Only child, Mum has dementia, looking for someone to talk to

Discussion in 'I care for a person with dementia' started by Layla Pigeon, Apr 8, 2015.

  1. Layla Pigeon

    Layla Pigeon Registered User

    May 15, 2013
    14
    Essex, UK
    Hi
    I am an only child of 47 (gulp ! )

    Mum and Dad still with me although 100% Mum has early to middle stages dementia BUT refuses to go to doctors... Dad is coping but very proud and I am having a lot of problems getting him to accept any help.... you probably can fill in the blanks.

    Would really like to connect with people that are at the same stage as me and my family, either with or without diagnosis,
    Suppose looking for a kind of penpal through this great forum.
     
  2. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,485
    Female
    England
    Hi,

    Please use all the members on here. We can all offer advice and support and those who have experienced the same will tell you how they managed the problem or maybe how they could not manage it. Even hearing of a failure is good because you know you are not the only one who could not manage so you know you are not failing.

    You can have many, many pen pals on here so keep all your doors open and welcome everyone in.

    Keep plugging at Dad to accept some help, if he goes under through the pressure then there will be two people needing support. It is difficult when they won't accept help but keep trying as softly as you can, the last thing you want is to fall out with Dad.

    Take care,
     
  3. Tara62

    Tara62 Registered User

    Hello, Layla. I am also an only child, of 52. My mum died in 2010, after six very demented years (she was left with brain damage after an operation). I found this forum when I became concerned about my father's mental decline - he is 88. I'm not yet sure if my father has dementia or not; I'm just scared that it is all going to happen again, and he is (increasingly) hard work.

    This is a great forum. There are so many supportive and lovely people here. I wish I had known about this place when I was going through absolute hell with my mother. I am sure you will make friends and get lots of good advice here.
     
  4. velocity

    velocity Registered User

    Feb 18, 2013
    173
    North Notts
    Hi just saying welcome, I'm also an only child at 62!!! Originally from south east. My Mum has been diagnosed 1 year ago Alzheimer's type Dementia after 10 yrs of trying to gain help, but I got there in the end, after approx 8-10yrs of hell, she was given Donepezil which luckily has helped her (and us), I have read it doesn't suit everybody, she is calmer and less confused, less anxious but I can see memory loss advancing.
    So hi and best wishes
    pm anytime:)
     
  5. Layla Pigeon

    Layla Pigeon Registered User

    May 15, 2013
    14
    Essex, UK
    Thank you for your kind words x
     
  6. Layla Pigeon

    Layla Pigeon Registered User

    May 15, 2013
    14
    Essex, UK
    Thank you for your reply and please keep in touch x
     
  7. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    #7 Suzanna1969, Apr 8, 2015
    Last edited: Apr 8, 2015
    Hi Layla,

    Poor you, I can't imagine how difficult that must be. My Mum was diagnosed with vascular dementia a few years ago. We are fortunate in that she will accept our guidance, that Dad is accepting of her condition (he has vascular parkinsons himself) and that I have a wonderfully supportive brother. Even so it's incredibly upsetting so what you are going through I can't imagine.

    Way back when I first started noticing 'things' not being quite right with Mum I contacted her GP via email and voiced my concerns. As I didn't then have power of disclosure or whatever it's called I stressed that he didn't have to respond to me but that I'd really appreciate it if he could conduct a small test when we next went for a routine appointment without her knowing what it was actually for. He did so. My Dad was aware as well. Not sure if your GP would be prepared to do the same but it might be worth a try.

    I know it sounds awful but I got my parents to accept more help by emotional blackmail of sorts. Basically I said that it would set me mind at rest/make me feel better/stop me worrying if blah blah blah. My parents are very loving and always put me and my brother before themselves so, despite them also being very proud, their concern for us overrode their reluctance to see the doctor.

    I also found my local Age UK really helpful with advice, both practical (re benefits etc) and for moral support dealing with both parents.

    Just as an aside, my Dad was really reluctant to accept his Attendance Allowance (they both qualify) and felt that he shouldn't be entitled to it. I put The Jeremy Kyle Show on for him. He felt more entitled after that...

    There are ways and means!!!! You just have to find what works for you and your parents.

    Good luck hon. It's a journey none of us anticipated or wanted but help is out there and sometimes from unexpected quarters.
     
  8. Layla Pigeon

    Layla Pigeon Registered User

    May 15, 2013
    14
    Essex, UK
    Thank you for your reply and the opportunity to talk xxx
     
  9. Layla Pigeon

    Layla Pigeon Registered User

    May 15, 2013
    14
    Essex, UK
    #9 Layla Pigeon, Apr 8, 2015
    Last edited: Apr 8, 2015
    Oh wow a lot of what you have said has hit home/made me realise things - thank you xxx please keep in touch x
     
  10. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    Hi Layla

    It is not easy being an only child at a time like this. I am an only child and can empathise with most of what you say. Does your mum know she has it? My mum has Alzheimer’s and has been in total denial. It is a pity because if she had accepted she had it she could have been put on medication to slow the progression. I know other people who take this and their disease has progressed much slower than my mother’s. I think I am right in saying that it only works with Alzheimer’s and not with vascular dementia.

    I managed to speak to Mum’s GP about my concerns beforehand and get her along pretending it was about something else. If your mum is diagnosed she should get Attendance Allowance which may be useful to help pay for the inevitable extra costs that arise as the disease progresses. Also with a diagnosis you will get support from the Older People’s Mental Health Team.

    Give your father time. People who have been independent all their lives are often reluctant to accept help. Just be there for him and you may find he will be grateful for help in the future.
     
  11. Layla Pigeon

    Layla Pigeon Registered User

    May 15, 2013
    14
    Essex, UK
    #11 Layla Pigeon, Apr 8, 2015
    Last edited by a moderator: Apr 8, 2015
    Thanks for taking the time to reply, it hit home
    Mum WILL NOT go to the docs and I dont care who on here says I must get her there I CANT and SHE WILL NOT.... *crying*
    My Dad is my hero and he is falling apart...
    My Mum is my everything and she has gone......
     
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    And if you can't you can't. We can give you tips about what has worked for us, but that's all they are - tips. And the truth is, a diagnosis may not mean much: we all end up dealing with the symptoms. So don't beat yourself up over it. I never really got a diagnosis for my mother: sure she had had several strokes, she needed a lot of care, but diagnosis? Not so much.

    The only downside to not getting a diagnosis is that it might (not always) restrict your ability to get outside help. I did manage to get my mother full rate AA without an official diagnosis, but it might not always be possible. And as for getting the council tax reduction on the basis of mental impairment: you would have thought the GP was going to pay out of his own pocket. I got it in the end (in part due to this forum which I found at that time) but it required persistence.

    But please: if you can't get her to the doctor (but I will throw out the whole: get the doctor to call her for a "well older person check" - a lot of people will not refuse a doctor instigated visit) you can't get her to the doctor. And don't feel bad or that you have failed if you can't get her to go. There are an awful lot of people who never get a diagnosis.
     
  13. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Bless your heart, my Dad is my hero too. He remains stoical for our sakes but it is so hard on him especially with his own condition.

    Your Mum isn't totally gone but I know it seems like that. My Mum asked who I was a few weeks ago. It was a real shock, first time that's happened. But she hasn't been quite that bad since. She spends the first few hours of every day crying because she is scared of what is happening to her - she is still sufficiently aware to know what she is losing. It's beyond horrible yet I know that worse is to come. It breaks my heart because she was always so vibrant and outgoing, volunteering for all our school stuff, president of the local WI, knitting lovely blankets, hats and bootees for the local premature baby unit (no grandkids from either of us so she had to knit for someone!) and always chatting to anyone and everyone in Tesco doing the weekly shop.

    Layla I see you are in Essex like me. PM me if you need to talk.
     
  14. joggyb

    joggyb Registered User

    Dec 1, 2014
    119
    Another only child checking in with you! I'm 48, Dad was diagnosed around Easter last year with Alzheimer's, and has been in care since October. Between Easter and October was a period of pure hell and immense worry.

    With regard to your parents - if your mum won't go to the doctor (not even if you pretend it's for something else? Has sometimes worked for others), would it be possible to call the GP, explain the circumstances, and see if s/he will come out to you? Long shot, I know, but might be worth a try.

    I think all of us on here will relate to you grieving for the loss of your mum. BUT - you can decide to try to make the best of the situation and her condition. It's hard, but it can be done. Reading as much as you can about dementia is probably the best way to start. For me, Oliver Sacks' book, Contented Dementia, has proved a huge help in understanding how this horrible disease feels from the sufferer's perspective, and what you can do to help make sure their life can be as happy and content as possible. Even if you just take away from it the core principles, I think you'll find it very useful, and will hopefully enable you to have more 'quality time' with your mum.

    As for your dad, it's obviously important that he gets as much support as possible. You being there for him will help, but he may need external help, too. If he doesn't want to phone Social Services, or get them involved in any way yet, encourage him to speak to Age UK or the Alzheimer's Society so that he can get an idea of what he can do next, and what he can ask for/is entitled to by way of support. His GP may also be useful in this regard.

    What IS important is that you ask for help. This is a bloody awful disease, and too many carers become overwhelmed and ill themselves through the stress (both physical and mental) of caring for someone with dementia. Don't let it be you or your dad.

    Good luck, and keep posting on here.
     
  15. joggyb

    joggyb Registered User

    Dec 1, 2014
    119
    Also meant to say - I'd really recommend trying to get Power of Attorney in place for your mum and your dad. It might be too late for your mum, but it's worth a try.

    And get it for your dad while you're at it. In the years ahead, it will make your life so much easier if you can act for them/him.
     
  16. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    I agree with Jennifer. What we say are just tips that have worked for us and may not work for you. Don’t feel that you have failed because she won’t go - you haven't. When I did get my mum to agree to see the doctor she had forgotten all about it when the day of the appointment arrived and was cross with me. She refused to go to the follow up assessment with the mental health team but, as Jennifer says, they will do home visits and that is what happened. They have been very supportive. And it is also true that the doctor should be prepared to come out if your mum won't go.

    Mum was diagnosed nearly 2 years ago, but only yesterday I cried, not only because of the loss of my mum, but the loss of a friend. We never stop grieving for the loss, but hopefully we learn to cope a little and get by. Good luck for the future.
     
  17. chelsea girl

    chelsea girl Registered User

    Jan 25, 2015
    139
    Hi im an only child too. My dad died when i was 20 and mum is now in the final stages of Alzheimer's. Speak to ur doctor who should visit and discretely question ur mum to find out if she has dementia. Then the actions taken r out of ur hands to a certain extent. You really need help and this forum is great. We r all here for u, any time
     
  18. skaface

    skaface Registered User

    Jul 18, 2011
    108
    Ramsgate
    Hi Layla

    I feel for you, I'm not an only child, but I care for my widowed 86 year old mum by myself (with help from carers going in three times a day) as my sister lives in Norwich 177 miles away.

    My mother has mixed dementia and is also in complete denial so I have to be very careful what I say to her - when I first plucked up courage to talk to her doctor I was already stressed beyond belief and she got extremely angry and aggressive with me for what she thought was me telling lies about her. She bristles up if you say to someone that she has dementia and starts arguing about it. At first she was fine, when I mentioned my best friend's mum, who had dementia she said "what, like me?" but now she has forgotten her diagnosis and gets upset if anyone alludes to it. She has signed a disclosure form now so I can speak to her doctor if I need to. In the event her GP referred her to the CMHTOP locally and they came and did a home assessment - the first I knew about it was when the lady who visited her phoned me!

    Even now she argues against going to the memory clinic and doesn't understand why, I chicken out and say "ask the doctor" when she asks why she needs to go.

    She has deteriorated markedly between her last two visits and as a result of her last visit to the clinic I called Social Services who did an assessment and as a result she has carers going in three times a day. This has helped me a great deal as I don't need to worry about her when I'm away at the weekends (I have a partner who lives about 60 miles away and I spend weekends with him) or away on holiday (yay, I can have one now!).

    I don't have an LPA as she won't sign the forms and she doesn't have a will and again, refuses to do anything about it. When she had a row with her neighbours over the fencing between their properties I tried to find the deeds (which she had in her filing cabinet) to prove to her that she was responsible for them - I couldn't find them and my sister believes she has destroyed them (because she's also in denial about my sister owning half her house). So I got the fence panels replaced myself without any reference to her.

    I am beginning to learn that if she does get aggravated with me she'll have forgotten about it the next time I see her or ring. She's still very suspicious when I try to get her to go to her GP though, for her flu jab say, or her annual check up, but goes eventually.
     
  19. Layla Pigeon

    Layla Pigeon Registered User

    May 15, 2013
    14
    Essex, UK
    Thank you to everyone for you amazing support x

    Dad has got Power of Attorney for Mum both medically and financially just come through as he read about it in the Daily Mail and acted on it quickly thank goodness.
    He has an appointment at the doctors next Friday for his annual check up so will get it logged on their system then. I am also hoping he will speak to them about Mum as he said yesterday "I don't think I am coping with this very well, my temper is so short" I will do everything in my power to persuade him to talk to them.

    This is a wonderful forum with wonderful people on it.
    Thank you all xxx
     
  20. skaface

    skaface Registered User

    Jul 18, 2011
    108
    Ramsgate
    Layla have you been in contact with the local Admiral Nurse?

    Last year when I was at the absolute end of my tether with my mum the memory clinic put me in touch with my local AN - she was very helpful, talked me through the immediate issue and gave me lots of tips and help to deal with future issues.

    If you need to talk through what's going on face to face, they are invaluable and can meet you at home, or anywhere else.
     

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