Having a Bit of a Crisis

Discussion in 'I have a partner with dementia' started by NORTHSIDE, Dec 14, 2018.

  1. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hi @Alex54
    here's a link re PIP
    https://www.gov.uk/pip
    it specifically states

     
  2. Alex54

    Alex54 Registered User

    Oct 15, 2018
    149
    Male
    Newtown, Wales
    It is also worthwhile getting a urine sample to the doctors.
     
  3. NORTHSIDE

    NORTHSIDE Registered User

    Jan 28, 2017
    80
    Male
    Northumberland
    Hi, the PIP is for dementia. My wife physically is very fit and has no problems.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    It sounds like she is forgetting what she has to do. Have you tried very small step by step instructions or even helping her?
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,181
    I am not sure even respite is the answer to this situation. I know she is relatively young but so are a lot of residents in care now. Yes, speak to the GP and try again with social services. Although self-funding, when I reached breakdown a social worker helped me so much and found my husband his nursing home place. It was obvious I was in no condition to do it or to carry on.
    This situation is torment for you. It does not have to go on. I thought I could see things through with my husband but it broke me and he is very happy in his nursing home (see my thread don't throw me away .. breaking my promise). All the torments you describe and many more I went through because I could see no option. Please don't go on suffering like this. warmest, Kindred.
     
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,487
    I agree with @kindred

    It has all become too much for you and it doesn't need to be like this. You have done your bit and you deserve a bit of life. This could go on for years. Please think about something permanent or it will break you. So sorry it has turned out this way for you but you are bearing to much.
     
  7. NORTHSIDE

    NORTHSIDE Registered User

    Jan 28, 2017
    80
    Male
    Northumberland
    The problem is once she decides not to do something then there is no changing her mind. I can take her to the bathroom show her the toilet then she will just refuse. Sometimes she will even take her .......wouldn't you know, just as I was typing that she says she wants to go to the toilet, so I've just taken her along, put the light on opened the door pointed out the toilet, she goes in takes her pants down and pulls them back up again without going. She then adamantly refuses to try again. If I tried to help further she would just push me away. No doubt she'll ask to go again in 10 minutes or so.
     
  8. NORTHSIDE

    NORTHSIDE Registered User

    Jan 28, 2017
    80
    Male
    Northumberland
    Thanks for your reply, and you Duggies girl, I know what you say is right, I am 63 and luckily have no health problems and there are so many things I still want to do and places I would like to go. but I keep thinking what would I want if the roles were reversed, I'm sure I would be happier in my own home. I realise though that i cannot go on like this and I will take your advice and contact the GP and Social Service, and the local Carers group. Thank you for your good wishes, Happy Christmas to you all.
     
  9. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,487
    Oh @NORTHSIDE What would you want if the roles were reversed.

    I am sure you would want your wife to enjoy the rest of her life as well as she could. I am sure that you would not want her suffering the daily anxiety that you are. Would she have wanted you to end up living this very stressful life.

    Whatever you decide please don't feel guilty.

    A happy Christmas to you to.
     
  10. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,510
    Female
    We all think that, but there comes a point when it is no longer true. This time last year I was making the decision to move my mother to a care home. I knew it was the best thing for her but it took me a couple of months to get my head round it and make the arrangements, it seemed such a drastic thing to move her out of a home she'd been in for over 40 years. But actually she loves the care home and is really happy - far happier than she was in her own home a year ago, because she is surrounded by staff who can help and reassure her 24/7, and it has genuinely become her home.
     
  11. Alex54

    Alex54 Registered User

    Oct 15, 2018
    149
    Male
    Newtown, Wales
    My advice would be not to make a big fuss about the toilet. I take my wife about twenty times a day, most unsuccessful. Does it really matter if she uses the toilet or not - things will change over time.

    It is too easy to get fixated on a particular issue rather than looking at the wider picture.
    The important point is to keep your relationship together - just accept you are going to have bad times when everything seems worse.

    The memory clinic prescribed Lorazaparm for my wife, it worked for a few weeks then it seemed to have no affect, so we stopped using it. Now when my wife has a difficult period we use the Lorazaparm and it works - my GP calls it the reset pill.
     
  12. NORTHSIDE

    NORTHSIDE Registered User

    Jan 28, 2017
    80
    Male
    Northumberland
    Hi Sirena, thanks for your reply. I take your point, it is inevitable, I suppose it's all about timing, I don't know how old your Mum was, my wife has just turned 60. I don't think she would be happier in a home as yet. I really feel if I could get a week or so to myself every now and then to recharge then we could go on a little longer. In any event I'll make some enquiries as people have advised and see what is available, Cheers
     
  13. Alex54

    Alex54 Registered User

    Oct 15, 2018
    149
    Male
    Newtown, Wales
    It took me a while to understand what our support worker meant when he said her age (67 years) was against her. I now understand that the younger the person, the more likely the illness will accelerate.

    One of the problems we found was that the day centres, meeting groups and nursing homes are geared towards much older people. In the end we stopped using them as they were just not right for us. So we stay in the house nearly all the time - it is easier than going out.
     
  14. nita

    nita Registered User

    Dec 30, 2011
    1,797
    Female
    Essex
    I don't know if a "sitting" service by a care agency would be appropriate for your wife? There was a service which I was referred to by the GP giving you 30 hours' respite a year in the form of someone coming and sitting with my mother for a few hours so I could get out. It was a free service, not means tested and I used it occasionally.

    I see you live in Northumberland and I wondered if these links might help you, if you haven't seen them already:-

    http://www.carersnorthumberland.org.uk/

    I also found this site for young onset dementia care in the north-east:-
    https://www.youngdementiauk.org/north-east

    https://www.nhs.uk/conditions/socia...its-for-carers/carer-breaks-and-respite-care/
     
  15. NORTHSIDE

    NORTHSIDE Registered User

    Jan 28, 2017
    80
    Male
    Northumberland
    Hi Nita, thanks for that. I was aware of these organisations, I've attended a couple of things at Carers Northumberland including a one day session on caring for someone with dementia. They have monthly advice drop ins but the timing is wrong for me, but they do have a helpline I can call. Likewise the young dementia centredctale somesgetting too. I'm going to have to make some calls. Thanks for your response
     
  16. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    392
    I understand your reluctance about full time care. I have started to think about that but the cost for somebody with young onset who is physically fit is quite terrifying- even if you find somewhere that will take them. It would take everything we have and leave me with nothing for my own old age.
     
  17. NORTHSIDE

    NORTHSIDE Registered User

    Jan 28, 2017
    80
    Male
    Northumberland
    Hi, The finances are another issue completely, I suppose I need to see what options are available and what they would cost. But initially it's deciding what would be in the best interests of both myself and my wife and then see what can be afforded. To be honest as my wife is only 60 predicting how long I would need to budget for is like predicting the length of a piece of string.
     
  18. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    392
    Exactly - my OH is 62 - I would definitely have voted for May's (indeed anyone's) attempt to set a limit to the total lifetime costs of care. People who were horrified at the limit proposed had no idea of the actual costs.
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    When looking at care costs it is only the PWDs assets that count, you shouldnt have to pay anything at all. Im hoping to start day care for my OH after Christmas - he wouldnt go earlier this year, but he had assessments and everything, so I know how it works. If he had savings (thats savings in accounts with only his name, or half of joint accounts) that amount to more than £25,000 then you would be self-funding. If/when the savings dip under this amount then the Local Authority will start contributing and you will only pay a portion. The house is disregarded while you are living in it.

    What you have to do is contact Social Services who will advise on what care they think is available for him - you can ask for what you think might help - and after this is agreed there will be a financial assessment and they will tell you how much you would need to pay.

    You shouldnt have to run down your savings so that there is nothing left for you
     
  20. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    392
    Thank you. What I am worried about is that our savings are 50/50 and if he always has ‘half’ then eventually my half will be eroded. That may not make sense! I am not good at explaining......But I will go and get advice soon since he is about to inherit something from his mum and presumably that won’t be shared . I do have lpoa
     

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