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How to get support for my mum (which she will accept) in becoming a carer?

Discussion in 'Recently diagnosed and early stages of dementia' started by em_t77, Nov 15, 2016.

  1. em_t77

    em_t77 Registered User

    Nov 15, 2016
    Having read through a few threads, I can see that many of you are dealing with far more complex issues than I have questions about - we are still at the earlyish stages of this path, but I desperately want to get some support in place now so that when things get harder we're not starting from scratch.

    My mum and dad live together - she is 70 and he is 78 and has Alzheimers. Not sure exactly when he was formally diagnosed but he's been showing signs of cognitive impairment for some years. I live a couple of hours drive away, and my brother (who is in total denial that there is a problem) lives in south east Asia. It's not that I don't want to help, but living at distance is not ideal, and there is the added complication of my own emotions as I see my Dad becoming more unwell, which clouds my ability to be helpful. My parents are lucky to have many good, long standing friends, but their friends are as equally old as they are and dealing with their own health challenges.

    My dad is still independent with his personal care and my mum has always looked after household chores and meals etc, so they do not require social care intervention. The difficulty is with the practical and emotional side of things, and with my mum's transition to becoming a carer.

    I'm trying to find ways which I can get my mum some support - and in a way she will accept. I don't think she yet identifies as a carer, and attending dementia specific groups would totally depress my dad and lead to more problems, so I'm a bit lost as to what to suggest.

    It feels like she needs someone she can chat to who is completely non-judgmental and understands what she needs, and who would be able to fill the gap my dad is leaving in terms of practical coordination of their daily lives e.g. driving her to and from her own hospital appointments. I feel I am describing something like a "professional friend" - someone who understands what she's going through and can provide adaptable support, but who can remain emotionally detached. Someone who can help her through this transition into becoming a carer. Most support seems to be for people who are much further along the journey. I just don't know what to suggest to her which can help. Ironically, I used to be a social worker and wrote my dissertation on 'older spousal caring relationships' so you'd think I ought to be able to know what to do!

    Does anyone have any suggestions which I could follow up? Thank you for taking the time to read this - I know it's long and if you've reached this far down then I'm very grateful to you.
  2. HUG

    HUG Registered User

    Nov 28, 2015
    Hi Emm-t77

    On the early stages we used and in some cases still turn to:

    AGE UK - filling in forms (attendance allowance)

    Carers UK - very good for finding a "buddy" service, one day information courses, carers emergency card

    Carers direct - can help with caring role

    Alzheimers uk/society - Singing for the Brain groups and Alzheimers cafe - these are great fun in the early stages as you go together and meet people who understand.

    Doctors/district nurses: These lead onto all the professionals eg to get all the equipment you might need to borrow now and in the future.

    Council - disabled badge for parking, a key for disable toilets etc. And carers assessment (this form will show what you are doing and in return it will open of the care support on offer)

    Community transport - you have to pay for this service but they get you to appointments and back.

    Hope the above helps.

    Sent from my iPad using Talking Point
  3. em_t77

    em_t77 Registered User

    Nov 15, 2016

    Thank you, HUG. Thanks for taking the time to list how different agencies can help even early on.
    I wasn't sure if the Carers' organisations would be interested when it's still kind of early days, but I think I'll get in touch to explore what they offer in my parents locality, and then have a chat with my mum about what she thinks might be helpful.

  4. HUG

    HUG Registered User

    Nov 28, 2015

    Just a thought make sure you have power of attorney for both health and finance.

    My mum suddenly forgot how to sign her name this created many areas of difficulty.

    Having these documents signed and in place not necessarily registered early on gives menace piece of mind. The health one will grow in importance but the first time was just signing the forms and having a say in my mum's dental work!

    I'm trying to give experience that I have found going through the stages but I would say some of the stages are quick and when you notice a change just a couple of times but it seems to disappear (I call them dips) try to act ahead as all these services take time to implement before the 'dip' becomes the norm.


    Sent from my iPad using Talking Point
  5. Trisha4

    Trisha4 Registered User

    Jan 16, 2014
    Hi Emm. There are some helpful things you can do in the early stages. Definitely Power of Attorney. We did that even before my husband's diagnosis. Be aware of attendance allowance even though you might think it's too early. Once your Dad had AA it will reduce their council tax too.
    The most useful contact we had was from the Alzheimer's society. I also went on a CRiSP course at the early stage. It is run by the Alzheimer's society for carers and i found it really helpful. At that stage I was still Mick's wife; I am now his carer and feel in a very different role. Your Mum will benefit from support as that transition takes place.
    A couple of carers I know have recently employed personal assistants which sounds more like the support your Mum needs now. Again they were helped by the Alzheimer's society. There are also carers' associations which hold meetings and provide practical advice. You can probably find those through your local council.
    Alzheimer's sufferers are not entitled to disabled parking unless there is physical disablement which there isn't in my husband's case. You can however buy the key for disabled toilets from places like Amazon.
    I think getting as much in place as possible makes the journey easier as things get harder.
    I wish you all well and keep posting. You'll always find support, understanding and advice on here.

    Sent from my iPad using Talking Point

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