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.

  1. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    I very rarely post anything but briefly my situation, so that you know a bit of background, is that I moved Mum in with me nearly 4 years ago, after she was emotionally and financially abused by my sibling who removed Mum from her home after her partner died. She did this without informing me. She had not had any contact with Mum for over a decade but saw this as an opportunity to fund her extravagent lifestyle after splitting up with her husband, full knowing Mum had some sort of dementia. I eventually found out where Mum was and informed Police and Social Services as it was a serious safeguarding matter. To cut a very long and painful story short, there was a 3 hearings at the Court of Protection and thankfully, the Judge a) awarded me "custody" of Mum, b) a Panel Deputy was recruited to look after her (much diminished) funds, and c) a court order was issued to my sibling which allows her 2 hours per fortnight only, to visit my Mum in my home which is overseen by a SW. I have to go out to allow my sibling privacy with Mum. However my fiance takes the afternoon off work and sits in the other room as I don't want my sibling in my house without anyone there!

    I have cared for Mum single-handedly for almost 4 years. I do absolutely everything for her as she is sadly unable to do anything for herself and no longer speaks either, although she does have a little bit of mobility using a frame and can use a cup to drink from. Other than that, I do everything and although it's very tough, and my whole life is dedicated to her, I do it because she's my Mum and I love her and I don't want anyone else to do it.

    Recently, I have been very much feeling I would like a few hours more to myself as Mums condition is worsening and she is pacing such a lot, crying, wailing and making horrible noises. I take her out every single day and that pacifies her for a couple of hours but I am finding this all very difficult. I want to continue to care for her but I really need a break and more respite than the 2 hours per fortnight. We live very rurally so there are no day centres or anything like that, even if Mum would go!

    I have contacted the Carers Trust and they agree I need some time for myself to continue in my caring role both as in more respite hours per week and also a break away as I'm crying a lot just lately and am really not feeling very well in myself. I was told to contact my GP for a referral. That in itself was a nightmare as he seemed incredulous I should need help and how dare I contact the Carers Trust!! Our surgery are not really clued up on Dementia at all and so I rarely contact them for anything. I have always just had to cope with Mum alone and get on with it! However I am a very positive and determined person and I've managed up until now, with all the love and strength I've been able to muster!!

    Anyway after a lot of pushing, I have finally had a letter to say the GP has referred me but as yet the Carers Trust has not had it. I also feel maybe the wheels move very slowly so, as I am really getting very desperate for help, contacted a local care home that has been thoroughly recommended by my friend, to enquire about a few days care for my Mum, in order for me to have a complete break. Unfortunately, they only do 2 weeks minimum. Being Mums first time away from me she is going to be absolutely in pieces anyway so whilst 2 weeks respite sounds like heaven to me, I could not do it to her. The trouble is anywhere else locally are not dementia homes, only old people homes so I'm unsure what to do.

    My questions are:
    1) Is this normal for care homes to only take someone for respite for 2 weeks minimum?
    2) The home has said they would come out to see Mum to do an assessment to make sure they can take her. I understand that but am unsure how they would assess her?
    3) I'm worried as to whether I should let the court know I am considering help? If my sibling were to find out I can see it all going pear shaped and going back to court.

    Can anyone advise me please?
     
  2. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    879
    Middle England
    Oh my goodness, you are having a difficult time. It seems imperative that you do have respite and to be honest in my opinion 2 weeks seems about right. That length of time will give you chance to unwind, relax, rest and recuperate.
    I am not sure if all care homes stipulate 2 weeks minimum but I'm pretty sure that i've read something similar on earlier posts.
    Don't fret about the assessment, it is a professional approach to seeing what care needs your mum will require. It gives them a chance to get to know her before she stays with them.
    As for your last question, I don't know that you have to tell CoP of the respite stay. I never did when my mum went, as in my eyes though she wasn't staying under my roof she was still under my care.
    Hope that things work out well for you. Please keep us updated if you feel up to it and it helps you.
    x
     
  3. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    Thank you so much. Yes I can categorically say these have been the worst years of my life!!!

    Whilst I know 2 weeks would be fantastic for me (although of course I would continue to think of Mum and worry about her every second, totally defeating the object of respite), I do think for a first time, its not fair to her.

    I'm not really worried about an assessment but I do wonder how they can get to know my Mum or ask her any questions when she doesnt speak or understand any conversations anymore though?

    Very useful point re COP. Thanks for that.
     
  4. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,071
    They will ask you the questions if your Mum isn't able to answer herself. By visiting they'll be able to assess her mental/physical capabilities such as what she can and can't do for herself, see whether there are any behavioural issues, and find out things like whether there are specific dietary requirements etc. The assessment is to make sure that they can meet her needs.
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,629
    Female
    London
    1. Sadly this is very normal. I had a heck of a job finding a care home willing to do only one week at a time!

    2. They will need to assess how much help she needs so will ask YOU lots of questions about her presentation and behaviour. Some care homes only take the nice, docile dementia patients. You need to be honest here and also ask plenty of questions yourself. When she goes in, label all her clothes and belongings, take nothing valuable to the home and best write a little manual about what is important to your Mum, likes and dislikes etc.

    3. Respite is nothing to do with the COP and also a completely normal occurrence when looking after someone with dementia. It does not mean that you are a bad carer or cannot cope! Everyone needs a holiday now and then to recharge the batteries, even people who aren't carers.

    Best of luck!
     
  6. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    Thank you. I would have to do all the talking then!! The trouble is just this alone will make her so distressed, let alone actually going away for a few days. Wish there was another way.
     
  7. annierich

    annierich Registered User

    Nov 11, 2015
    58
    Please think about yourself. If you let your Mum go into the care home for a fortnight then you can really recharge your batteries and come back to looking after your Mum feeling properly refreshed. If you don’t have a proper rest then you might be at risk of complete career breakdown then you won’t be any use to your Mum at all.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    I think it would be an extremely good idea for you to have a break.

    The only thing I would like to mention is costs. Who is paying for it? If your mum would be paying for it then it needs to be OKed by the COP deputy as he is in charge of her finances. If the LA would be paying part/all of it then you will need to work with Social Services. Maybe contact them for a carers assessment for yourself - and maybe an updated needs assessment for your mum too.
     
  9. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    #9 tryingmybest, Oct 3, 2018
    Last edited: Oct 3, 2018
    Thank you Beate. Looks as though I will possibly have a problem with it being less than 2 weeks then as that is the only place I would be able to use as its the only place that takes PWDs around here :(

    I understand a lot of these homes only take docile patients. I would say Mum had been really easy for the first couple of years but she has changed a lot over the past 18 months or so and gets very distressed although my thoughts would be that she probably would be fine elsewhere as I've noticed that on the couple of occasions she's has had an overnight stay in hospital she's been as good as gold but who knows how anyone will be in a different setting? A little manual is a good idea and something I had thought of earlier today.

    I worry as it was such a contentious court case, that if my sibling finds out I'm planning on doing this they may inform COP and try and cause trouble again. Its been an ongoing saga as it is!!

    Thanks for the good luck wishes!
     
  10. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    Thank you Canary. I really feel as though I need a break especially as 18 months ago I was very poorly and had several scans etc and have had ongoing problems and have literally dragged myself about at times in order to care for Mum.

    Re costs I will speak to Mums Deputy but am sure it won't be a problem. After all a short stay for Mum in a carehome whilst I have a break is going to be a whole lot cheaper than me having a breakdown and Mum going into care permanently. Lol.

    Re SS as Mum is self funding and lives with me they have refused in the past to do either a needs assessment for Mum, nor a carers assessment for me in 4 years so we've not had one although I am quite aware we are entitled. They just say we are not!!! Thats another story!
     
  11. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    I must admit Annierich, for the past couple of weeks or so I truly have felt on the verge of carers breakdown. I just think it's not fair on Mum for her first time for it to be such a long break. I'm also secretly fearful that if I have more than a few days break I won't want to come back. Lol
     
  12. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    The Carers Trust called today. They suggest I do look into having an assessment for Mum and if they will take her, to book for a full fortnight so I get a proper rest. They will help with a grant for me to have a few days break away. Part of me feels I really can't do this to Mum but last night I just went to pieces in floods of tears and then again, today, just talking to the lady from the Carers Trust, so I do realise I'm starting to tip over the edge.
     
  13. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    ((((((((((((((((((((((hugs)))))))))))))))))))))))) @tryingmybest

    You need this break.
    Your mum will be fine
    If you do break down what will happen to your mum? You need to look after yourself so that you can keep on caring for her
    xx
     
  14. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    Aww thank you for the hugs. Hugs back for you too. Ive decided to go and view the home today and have an appointment with the manager as I have 2 hours respite every fortnight as the wicked sibling visits. I cant stop crying now so I know I have to do something. Mum was so distressed all last night and kept getting up and banging on my door crying, (Ive had to put a lock on it as she kept coming in), so once again I've had no sleep. I just feel so bad as my Mum will truly hate being away from me as is so clingy :(
     
  15. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    So this afternoon I visited the care home that I thought would be a possibilty for Mum so I can get a little break.

    The female manager was very genuine, kind and softly spoken and as she showed me around she introduced me to all the staff who all seemed lovely and very fond of her. In fact, they've had the same team for over 3 years and haven't had to use any agency staff which I felt was a good sign.

    The rooms were bright and spacious and all had ensuites. The lounge and diningroom were modern but fairly homely. Activities are held 7 days a week, twice a day and very varied which would be important to Mum and so I was quite impressed. Indeed there were a group of residents doing some art around a table in the lounge.

    I ran through a few questions I had written down when we went back into the office and was satisfied with the responses. The mangeress even said she would be more than happy for me to take Mum along to join in the activities free of charge before making a decision.

    All in all, I think as far as care homes go, it is one of the good ones but...........everyone seemed so much worse than my Mum!! Although she can't do anything for herself she still looks lovely as she loves her clothes and hair and makeup so looks fantastic and is a very smiley person with others and tries to engage with people despite not having much communication and I didn't get the feeling there was anyone there she could pal up with (27 residents) and I rather think she would be upset and wonder why she was there with people that to me, appeared so much worse. Am I expecting too much? I know its only for 2 weeks but.......
     
  16. Baker17

    Baker17 Registered User

    Mar 9, 2016
    249
    That was lovely of her to say that you could take her along to join activities free of charge you don’t get many like that sounds like where my husband is they have a similar lookout on things
     
  17. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    Thank you. Thats what I thought. It was very kind of her.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    They always do.
    If its a home til the end then you would expect to see people at all stages. If they were all at your mums level this would mean that once the dementia advanced they would be given notice.

    Its a bit like when a child starts school. On their first day they seem so much smaller and younger than all the rest of the school, but within a few weeks you realise that, actually, they fit right in. Also, mum didnt seem to notice that others were so much worse than her.
     
  19. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    617
    Female
    Yes I understand. They've just won a gold award for their end of life care so yes they do care for people until the end.

    I still think that Mum would definitely notice but......I've got to do this haven't I in order to keep going?

    I hope your back is more comfortable today Canary and thank you for taking the time to always respond when you have so much to deal with. Huge hugs.
     
  20. marionq

    marionq Registered User

    Apr 24, 2013
    5,750
    Female
    Scotland
    I find that my husband is incredibly tolerant of others in his day centre and in turn they put up with him and indeed like him. His memory is nil so they are all strangers ina sort of Groundhog experience and he hasn’t remembered a name in years. They greet him by name and joke with him. I am a fairly fit active 74 year old but he is happy to sit with elderly ladies and men and chat away.
     

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