Just some advice amd kind words needed!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Ali Bap, Jul 26, 2007.

  1. Ali Bap

    Ali Bap Registered User

    Feb 27, 2007
    1
    Hi

    First time ever on here, v. long story, will try to keep it short though....

    Dad was a heavy smoker but always in good health. About 8 years ago he suffered a minor heart attack, further tests led to a double bypass. A few years after that and several tests later confirmed an aortic aneurysm - again another major operation from which he pulled through.

    Always a successful businessman, we (mum, hubby and I) began to notice a few subtle changes in the way he spoke/behaved etc. from then on. 'Not his usual self' is, I guess, the best way to describe it.

    A few more years later and lots of treatments (including Aricept etc) his diagnosis was vascular dementia potentially brought about by the second operation, during which he was deemed to have had 'an amount of' mini-strokes. This has never been confirmed though.

    Told you it is a long story!

    Last year, he has gotten worse and worse - he has retired from successful business but can no longer speak properly, do his beloved crosswords, and his behaviour is becoming more and more bizarre. The doctors are telling mum it's down to the fact he has aphasia but we know it's more than that.

    Last August things reached a head. I had my first baby (I'm an only child so dad was always begging me to make him a granddad!) and then moved 6 1/2 hours away to Scotland as my husband is in the Air Force. Around about the same time, dad started threatening to kill my mum, I persuaded her to call in the CPN and he was sectioned. Dad went into a nursing home last December and is still there now, virtually doubly incontinent, hardly speaking, very retarded and not seeming to recognise my mum.

    The thing is this - I feel SO guilty I cannot be nearer my mum (although we are moving next week so I'll only be an hour away - hurrah!) but the main thing is that mum visits dad 6 days out of 7 a week, by bus, no actually 2 buses. She is in very good health thank goodness, but feels guilty if she misses one day. Dad is still v. young, 67, and it kills me to see him like he is. Truth be told he is not my dad anymore, just a shell. I am trying to persuade my mum, for her own health, to cut down her visits but bless her, she is still coming to terms, nearly a year later (as we all are) with what has happened.

    People tell us that he doesn't know us and is in a 'little world of his own and won't realise it if he doesn't get a visitor one day' and yet a huge part of me is thinking 'how the hell do people know this and where is the research to prove it?' Sorry for ranting but it's just good to get it all off my chest. It's been a strange year....

    Ali
     
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    #2 TinaT, Jul 26, 2007
    Last edited: Jul 26, 2007
    ps:

    It is indeed a terrible shock to see the rapid, serious decline. I am also in a state of shock after two/three years of the same type of deterioration in my loved one who is also a relatively young man. There are so many of us on the TP site who can relate to what you are going through. I know you will get support and be better off for sharing the agony with others who also understand the emotional turmoil this terrible disease brings in its relentless progression.

    Your mum is still raw and perhaps the only way she can deal with the situation at the moment is by constant visiting. When she is ready for it the advice by the staff not to visit every day will probably be accepted. You are a loving caring daughter. Please remember support by telephone is such a valuable thing. You don't need to be there in person to show love and support. Don't beat yourself up, just be there for her in whatever way is possible.

    xxxx TinaT
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,658
    Kent
    Welcome to TP Ali.

    It sounds as if your dad`s decline has been quite rapid, it must have been so difficult for you and your mother.

    As sommeone who is sole carer for my husband, I understand your mother`s need to visit every day. She is doing it for herself as much as for your dad.

    No matter what well meaning advisors say, she is not yet ready to let him go. This has nothing to do with whether or not he appreciates her being there, nothing to do with whether or not he is even aware of her being there, it is her wish to be there, `just in case`.

    As far as you`re concerned, you have no need for guilt. It was not your choice to move away, circumstances dictated it.

    Now you are returning, perhaps you will be able to share the visiting with your mum, and perhaps she will allow herself to have a couple of days to herself.

    Keep posting, let us know how you get on, and good luck with the move. I hope you find TP helpful, and supportive.

    Love xx
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Ali

    Welcome to TP.

    Your poor dad has had more than his share of problems, hasn't he? And so has your mum, caring for him all this time.

    But I'm afraid you are unlikely to persuade her to cut down on the visiting. As long as she feels able (and probably long after), she'll continue.

    She will miss your dad so much, and need to be with him, whether he recognises her or not. And even if he doesn't recognise her as his wife, it's very likely that he feels her love, and gets comfort from her visits. But you're right, no-one can prove that.

    I'm glad you're moving closer to your mum, she'll appreciate your support so much, and she may be persuaded to take time off from visiting if you can go in her place.

    Thanks for your post, and don't apologise for ranting. We all do it when things get on top of us, and there is always someone here to support.

    Let us know how it goes,

    Love,
     
  5. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Ali,
    Such wise and sensible words from Sylvia, Hazel and Tina.

    The only thing I can think of is, once you are living nearer, you might persuade your Mum to let you do the visiting one day a week so she has a break. She might feel OK about that because someone who loves him is there to visit him.

    If this worked, at least she would get one more day a week to herself without feeling (too) guilty.

    I realise this may not be possible for you, so I don't want to add to YOUR guilt!!!
    These situations are never easy on anyone who is involved.

    I hope being nearer your Mum will help you to feel better. In the meantime, you CANNOT do anything about the distance, so give that old "Guilt monster" a good flying kick!!! :)
     
  6. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Ali
    Dementia brings so much sadness to peoples lives. I am sure that your mum is very grateful for the support you give her, so, no need for guilt.God bless your mum she needs to know that your dad is ok, it's something that brings peace to her. I am sure that the love and warmth is felt, regardless, if they do or don't recognise us. We definitely know who they are. Everyone deals with situations in their own way. I can understand your worry about mum getting run down, you can only offer what help you can and let mum decide if she wants to accept, mum will know when the time is right. Best Wishes. Taffy.
     
  7. lovdn2

    lovdn2 Registered User

    Jul 24, 2007
    25
    Hello Ali

    As the daughter of a sufferer, I understand where you coming from.

    It's good that you are moving nearer to your parents now, you and your mum will be able to see each other more often, which is lovely for you both....and your baby.

    As for your mum visiting every day, I can understand that too, she needs to do it at the moment, she loves your dad as much as ever no matter what.

    My mum seems to live in the moment, so I don't know if she misses visitors on the days she has none or not..........I doubt it though.

    I visit because I love her and miss her, she no longer seems to know anyone, but that makes no difference to my feelings for her, she's still my mum.

    Take things slowly, you have had a short time in which to come to terms with everything.

    Hope the move goes well for you all.
     

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