1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Making plans

Discussion in 'I have dementia' started by Tomsnan, Jun 26, 2019.

  1. Tomsnan

    Tomsnan New member

    Nov 27, 2018
    I was diagnosed with Alzheimer’s last year after an initial diagnosis of vascular dementia in 2016, this was changed after a brain scan. I am 63 and have lived alone since losing my husband in 2002 and moved to be closer to my son and his family after the initial diagnosis. They have been a godsend my daughter in law has is brilliantl and would do anything for me and we get on really well. I started on donezprazil last year and have coped really well until very recently. I now realise that I need extra help with day to day stuff and although my son has taken over most of the financial stuff which was a big help I don’t want to put everything onto them I worked on a dementia ward for many years and looked after my dad who had vascular dementia until he died so I know how this thing works. I suppose what I’m asking is when is it time to throw my hands up and say I can’t do this on my own anymore, I have always made it clear I don’t my family to have to take care of me when things start to get difficult I would not wish that on them I’d rather go into a care facility but when? What do I do in the meantime ? I know I need more than I’m willing to ask from my family but not much more than that.
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    Morning Tomsnan.
    Do you have anyone coming in to help with your care from an outside agency? My partner has had that as well as me doing most of the other stuff for about 5 years. We moved into extra care housing about two and half years ago. You would have your own flat, but in some facilities you have an onsite restaurant and communal lounge too. There are care assistants always on the premises and a care plan, with pull cords if you need someone in an emergency.
    It's just an idea for a half way house rather than commit to a care facility at this stage.
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @Tomsnan
    you are wise to be planning ahead and kind to want to accept support so that family aren't taking on all tasks for you
    might you contact your Local Authority Adult Services and arrange an assessment of your care needs, as you have a right to this ... maybe write a list of the daily tasks you are finding more difficult to do for yourself, so you can give them an idea of the support you feel you need .. hopefully, then, a care package will be put in place

    of course, if you have savings and income enough to pay yourself, then you are free to provately arrange any help you want
    here's a link to the AS directory of local resources
    and pages on paying for care
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
    It is so lovely that you are able to do so many things and are aware of your family.

    I think that if you are asking the question it probably means that you could do with some extra help now.

    What sort of things do you need extra help with?
    It might be things like housework, or shopping.
    Maybe you could do with someone preparing meals for you, or perhaps helping you to take a bath.
    All of these things you could get someone in to do it.

    Alternatively you could move to extra care sheltered housing, as nae sporran has done.
  5. Tomsnan

    Tomsnan New member

    Nov 27, 2018
    Thank you for your replies. I moved into supported housing 2years ago, it seemed ideal, a 1bed bungalow in a really nice setting and closer to family. 6 months after I moved in the council stopped the on site wardens due to cuts and instead was a weekly visit from a named housing support officer then earlier this year that too was stopped due to financial cuts. I have little to no savings and the only place suitable nearby is a council funded block of supported bedsits that have a very bad reputation.

    I had been having a 6monthly visit from the dementia nurse at the memory clinic and this too has now been reduced to yearly visits. I think this is probably what is playing on my mind that there is now little or no support out there and what there is available is the absolute minimum because I have family living a mile away. The authorities don’t get it that I have a wonderfully supportive family but maybe that’s not what I want as this thing progresses. I did go once to a dementia group but everyone there was older than me and I wasn’t comfortable with being faced with what the future holds.

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