1. Michael1940

    Michael1940 Registered User

    Jun 17, 2016
    Hello. I am the daughter of parents living with Alzheimer's. My mum has the illness, my dad is her sole carer. My sister lives nearby - I, unfortunately, live at the other end of the country. I signed dad up to the forum hoping it would help him but he is a very proud man who doesn't want to admit that it's tough - although he is very stressed and tired. So, I am posting on his behalf.
    Recently, after a visit down south, my mum has deteriorated at a rapid rate. She has become infirm, is having hallucinations and delusions, sun downing, crying, and totally unable to express herself with words ( except occasionally). She has been assessed and is having a carer for 1 hour, 3 times a week - to help with bathing and dressing. Respite/day care is also available. I see this as something of a necessity if my dad is going to continue to cope. He needs some respite. But he feels that letting her go to day care would be abandoning her and the whole idea makes him cry.
    He says it is his duty to care for her as long as he can - but my sister and I are worried that the stress is going to kill him. Does anyone have any advice about how I can help my dad to gently let go and accept help?
    Thank you so much. Cath .
  2. marionq

    marionq Registered User

    Apr 24, 2013
    Have you or your Dad been along to the daycare to see what goes on? I am delighted with all three of the centres my husband has attended over the last year. It is good for him to socialise, to be praised and encouraged by others, to be entertained, to eat lunch and drink tea in company other than mine. I get a break to go to my own appointments, to swim, to shop, to maintain our house in good order.

    It may well be that your Dad is afraid of losing his sense of purpose. Suggest he goes along to the day care with her and sits for a little while or calls in early so he can observe how she is.

    I just wish I had taken up a place for my husband earlier than I did.

    Good wishes.
  3. Dave66

    Dave66 Registered User

    Sep 13, 2014
    Hi Cath

    Welcome to TP, the very best place for help, advice and support.

    My Dad was totally opposed to any sort of help for him and Mam(who has AD) and he still is in a way, but we're getting there day by day.

    Mam now has a Sitter one day a week so Dad can have a few hours off, it nowhere near enough of a break for him, but I'm hoping to get it increased to two days per week.

    One approach you could take with your Dad is to tell him that if he doesn't start getting time off, he definitely wont be able to look after Mum if he ends up ill or in hospital, so let's try and avoid that, by getting some rest time now.

    Has your Mum been tested for UTI? I understand this can cause hallucinations.
    Does your Mum take any anti depressants?
    My Mam was up 6-8 times every night, we got her anti depressant changed to Mirtazapine, now she can be up once or twice or sleep for 8 hours flat.

    Good luck to you and your parents, you have done the right thing by coming on here sharing your story and seeking advice.
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Cath
    I sympathise - my dad looked after my mum when she had a stroke and he too saw it as his duty to do everything

    I'd use every emotional trick in the book - as Dave66 says, tell him that if he sees this as his duty, he'd better make sure he looks after himself as he'll be no good to man nor beast if he suffers from exhaustion, so he wouldn't be doing his duty!
    maybe praise him for organising the carers, so he feels he's done a good thing there, and getting more carers more often would be even better
    my dad would do anything for me, might he accept some respite because you are so worried about him and you don't want to see him so tired and worn down, you want your old dad back- type of thing?
    marionq's idea is good - could they go along to a day care centre together and have a morning there? then he can see how the carers will look after her and that others make use of the facilities so why shouldn't he and his wife
    let him know you would never think that he's abandoning your mum, but caring for someone all day every day is more than a one man job - at work we get weekends and holidays; so having a team around him to help is only in his wife's best interests
    maybe say his accepting more help would stop you feeling so guilty (a fib) because you can't help out very much as you are so far away, so it would make you feel better

    I hope he has gained Attendance Allowance for your mum - maybe point out that most people spend that on the day care so it's not coming out of income - and has he had a carer's assessment from the LA Adult Services? it may be that there's some free respite on offer, and he wouldn't want to turn down a freebie (?)

    just some thoughts - feel free to ignore :)
  5. grove

    grove Registered User

    Aug 24, 2010
    North Yorkshire
    #5 grove, Jun 21, 2016
    Last edited: Jun 21, 2016
    Hello & My Sympathy

    Cath as I can fully understand your worries & concern etc for your Father's well being etc ( my Dad was diagnosed with mixed dementia in 2009 :() & my Mum is very much like your Dad wanting too do ALL the caring herself etc & like you am worried :( about her health & well being & in fact am worried she is showing small signs of Carer breakdown :( > sorry taking over your Thread ! > (Am a back ground Carer for a long time supporting them both & guess am lucky as we live in the same area So can see a change in Mum some days)

    Agree with Marion suggest a Visit / Trial too the Day Centre ? with or with out your Mum ( even if it is just half a day or less it might help your Dad see the day too day routine etc , etc & meet the Staff :) etc & also why not think of flexible :) Caring ? > A day at the Centre & 1 or 2 days at Home with a *Carer Sitter* ? Sorry if that is not suitable etc
    ( only suggested it as an idea for your Dad so he can have less worry etc about his Wife being away from Home at the Centre all the time etc

    Also do you think your Dad might be guilty of *handing* over the Care too some body else ? I know from reading on here a lot of TP'ers do feel guilty etc Plus another point my very good friend said too me ( was explaining too her about Mum's problem of not wanting too let go etc ) & my friend made made a very valid point > that Mum might be very fearful :( about letting Dad be cared for by some body else etc & that had never crossed my mind until S explained it too me & too me it makes perfect sense ! Just too add my friend used too work with the Elderly Care team assisting the S Workers plus is also a full time Carer for her Mum So she has lots of experience etc as you can gather ( sorry for the ramble ! )

    Do hope the above helps :) & agree fully with the other members if you impressed on your Dad he has too have some free time etc & his own Well being is very important etc & you do not want him too be poorly He might ( hopefully) understand etc & start too *Share the Care*

    Good Luck & Best Wishes too you all Thinking of you & your Dad & hope it all starts too work out well as it can do for you all (these things are never easy too resolve some times )

    Love & Kind thoughts

    EDIT > Sorry meant too say a Big Welcome from me too TP & hope you find it as supportive & friendly as I do x

    Grove x
  6. Dayperson

    Dayperson Registered User

    Feb 18, 2015
    I can see my dad is in denial and I think he won't accept help. He tells me mum isn't too bad at the moment and wants to sleep downstairs or in the spare room once we remove the boxes in it.

    It's affected us both that we can't sleep and think straight.

    Is everyone entitled to home help regardless of income and amount in savings?

    Dad seems to think he can care for mum forever and I have decided to sacrifice my life to look after her. I am really put off wanting to bring a child into the world with such a high risk of dementia (mum, grandad and aunt and great aunt has / had it) and other illnesses in my family and to suffer the same way I have.

    I'm worried dad may do something rash which may put mum at harm.
  7. grove

    grove Registered User

    Aug 24, 2010
    North Yorkshire
    Morning Day Person

    Sorry for all your problems etc & sorry am not able too give advice on the Home help question & also Please NOTE it would be better if you can start your OWN Thread please as this is another Thread for another member & you will not get many reply's on this Thread Thank you & good luck & hope things improve soon for you all

    Love & Kind thoughts

    Grove x
  8. Dave66

    Dave66 Registered User

    Sep 13, 2014
    Hi Dayperson

    I think denial does play a big part initially, then there's pride, suspicion, stubbornness a whole host of emotions and personality traits. One thing is for sure, no one person can live a life and care for someone 24 hours a day.

    You need to explain to your Dad that you all need external help looking after your Mum, because if you become ill, who will look after her then?

    Personally, I think the sooner people accept help, the better it is for everyone concerned. The person with dementia, get's to have new "friends" in their life while they can still enjoy a quality of life. The Carer get's some rest and time to develop trust in Carers and new "friends" and the extended family are relieved of some of the worry and stress regarding their parents.

    As far as I'm aware, everyone is allowed some Caring hours per hour, how many would depend on how your Mum is, what needs she has. Your Dad can have something like a Sitter Service, so he can get a break for a few hours once or twice per week. There are day centres where your Mum & Dad could go, or just your Mum once your Dad is happy she is safe and happy there.

    There are a lot of different organisations and agencies out there who can help with all aspects of your Mum & Dad's life, your Dad doesn't have to struggle and get stressed out unnecessarily.

    Does your Mum get Attendance Allowance? If not, claim for it ASAP, this money can help finance extra care hours if required.
    Once your Mum has received AA, you should claim for Carers Allowance if you are earning less than £110.
    Do you have POA for your Mum? If not, get that done ASAP.

    Does your Mum have a Social Worker?
    Has she had a visit from Occupational Therapy?
    These will assess if there's anything that needs doing in the home to make life a bit easier for your Mum & Dad, simple things like hand rails, a bath seat, steps.

    I hope you can convince your Dad sooner rather than later that it is in his best interests now, to get help with your Mum, it will only lead to stress and crisis in the future if he doesn't.

    Perhaps you could try letting your Dad read some of the stories on here, show him what other Carers and families are going through and how they are dealing with it. This may make him realise that he needs a different, open and positive approach towards your Mum's care and his mental and physical help, because it will be affected at some point and there really is no need for him to suffer like that.
  9. Michael1940

    Michael1940 Registered User

    Jun 17, 2016
    Thanks so much

    I cannot tell you all how much I appreciate you taking the time to reply to my question - and in such detail too. After using a combination of the ideas suggested - my dad has agreed to give it a go!! He will go with her to have a look at what's going on first of all - and then we'll make a plan about which days he'd like her to attend.

    Once again, a huge thank you.

    Cath x
  10. Dave66

    Dave66 Registered User

    Sep 13, 2014
    Hi Cath

    That is excellent news Cath, a very positive attitude from your Dad, good for him.

    I hope your Mum enjoys her days out and your Dad get's to have some rest and time to himself for himself. Hopefully it will also act to reassure your Dad that there is good help and assistance out there for them.

    Good luck and best wishes to you all.

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