I care for mum and dad both with dementia

Discussion in 'I care for a person with dementia' started by Jaff, Mar 28, 2016.

  1. Jaff

    Jaff Registered User

    Mar 28, 2016
    95
    Hi my name jaff. I am looking after my mum and dad. Mum with the start of dementia and Alzheimer's. Which she is being a handful and would like advice.... I live hour away from mum... she is house bound with lots of medical complaints... we have just lost my brother in January.. went in for a op. And compilation and he died. There is a inquest in May... this shocked. Mum and myself... my brother looked after dad. And I looked after mum.. now I have both.. dad got rushed in hospital on 8 match with sepisis. Dr told me he would not last the night.. dad has got vascular dementia. Which has gone worse.. he's not eating or drinking I go everyday. Morning mum. Afternoon dad. Which now I am tied.. and sad. Now I have mum ring ing me up in the middle of the night. To go and get her. She thinks in a park. A farm. Bus stop. Come and get me she says.. I try and talk her round and say that she is at home. And it's the middle of the night and the carers will be there at eight. Am I doing this right? I have had two phone call tonight. Frightened to go back to sleep... help any one.
     
  2. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Just saw your post now. How far away are you from your Mum and Dad? You must be out of your mind with worrying. If carers are with your mum tonight, she will be ok. Is the hospital far from you. Do you have a friend who could help you now?

    You will get support on T.P.

    Aisling
     
  3. Jaff

    Jaff Registered User

    Mar 28, 2016
    95
    Aisling. Thank you for your reply. Yes to both mum and dad our a long away. Well to me because I can not drive mum in her own house. While dad in hospital they are looking for a nursing home for him. Dr have told it going to be hard now.. on public transport it takes me three hours for mum. And a extra half an hour to get to dad.... by car it's 40 mins.. I must of fallen asleep has not rang back as yet.. I don't know whether . Because she has lost her son... and I have told her about dad... that may be she has gone worse with her dementia..... I am on my own... and hoping for support. As I know soon I might lose dad... to soon after losing my brother. I can not stop crying.
     
  4. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    Jaff my heart is breaking reading your post. There is only so much that our body and mind can take. Can I suggest that you see your GP for yourself and phone social services who arranged for carer's for your Mum and let them know that your Mums needs have changed. You asked if you are doing things right. You are doing things way beyond what many would be able to do. There is no right or wrong where dementia is involved. I hope you get some support soon x
     
  5. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    So sorry to hear if your sad predicament. Firstly contact your local authority for a Carers assessment. They will come and assess yours and your mums needs including physical help with Carers being arranged as well as any equipment she may need, like bars to pull herself up etc, or bathroom aids.

    If your mum has been diagnosed with dementia has she applied for attendance allowance to help with expenses that are incurred. If possible arrange for this to be done ASAP as I know the rules are changing. If she is allowed this then you can apply for Carers allowance too if you earn below a certain amount etc. Your mums attendance allowance should be used to help with things like taxi fares for you to visit her etc.you can claim it on her behalf and get it paid into a joint account for you both so that you can put it to what is needed for her. Council tax reduction may also be allowed under the mental health incapacity she has, as well as she now lives alone too.

    In respect of your Dad maybe speak to Pals group within the hospital and they could put you in touch with someone to support you too, a Carers liason officer maybe in respect of your dad. I do agree that you need to speak to your GP and make it clear what you are going through and ask for support, even if it's a short course of anti depressants to help you cope. Also speak to your parents GP by email or phone to enlighten them about everything, and give them a few days to respond if you put a phone number to ring and discuss it with you, rather than visit them to save you time.

    I think Carers coming in will help you tremendously, and also if you can look into AIDS around the house like an alarm, to indicate if your mum leaves the house. Or a wrist alarm for safety, or CCTV so you can see what's going on without having to visit and worry until morning. Would you or your mum consider moving nearer to you or maybe into a care home to make it easier?

    I wish you luck and strength on this awful journey and welcome to TP where everyone understands totally.
     
  6. Jaff

    Jaff Registered User

    Mar 28, 2016
    95
    Worried

    I am with dad in hospital . He has started something new. He having fits. His right eye squeezed thight and the nerve under the eye jumps . Hes. Had about nine of these.. waiting for Dr. So so frightened. Nurses don't know what they are.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    9,869
    Female
    South coast
    Oh Jaff - what a horrible, impossible situation you are in.

    I honestly think that you should contact SS tomorrow and tell them the situation - what your mum is like, that your brother who looked after her has died and what your father is like now. I really do think that this is a crisis and you need emergency respite for your mum until you can sort out a sustainable plan. Please dont let them fob you off.
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I am so sad to hear your story Jaff, life is very hard for you at the moment x Would it be possible for you to stay over at your Mum's for a while just while you get more help - just thinking it might save you a lot of stress to be on the spot. I expect she is confused and sad and doesn't really know what is happening with your dad not being there and so on top of the dementia she is also very stressed. You must be too.
    keep posting, lots of support on here
     
  9. Jaff

    Jaff Registered User

    Mar 28, 2016
    95
    Worried sick

    Thank you the people who have answered me. It means a great deal. Everything you say right.... mum does have carers coming in four times. A day. She has aides to help her problem now is her hands are that bad she can not hold anything Dr already gave her painkillers and gel to rub on hands.... what it is with mum she upset I can not be with her all day... at the moment. Dad needs me... Dr came this afternoon they don't know what's causing these fits. If I had not been there the staff would have missed it.. not eating not drinking very sleepy. Would not talk... Dad going for test tomorrow . So here's hoping they find out what's wrong.. tried explain ing to mum. She understands. But pulling the emotion blackmail on me... did not want to leave dad but Dr told me to go home and rest.... how can I this is so hard.
     
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    Hi Jaff
    so tough on you at the moment being torn in two
    you're doing an amazing job looking out for your dad - the staff are right though, you need to rest and look after yourself too - I know, easy for me to say!!

    I'm glad your mum has carers supporting her - may I gently suggest you keep your updates for her pretty basic - maybe not explaining too much will help her be calmer; she can't, sadly, make a difference to your dad's situation, however having her calmer may help you cope - sorry if that's no help
    I do wonder, with others, whether having her safe in some emergency respite may help her, as she'd have company and carers around all the time - and it may help you, knowing that she is being looked after

    I hope you get some rest tonight
    very best wishes to all 3 of you
     
  11. Jaff

    Jaff Registered User

    Mar 28, 2016
    95
    A very tired jaff

    Would like to thank you for your support...and I will do my best tomorrow. When I put my head down that's it everything goes through your mind. Saying to yourself I should have done this and then that. I am so scared I don't want to lose dad just after i have lost my brother which was a great shock. He just went for a o. P on his fingers. And died ten min... then kept alive on machines to be told he was brain dead. Have had a lot of trouble with his wife and two sons. Who will not talk to mum and I..... I really have done nothing wrong and mum and I get treaded like this.... I don't know where his ashes are........ I say to my self what esle is going to go wrong.....
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,869
    Female
    South coast
    I know what its like to have everything going round and round your head when you are trying to sleep
    You are simply exhausted and maybe close to breaking point
    Please contact SS tomorrow
    xx
     
  13. Jaff

    Jaff Registered User

    Mar 28, 2016
    95
    Help

    Dr has told me they can not do anything for dad. Even thou he has not eaten or drank anything for three weeks. He took bad over Easter. And had seizures. Dr helped over that. And took me in a room to say this is it. He's nearing the end of his life.... have come everyday and he's still hankering on... said hello to me today then fell off to sleep.... is this what happened! Would not talk to any one yesterday when I asked how are you..... he said plain and clearly that he was fine...... he had not spoken for four days..... then slept... Dad has not spoken to any one else... is this normal... for a dementia . Nearing there end. I just don't believe it.. because they can not do anything for him... they are now looking for a nursing home.... I am scared. Has this happened to any one else.... tried talking to him he just looks away. Which is heartbreaking... has anyone got through this. He looks so peaceful Dad fast asleep you would not think anything wrong
     
  14. SEY

    SEY Registered User

    Mar 31, 2016
    18
    Wales
    I don't have any advice Jaff, but I do feel for you and am sending hugs x
     
  15. looviloo

    looviloo Registered User

    May 3, 2015
    464
    Female
    Cheshire
    Jaff, I just wanted to say that we're all here for you - please keep posting. It's such a difficult and upsetting situation you're in and you'll need your strength and courage to get through it. Just take one day at a time if you can. x
     
  16. canary

    canary Registered User

    Feb 25, 2014
    9,869
    Female
    South coast
    I am so sorry Jaff.
    I think this is what happens at the end of dementia. My FIL (Vas dem) was just like that and Im sorry to say that sometimes it can take a while. The waiting was awful.
    (((hugs))))
     
  17. jknight

    jknight Registered User

    Oct 23, 2015
    786
    Hampshire
    Thinking of you, Jaff. I haven't yet been through this with dementia but I was with my dad through cancer. ((((Hugs))))
     
  18. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    Jaff I admire you greatly and sure your parents would be proud of everything you are doing.

    May I suggest you intact your local hospice service and ask for their advice and assistance. A GP or social worker can refer you but you can phone up and ask them for advice. I suggest a hospice rather than a nursing home as it's now palliative care your dad needs in his last days or weeks with kind people who understand things, whereas a nursing home is a bit of a different place with more busy people, residents etc buzzing about which your Dad won't need. Ask his GP for help and ask him to sort out emergency care for your mum so you can contrite on your dad without the worry of your mum.

    Good luck
     
  19. Jaff

    Jaff Registered User

    Mar 28, 2016
    95
    What else can go wrong.

    Well on Saturday. Sat ten hours in a. E. With mum...... chest infection. Very confused talking in her sleep. Did not know what was going on...... I had a very nice ambulance drivers. Who took me. To the same place as dad..... safe me going to two hospitals....... during the wait for test results and x Ray... I got that talk again......... your mum very sick and has only got 40 chance of pulling through......... oh no I say not this.... I was in a right mess Sunday.......... well she pulled through. She can not remember anything... and today has moved to a dementia ward... has she responding slow to treatment.... .... update on dad. Waiting for social worker... to come and talk to me... he seemed a lot brighter today..... I just can not believe what the Dr. About this end of life.... but if he does not eat....! He complained about back hurting told the nurse would not take tablets... just threw them.... oh how my head hurts..... I don't want to... but going to take tomorrow off and rest.... I don't know how much I can take...... the ward mum is in is lovely........going to put my head down now.... what esle is going to go wrong......
     
  20. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    oh my days Jaff
    I really hope you are sleeping right now, you must be exhausted mentally and physically

    At least you think the ward is lovely so you were able to leave mum there with a fairly easy mind

    blankets of sympathy for you all
     

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