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.

  1. jellymac

    jellymac Registered User

    Nov 29, 2014
    63
    West Midlands
    Hi

    This is my 1st post. My mom is 69 and was diagnosed with AD 4 years ago, there has been a steady gradual decline until about 6 months ago when she seems to have deteriorated very rapidly. She can no longer wash, dress and the last couple of weeks shes had a few toilet accidents. Her memory is very bad, she still recognises my dad,sister,brother and myself but has problems remembering the grandchildren and other familiy members. Shes crying and getting very anxious on and off all day every day, she is on medication for this but they dont seem to be having any effect. My dad is her main carer and although he is doing an excellent job he wont accept any help at all. He is finding it very hard with the emotional side at the moment, my moms constant crying and following him everywhere is really getting to him. I speak to him at least once everyday and visit 3-4 days a week, i work part time and have 2 small children but feel guilty about not helping enough. We are very lucky in that we are a very close family. Has anyone got any advice on how we can support our dad more? Thank you very much
     
  2. MeganCat

    MeganCat Registered User

    Jan 29, 2013
    356
    South Wales
    Would your dad entertain the idea of your mum going to day care to give him a break now and again? To recharge his batteries. Has he had a social care assessment?
     
  3. jellymac

    jellymac Registered User

    Nov 29, 2014
    63
    West Midlands
    Thank you for your reply. We have tried to suggest it to my dad but at the moment he wont, he is very old fashioned in his views and thinks its his job as her husband to look after her himself, he feels like he would be a failure if he accepted any kind of help. Also they have been married 48 years next month, they have never had their own friends or interests they've done everything together, I dont think my dad would cope very well without her there, even for a day.
     
  4. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,126
    eastern USA
    Perhaps an in-home carer might come in two days a week, to help your mother with her own things - clothes laundering, bathing, whatever. The carer can be introduced as a "new friend" who is there to keep her company. Once the "friendship" time developed into trust, then maybe your dad would let go a bit. I'm sorry. Your father could end up becoming sick from so much stress, and then he would need help, too. We conceive that my mother's first stroke probably occurred when she was under stress caring for my father, whose vascular dementia took him in a short period of time. I hope things calm down there for you. Try to get some home help maybe, just to see what happens. (My father would have been the same way about my mother, by the way, but he left us first.)
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,716
    Female
    London
    There is lots of help out there but if your dad doesn't want it, there is probably little you can do. What you could suggest though is that they contact their local AS team for practical help with form filling (Attendance Allowance, Carers Allowance etc if they haven't done that yet) and to gain access to their social activities like coffee clubs and Singing for the Brain. This is something they can do together and the AS team could give your dad gentle moral support. In our area they also do 5 week dementia courses called CRISP which might be useful for your dad to attend. I think it's really important for carers not to isolate themselves. Would your dad come here to Talking Point?
     
  6. jellymac

    jellymac Registered User

    Nov 29, 2014
    63
    West Midlands
    Thank you both for your replies. We have suggested each of these things to him but again no luck, I guess at the moment we just need to have all the info of help available to give him if he changes his mind. Im sure there is something as well that if he asks for help hes got to admit how bad shes got. CJinUSA we are very worried about his health as well, he has prostate cancer, its slow growing and at the moment he doesn't have any treatment just blood tests every 6 months but theres alawys the worry that could change. I think we are all really struggling at the moment emotionally, my mom has changed so much in the last couple months we are to devastated to deal with it. Its just such a horrific journey isnt it
     
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    If you request a carers assessment they may be able to persuade him that some help would be a good thing and it is also free help for a few hours a week. He can even stay around but it will take the pressure off a bit. If you can get a professional through they door it may be that because they are outside the family they can persuade him that he is really important to your Mum and that he must look after himself a little more and a break would help.

    We found that once my Ma had a little help (and it took a really long time to get through the door) then she was more open to having more help

    just a thought but I expect you have tried everything. Good luck thinking of you all x
     
  8. Sylviamaud

    Sylviamaud Registered User

    Jan 10, 2015
    1
    NHS continuing care advice

    My sister aged 59 is currently in hospital having recovered from a stroke, has been diagnosed with early onset dementia and lung cancer and requires 24 hour care. She has been turned down twice for NHS continuing care. Has anyone out there received NHS Continuing Care (CC) for someone with these symptoms?

    Apparently, her needs are not intensive or complex enough !!!
    Any advice would be appreciated.
     
  9. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,126
    eastern USA
    To make sure people respond to *your* particular concerns, you might want to start your own thread, so that people will respond to you directly, the way we are responding to the original poster's concerns. I'm sure lots of folks here would be able to talk with you about your concerns on your own thread.
     
  10. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,126
    eastern USA
    One way to handle this, especially in light of your father's prostate cancer is to try to go to his doctor *with* him and talk with the doctor, either with him in the room or without him, about your concerns about the overload on your father, because of your mother. I think getting your family involved with your father's care might help the doctors see the load he is attempting to carry by himself. One key thing, which I think someone else said, is that your father might think if he asks for help, then it really means he's going to have to say goodbye to the woman he loved in the way he loved her. That is hard for anyone at any age.
     
  11. jellymac

    jellymac Registered User

    Nov 29, 2014
    63
    West Midlands
    Thank you again everyone for your replies, I really appreciate it. CJinUSA your exactly right hes too scared of loosing who she is, I know he thinks if he doesn't admit then she wont get worse. He admitted to me once that if he tells people exactly how she is they will make him put her in a home, we've tried to tell him it wont but he is scared. One thing ive found out my aunt (my moms sister) has found a group next week at their local hospital for all people with dementia and their carers, shes told him that they are going and she'll take them. Hes not happy but has agreed to go, hopefully when he gets to speak to other carers in the same position that will help, I think maybe we need to be more assertive with him.
     
  12. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,126
    eastern USA
    The difficulty in dealing with a parent is that we are used to taking their orders and doing what they want. But we can't do that any longer, when they are no longer making good decisions for themselves. Your dad could easily go before your mother if he doesn't get some help. My OH's mother ended up having a heart attack and a stroke when she was trying to care for her husband without telling her kids (he had vascular dementia and was just unbelievably difficult to handle). Sometimes taking a firmer hand with the situation can build trust rather than rejection. It's a delicate thing, but it can be done. We now in my family all joke that I am "big mamma" and my mother is the "little mamma," because I was the one willing to take control of her care. Some one among you needs to take on more of a parental role. It's not always welcomed, but it will be welcomed in the end - or, that is how it worked out here . . . .
     
  13. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    #13 CollegeGirl, Jan 11, 2015
    Last edited: Jan 11, 2015
    Hello Jellymac and welcome. Your post resonated so much with me because apart from the fact that my two children are not young like yours, it could have been me writing your post. You are in the position I was in a couple of years ago.

    There was absolutely nothing I could do except support my dad as much as possible, until he was ready to accept help from outsiders. This time did eventually come as things gradually became worse and he finally realised that he just couldn't manage alone any more.

    I can't even remember now how it came about, but to cut a very long story short, and glossing over all the details, mam now has carers for five mornings a week and twice a week on an evening. She also goes to day care at a local nursing home twice a week to give dad a break and allow him to do things that are impossible when she's at home. They also have some domestic help with the housework which is a bonus. She is also now on a very low dose of antipsychotics (because of her violent and aggressive behaviour), which is something dad was always vehemently against, until eventually, after seemingly every other medication possibility and combination had been tried in vain, he very reluctantly allowed it. Something I thought he would never, ever do.

    I hope this reassures you even in a small way that it's likely that eventually your dad will accept outside help. It may, unfortunately, be triggered by some sort of crisis - perhaps if he has a period of illness making it impossible for him to care for your mom - followed by an acceptance, albeit reluctantly, that he can't do it alone.

    I wish you all the best of luck, and yes, it's a truly horrible illness.

    Do keep posting.

    xx
     
  14. MeganCat

    MeganCat Registered User

    Jan 29, 2013
    356
    South Wales
    The big momma, little momma analogy just reminded me of my mum. I'd gone up north to visit and arranged for SS to come and discuss possible support (which she was very much against). With a bit of emotional blackmail I got her to accept that it would mean I'd worry less if I knew she had meals being delivered (this was first step, later we negotiated carers).
    She turned to me and sternly said "I'm the mother, you're the daughter!" :eek:
     
  15. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,296
    SW London
    I do think some people are afraid of involving social services - they are afraid of them interfering, or 'taking over' or prying into their private affairs. It might possibly help to explain that nowadays SS are very anxious to save money and are only too happy to let family get on with it if they can.

    Otherwise, it may just help to point out that if he becomes so exhausted that his own health fails, then she would have to go into a CH anyway - as happened in two cases I know of personally, where the husband would not accept any help.

    But I do know how hard it can be when someone's views are so entrenched that they stubbornly and persistently refuse any help. I do hope you will be able to persuade him. Could his GP perhaps tell him that it is necessary for his own sake? Sometimes people will listen when it comes from a GP rather than from family.
     
  16. jellymac

    jellymac Registered User

    Nov 29, 2014
    63
    West Midlands
    Thank you, it means a lot that you all can take time out to help. Its so nice to know that we are not alone. Witzend you're exactly right he is afraid to get SS involved in case they do "take over". It might be a good idea to get his GP to suggest something, he does listen to what he says. CollegeGirl thank you, we will keep our fingers crossed that he will. I'm going to either bring my mom to my house (where she always seems happy) a couple days a week or go to theirs and make my dad have a break, hopefully then he may realise its ok for my mom to be away from him for a little bit.
     
  17. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    #17 fizzie, Jan 12, 2015
    Last edited: Jan 12, 2015
    I looked after my Mum for 4.5 years until very recently. I do work for the CQC nd for social services but when it came to my own mum i was terrified that we would be forced to do something we didn't want to. How ridiculous is that. I nearly knocked myself out caring for her for so long my teenagers sacrificied a lot too but I was really frightened of a takeover bid.

    I understand where your dad is coming from perfectly. I would suggest really gentle persuasion and being very sure of where you are going before you lead him there. I wish you lots of luck and I hope all works out for you but just to reassure you that it isn't only the elderly who are wary of social services :). in the end i employed a private carer to help with personal care in the morning and 3 months before she died we had a carers assessment but they didn't come back to us lol so that was a waste of time. The Godsend for us was her lunchclub where they kept her on until 3 days before she died and she went almost every day. Social groups and lunch clubs are the way forward in my opinion they are a win win situation

     
  18. Isabella

    Isabella Registered User

    Jan 4, 2014
    106
    Me too! Whenever I do anything to help mum like brush her hair or sort out her shopping, she looks at me in amazement and says "You're very clever!" I think she's forgotten that I'm 35, not 12 :)
     
  19. Blossom64

    Blossom64 Registered User

    Jan 13, 2015
    9
    It took time for my dad to realise that he needed help - 6 months ago he had carers in AM but he didnt like the timings as didnt fit his routine so he cancelled them. We have just had social services help again and now we have a carer 7 days a week @ 10AM to get mum up, wash and dress her. Dad really appreciates this now as gives him time to get up and do a few chores etc with no disturbance. I think in time your dad will realise he needs help as last week when I told mine he should have continued with the previous carers he said 'well your mum wasnt as bad then' - Good luck x
     
  20. jellymac

    jellymac Registered User

    Nov 29, 2014
    63
    West Midlands
    Thank you Blossom64. We will keep our fingers crossed that our dad accepts help as well.
     

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