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.

Others who think they know better!

Discussion in 'I care for a person with dementia' started by Helly11, Oct 22, 2017.

  1. Helly11

    Helly11 Registered User

    Apr 24, 2017
    After much discussion, research and planning, my sister and I took the decision to put live-in care in place for our parents and this starts tomorrow - replacing the four daily visits from carers that have been going on for just over a year. We are intelligent, sensible women, who truly believe that this will be beneficial for all four of us. Our parents' quality of life will improve and the immense pressure on both of us should be significantly reduced. We certainly wouldn't embark on such costly care, if we didn't think it was the right thing to do.

    So it is irritating, and even insulting, to have (probably well-meaning) neighbours, current carers etc questioning why we are doing it, what it will entail and so on. We have prepared encyclopaedic levels of background information so that all concerned know what our parents are capable of and what they need support with. Having a neighbour ask, therefore, 'Will the carer still let your mum go out for walks on her own?', is just unnecessary - we know Mum is currently safe to do that and have advised accordingly. I was almost tempted to reply 'No, she will keep them both prisoner and not let them do anything they want to'! I wish people on the outside, who have little or no experience of dementia, and who aren't on the inside of our situation, would mind their own business! Some actually know my sister and me well and know how much we care about our parents and how hard we have worked to support them and so should also know that everything we do is in their best interests - frankly I'm offended by some of these interventions...but trying my best to ignore them. Have others experienced this kind of thing? I'm sure the answer will be a resounding 'yes'!
  2. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    Sadly the answer as you predicted is yes and I'm sure there are many other members of this forum who will also agree with me . My mother-in-law was diagnosed with mixed dementia about 2 years ago and we put carers in place she is self funding. She has a charity who provide her with a home library service. One of the volunteers recently retired and the new volunteer who is due to come phoned my mother-in-law one day when I was round there on another matter. I answered the phone and she asked me if my mother-in-law could give her full directions to get to her house. I introduced myself and told her that in fact my mother-in-law had dementia and she wasn't capable of giving directions to anybody. When the volunteers turned up when I was still in the house I explained again on the doorstep that mother-in-law was ill and gave a very brief outline of the situation she was going to find herself in dealing with my mother-in-law. I explained to her that she also was very deaf and had hearing aids which we in fact have bought privately for her due to the particular nature of her hearing loss. The volunteer then said oh but you can get much better hearing aids somewhere else why are you bothering with this just because she has dementia . I was quite shocked and told her in a roundabout way the fact that I have paid for her very expensive hearing aids was really none of her business.

    So far that is about the only encounter I have had which I have found very patronising. Unfortunately I have found that unless you have first-hand knowledge of dementia people just simply can't grasp what's involved.
  3. SnowWhite

    SnowWhite Registered User

    Nov 18, 2016
    Helly, I think you and your sister are doing a great job. As you have both parents to consider it seems the ideal solution. I used to take my mum to a lovely dementia support group and there were about 4 people there who came with their live in carers and I got to know them all and they seemed really caring people.

    You should just close your ears to what others say, safe in the knowledge that you are doing what's best for YOUR parents. X
  4. Bassman.

    Bassman. Registered User

    Aug 31, 2015
    Only your sister and yourself can decide what is the best course for your parents ongoing care, and from information you have posted you are in my opinion doing the right thing after talking everything through and doing the proper research .It is basically no-one else's business.
    I have a similar problem [ not with care issues ] where others have passed comment about a certain situation we are in with my Mother without knowing the full circumstances, and Chinese whispers between several people changed the story dramatically.
    It isn't something I can go into at this moment , but if and when the issue arises and it is appropriate I intend to create a thread and ask advice from those I trust i.e YOURSELVES.
    For the moment you and your sister are doing what is right for the situation that you find yourselves in and just keep giving the amazing love and support you have for your parents.
  5. Helly11

    Helly11 Registered User

    Apr 24, 2017
    Thanks, everybody, for your comments and support. We know we are doing our best for our parents and that is all any of us can try to do in the face of this horrible condition. I wouldn't wish it on anybody, but maybe one day these people will find themselves in the same position and understand us and our decisions better.
  6. Aisling

    Aisling Registered User

    Dec 5, 2015

    Hi Helly 11
    I understand completely. It is difficult to ignore some people and their "advice". But please try. I wish some people would keep silly questions and opinions to themselves. I have been there and have the tee-shirt! Without Talking Point, I would have gone totally mad.

    Virtual hug,

  7. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    I agree they should keep their opinions to themselves. What I wonder, more generally, is whether this might be their attitude to a sudden change? Even if it is an annoying circumstance, people tend to dig in at the thought of a change - what if? what will happen? how will it impact on....?
    For the sake of keeping everyone on side, I'd be tempted to smile, say thank you for your advice and then just get on with what you intended to do; you have obviously thought it through very thoroughly. Once it is all (hopefully) going smoothly opinions may improve or, more likely, they will forget they even had a different opinion. Just don't expect any thanks for doing it properly in the first place!
  8. LizK

    LizK Registered User

    Dec 18, 2015
    I was given advice from a friend of my husband's who lives in Australia and whom he hasn't seen for 50 years. He had no concept of how ill my husband is or how incapable. I emailed him that his advise was inappropriate and I didn't want any more of it. I haven't heard since.Good!

  9. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I have an aunt who's lived in Canada since the late 50s and has visited rarely. After a brief visit to my mother, by then with moderate dementia, she told me it was her own fault she'd got dementia, because she wasn't busily buzzing around socialising non stop like the sprightly 90 year olds at her church. And why were we 'allowing' her to sit watching television?
    That aunt has always been the sort of person who knows what's best for everybody else, and prides herself on speaking her mind, aka upsetting everybody time and time again.
    She opened her great big mouth again after my mother died - different matter but completely untrue and very upsetting.
    I do still send a Christmas card, but that's it. My sister will have nothing to do with her any more.
  10. canary

    canary Registered User

    Feb 25, 2014
    South coast
    How hurtful @Witzend . I think now having anything to do with her is a great idea!

    Unfortunately all this talk around at the moment of preventing dementia by eating the right things,keeping yourself buzy and your brain active is just going to increase this sort of prejudice :mad:
  11. Helly11

    Helly11 Registered User

    Apr 24, 2017
    It's interesting to read about all of your experiences and thanks again for the support. The carer began yesterday and seems lovely - warm and friendly, but also efficient and on the ball. Mum and Dad seem to have received her well. Fingers crossed things continue in that positive vein! My fear is that, like a small child who thinks his/her first day at school will be their only day at school, they might start asking when it is going to end. Hopefully, though, they will quickly become used to the new set-up and forget all their previous concerns and objections. Of course, the next hurdle will be explaining that a second carer will come in in due course, and that the two of them will act as a 'tag team'... I must confess that I had a little cry about it all in the shower when I got home - mostly relief that the whole thing was now under way, after so much talk and agonising and planning.

    And my sister and I are definitely very much looking forward to our first visits there as daughters, not carers, and being able to spend time chatting to Mum and Dad and just enjoying quality time with them, instead of contending with the usual multitude of dementia related household issues that we are all so familiar with. Sadly, unless you have experience of these, it's impossible to appreciate just what can arise as a result of this horrible condition - and my parents are still only at the moderate stage, so I know there is a potential world of woe to follow! I do find TP invaluable for helping me to understand that our parents' behaviour is normal in the light of their dementia. Thanks to everybody on here who shares their experiences.

    The whole 'what you can do to avoid' dementia winds me up, by the way. My Mum was a model of what to do - hardly ever drank, lots of walking, constantly doing crosswords and puzzles etc etc - yet still developed it. Perhaps without those things, it would have come on earlier, I suppose. Or perhaps it was more to do with her regularly getting slapped about the head by her parents as a child - which she was reminding us of only yesterday. Who knows? It seems all this medical advice about all kinds of conditions is designed with a view to our achieving the impossible - a forever healthy immortality! Everything in moderation and just enjoy life, I say.
  12. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    That's an interesting point Helly11, my mum had also lead a healthy life, never smoked, one glass of wine a week with a Sunday dinner, ate healthily and would always walk if she could rather than drive. In spite of this, we started to see symptoms in her mid to late 50s. Of course every case is different and it may help in other cases but it has made me feel less inclined to live a life denying myself of things I enjoy (in moderation of course)!
  13. MaryH

    MaryH Registered User

    Jun 16, 2016
    Ottawa, Canada
    Some part of it may be genetics, primarily in the case of early onset dementia.

    But there are multiple studies that showed eating a healthy diet, exercise and socializing helps to hold the line.

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