My dad has dementia and I'm really struggling.

Discussion in 'Middle - later stages of dementia' started by Cocohogg, Mar 30, 2015.

  1. Cocohogg

    Cocohogg Registered User

    Mar 30, 2015
    Hi everyone,
    I'm new to this forum and don't really know what I'm doing.
    My dad was diagnosed with frontal temporal dementia and MS related dementia two years ago. I had no option but to ensure he went into a nursing home. He was living alone and was a constant worry, I know he is safe and happy now, he settled in very well, believing he has lived there for years. My dad has very poor personal hygiene and refuses any assistance, the home are great and let me know when he is getting bad, and I get him to bathe (he only responds well to me). However, I am really struggling at the moment, I have a young family (2 children aged 2 and 4) and I am 33years old. My dad is 59years old. I have become very reluctant to visit him unless it is needed, I struggle seeing my dad the way he is, but I am his only visitor, he has no friends or family, my brother doesn't visit at all, so I do feel very guilty. But I just can't motivate myself to go see him. I love my dad, very very much, but to see him the way he is very hard and upsetting. I feel all the weight has been on me for so long that when he moved into the home I could relax for the first time in years. I feel I am babbling now.
    Maybe if someone could come with me and support me it would help. My husband has offered, but due to my dad not recognising him, that upsets me more.
  2. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    Perhaps having your husband there would help and might make visits easier even if your Dad does not recognise him. As long as your husband is OK with this then have a go. Maybe keep the visit short and then go again soon after for another short visit and see how it goes. That way you haven't committed yourself to too much and it might be more manageable for your Dad you and your husband.
    It seems a little odd that staff in such a home cannot gently encourage/cajole your Dad to have a bath...! has any one of his key workers watched or listened to how you do it? or "helped" so that they learn from you so that you can help them and gradually hand over to them once they are more confident?
  3. Kjn

    Kjn Registered User

    Jul 27, 2013
    Oh how difficult for you. I havnt much advice I'm new here but take your hubby up with his offer on support, if he doesn't mind being not recognised , no need to explain to dad who he is , he is a friend .
  4. Miss Merlot

    Miss Merlot Registered User

    Oct 15, 2012
    Hi Sarah,

    I couldn't pass this thread by and not comment.

    I'm really sorry to hear about your dad. I have been caring for my MIL since my late twenties and am 33 now - I've found that carers in our age range are a very rare breed, and I know it can be very isolating when all your friends are still about parties, families, careers etc, and you are all about Social Services assessments, compassionate communication - or in your case, juggling all of it!

    I don't suppose you are London based or in reach of London?

    We have five of us now in our 20 or 30-something unofficial support group - we meet in central London every few weeks, have a drink and bite, and share war wounds... Both of us find it really helpful to just do something "normal" but also be able to share with someone who "gets" it and will not judge you for anything that you say, without having to go in for the whole formal support group setting.

    You'd be more than welcome to join our little circle anytime!

    MM x
  5. Cocohogg

    Cocohogg Registered User

    Mar 30, 2015
    Hi, thanks everyone for your kind words. I shall take hubby and see how it goes. I'll just have to juggle childcare to do so.
    I live in the north west, which is very unfortunate as I would have loved to meet people in the same situation.
    The care home has tried without any luck to get him to bathe, his GP has tried as well as district and MH nurses. For some reason he'll only do it without issue for me! I only have to actually get him in the bath, the home can then do the rest without issues.
    I just feel so guilty for not going more often than I do, and to be honest I haven't had the strength to go for about 4 weeks now. Does anyone else feel this way, or am I just being a 'bad' daughter?? Xx
  6. Ktynan

    Ktynan Registered User

    May 22, 2014
    Hey Sarah,

    My mum has frontotemporal too, she was also young when diagnosed. Firstly you should never think of yourself as a bad daughter, you love your dad and have done what is best for him and that already makes you a brilliant daughter. I feel guilt a lot as I live a few hours away from mum so don't visit her in the home as much as I would like. But I try to remember that she is safe and being looked after, and that if she was well she would want me to be doing what I am doing, as I'm sure your dad would want you to be.

    I also think it's really important when dealing with the loss of a parent at such a young age to be kind to yourself. You are doing all you can for your dad at this moment in time, and maybe when you begin to process the situation a little more you'll be able to visit him more often. Look after yourself and give yourself time to deal with the hurt this illness has caused, then you might be in a better place to enjoy time spent with your dad.


    Sent from my iPhone using Talking Point
  7. rea123

    rea123 Registered User

    Mar 30, 2015
    oh sweetheart how heartbreaking for you.... im new to all this too but your post really hit home... you must be kind to yourself and let the guilt go... you have a young family who want mummy to be well and happy... dnt carry on beating yourself up...trying to be everything to everybody results in being nothing to nobody... remember your dad is in a safe place and well cared for.... time to start caring for yourself and everything will fall into place...promise
  8. wetnosewheatie

    wetnosewheatie Registered User

    Jun 5, 2012
    I know how you feel I am really struggling to motivate myself to see my Dad regularly. My son comes occasionally and my Husband less so. He doesn't recognise any of us. He has become doubly incontinent and I really cant handle this when I visit. Please don't think of yourself as a bad daughter - this is a tough one to deal with for any one and you have a lot on your plate by the sounds of things x
  9. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I really feel the care home should find a way to manage his personal hygiene. Of course it's a lot easier for them if you do it. I appreciate that they are looking after him well in other ways, but really, this should be their responsibility. What if he did not have any relatives close enough or willing to help? They would just have to find a way. With two little children to care for you should not IMO need to be doing their job for them.

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