'll see if the senna works by tomorrow and try Cat27's idea if mum will give prunes a go.
     
  10. Susan11

    Susan11 Registered User

    Nov 18, 2018
    1,469
    Good luck. Hope you find a gentle solution
    Best wishes Susan
     
  11. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    On the brighter side, mum has been successful in resolving her little problem. Which has seen her have more clarity today (which I am not sure is a good thing in many ways).

    I walked round the supermarket today just to get some bits and bobs, plus I needed to enjoy not having mum with me (she stayed in the car). I don't know why but I just burst into tears and had to walk out. I don't what happened but I couldn't stop blabbing, people asking me if I'm ok and me answering trying to catch my breath 'yes I'm ok' . I have to scratch my head and figure that one out??
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    Things just catch up with us sometimes @Palerider - I frequently get panic attacks in the middle of Sainsburys :rolleyes:
    I hope you managed to get what you needed at the supermarket.
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Thanks Canary, maybe complete frustration. I have to return to work next weekand I'm getting quite anxious about it. I've contacted the SS about the POC and mums social worker has got back to me via email, below:

    We are unable to obtain a care package via the care agencies we commission with.

    I have discussed this with a Senior Manager and I am asking our care brokerage to consider commissioning with an agency who we do not ordinarily commission with, but who could provide care in the xxxx xxxx area.

    I will be in touch as soon as I can update you.​

    I can feel the anxiety rising from the pit of my stomach, I actually feel quite hopless, I'm physically shaking writing this and I can't quite find the words to say what I feel inside.
     
  14. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #94 Palerider, May 31, 2019
    Last edited: May 31, 2019
    Just been on the phone with mums social worker (who is fab), she's explained that she has pushed this now and indicated that I will make a formal complaint to her senior management, which she said has made them re-think about out-of-area commissioning. Waiting to hear back about a POC. She said the other alternative is respite care to give me a break. Thats fine, but I don't need respite, what I need is a POC so I know mum has had breakfast, is put in a taxi to day care and in the eveing she's had her meal and meds when I'm at work.

    Just picked up mums social workers email:

    I have left a message on your mobile to phone me, but advised I would update you by email as well.

    We are looking for providers outside our core providers and I have been promised an update by the end of today.


    If we struggle to find care at this time and supporting Mum is affecting your health and you need to return to work, do you think she would consider a period of respite until we could source a provider. This would also give you an opportunity not to worry about Mum being at home alone all day. However, I am conscious that Mum will probably refuse this, and maybe it would be a Best Interest decision – however, at this time, this would be another option to consider.
    I concede it may come to this...:(

     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Well its the end of the day and no news on the POC. I know if mum does go into respite she likely won't be coming home again. I feel utterly let down and very done with this at the moment. I have to sort mum out and then I need to think about where this is all going......
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Well I've slept on things, not that I feel any better.

    Maybe I am really struggling to let go here, does anyone have any thoughts or suggestions? Right now I could do with some.
     
  17. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    Maybe now is the time? I can see you accept the inevitability that your mum will move to a CH sooner or later. Perhaps you need to give yourself permission to actually arrange it. Remember - you are acting in your mum's best interests here, getting her the care she needs so that she will be safe and looked after day and night. You can't do that and you're going back to work next week... How will you work if you are constantly worried about your mum?

    My advice (FWIW) is take the respite and if it leads to permanent care, so be it. Your mum isn't going to get better. But please don't beat yourself up - it's a very hard thing to do and it's no wonder you are struggling. Take care.
     
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #98 Palerider, Jun 1, 2019
    Last edited: Jun 1, 2019
    Thanks Jaded'n'faded.

    I was walking round the shops after signing off earlier and thinking about how much mum has changed in the last few weeks, which has been quite drastic in some respects. She has stopped helping around the shops and just follows me. She has no more interest in flowers, having been a shower over many years and floral demonstrator. She won't even stay out now for a coffee and some cake, just wants to come home. I can see she has become more anxious about being 'out and about' which means we return home and the day is spent trying to occupy my time while mum fidgets and faffs and then falls asleep only to sundown as the afternoon draws to a close. Things at home are becoming more and more difficult, mums a sweetie (most of the time) so it makes coping with it a bit easier, but in the end it will become too much. I know she will wander when I go to work if she stays here on her own.

    Even in this there is still meaning that I am perhaps clutching onto, but its as if the straws have been greased and no matter how hard I try they are slipping.

    I know your right deep down Jaded'n'Faded. Sometimes we need to hear things we don't want to hear, but thank you for saying it. I do need to give myself permissison, thats spot on, I hadn't thought about it like that.

    We'll see what comes on Monday and then from there start to make some decisions, this bridge has to be crossed at some point as painful as it is.

    Thank you
     
  19. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,032
    Female
    Chester
    My situation is different to yours and in my case circumstances made my decision process easier and clearer.

    When crisis hit my kids were 8 and 12 and it was clear it wouldn't work for them to have my mum with us and I found her a sheltered extra care flat, a model West Cheshire like and push, but which I knew about through contact with social housing at work (charitable taxation for corporate bodies) - mum is self funding so I had plenty of choice as well. So I haven't yet had experience of care homes, although my mum is now at a level that wouldn't be suitable for an initial move into sheltered extra care.

    I think that the best interests of everyone involved are often lost sight of when considering the PWD, and the carer often sees it that way as well. In my case I could see the needs of my children and not myself, although as it happens the 2 coincided in terms of where my mum lives. You need to consider what you can cope with, even if your mum is in daycare whilst you are at work, will you be able to cope when you get home (presumably after being on your feet all day). We all need somewhere in our day to relax and chill otherwise we can't function, at best, and have a breakdown at worst. I haven't read all your posts but think that some of these comments apply from what I have read.

    Dementia is a disease which keeps on taking, by the nature of how we react to the PWD, in terms of wanting to make them as happy as possible, and it is hard to accept that this is often achievable with this illness and safe is the best we can do. I think we can see all the things the PWD might 'lose' by going into care, but often these things are no longer important to them or already lost, the needs of an elderly person without dementia are very different to those of a PWD.

    The generalised anxiety that often comes with dementia is often alleviated by having a team of people to care for them and less to worry about.

    I was very upset when the care manager said to me the day she moved in your mum is safe now, you don't need to worry anymore. I hadn't even realised she wasn't safe and given she was in early stages thought she still had more to life yet. In reality whilst she missed her house (uninhabitable) and her friends (she lived 200 miles away from me) she is very happy where she is, something she has told me on and off over the 5 years she has been there.

    The best you can do isn't necessarily keeping your mum at home, and if it is to the cost of your health it isn't the best for both of you.

    Many people have posted on TP over the years how settled their parents were once they were in a home and how they wished with hindsight they'd taken that decision earlier.
     
  20. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #100 Palerider, Jun 1, 2019
    Last edited: Jun 1, 2019
    Yes I have realised these points, mum though able to remember my name, no longer knows who I am. I'm a familiar face, thats all. The neighbour was outside repairing his fence and every bang made her worry about what was going on and I had to reassure her. Home for her at the moment is here we we now are. She did tell me a few weeks ago she gets quite nervous about things on her own, which made me realise this situation is changing.

    I have to think about the future now, whats best for mum and also as much as I feel I'm letting her down, what is also best for me. It is a slow process for me, I'm not the worlds best at letting go I'm afraid. Even thinking about it now makes me well-up inside -but its a starting point. As Jaded'n'Faded said, I have to give myself permission to make the decision and that is something I need to do.

    Thanks for your help -its appreciated
     

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