1. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Oh yes, I too have pushed friends away. Then I think they are a bit afraid of contacting me. Could that be the case with your friend? It's so hard to rea ch out when we feel so distressed. How about sending her a brief message? Apologies if I'm "poking my nose in" where it's not wanted! xx
     
  2. Philpsie

    Philpsie Registered User

    Jan 6, 2016
    35
    You’re not picking your nose in that’s fine, you’re trying to help me and I appreciate that. I will contact her thank you. X
     
  3. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Oh that's great! Well Done xxx
     
  4. Philpsie

    Philpsie Registered User

    Jan 6, 2016
    35
    Not picking your nose lol, that’s cheered me up, made me laugh! I meant not poking your nose in
     
  5. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    I laughed too so Thank You!!! I realised what you meant tho! I almost sent a message yesterday saying "appreciate the pistings". So easy to do ;) xxx
     
  6. Philpsie

    Philpsie Registered User

    Jan 6, 2016
    35
    . X
     
  7. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    Hello, I’ve just read through this thread and ‘picking your nose’ raised a smile here too! There are some members on here who have found that respite has been a really positive experience. I know of one lady who has a couple of weeks a year off, someone who has just had respite for the first time, and then there are others , like me, who hung on and on...had respite, and in fact the loved one stayed in the home. It certainly is not any sort of a failure in any way...it is most certainly keeping the promise we made to ‘care in sickness and in health’. We don’t have to (and physically cannot) provide 24/7 care alone.
    Once your husbands meds have been sorted, you might find that he enjoys going to a day centre, and that will be a chance for you to carry on with your own life...and see those grand children! It sounds like you have a good system at the moment, seeing them with their parents, which is better than not seeing them at all.
    Keep us ‘in the loop’...so we know how it goes.
     
  8. Philpsie

    Philpsie Registered User

    Jan 6, 2016
    35
    Thank you, It’s a concept I find hard but I’m sure like the others that have gone before me, I hope it really benefits both of us. X
     
  9. highland girl

    highland girl Registered User

    Jul 30, 2017
    143
    Female
    Yorkshire
    @Philpsie and @Jezzer

    I’m guilty of pushing friends away too, I just don’t think they should have to deal with my problems! Then sometimes when they step back I’ll feels hurt then my walls go up and it’s a vicious circle. I also think they don’t really understand what it’s like living with dementia and feeling cheated out of a life. S xxx
     
  10. vmmh

    vmmh Registered User

    Jun 25, 2018
    71
    I totally understand what you are saying Philpsie. I too am 59 years old and have been dealing with my husbands dementia condition... very much on my own... for about 6 years. He is now only 62 years old. People, friends, neighbors, and relatives say things like "gee your plate is full isn't it" or "wow, that must be difficult". Then they ask you if you went to the new movie recently or ask if you can come to their social function. It takes me aback and I think to myself how stupid can they be! Don't they know what I, we, are going through?! Don't they know we don't go to movies any more or that it is exceptionally difficult to take him to a social function. And what for? He doesn't know he is there or doesn't have any idea what the movie is about. And that it's hard enough to change his soiled clothing at home when he won't sit down and that it's almost impossible to change his soiled clothing in a public restroom.... Sorry to rant. Anyway, I have given up on well meaning "others". I know they mean well but there really isn't any way they can know what we are going through. So now I just smile and say, sorry but we can't come. It's a ton easier for all. And now that we, meaning you and I, have found this forum, I think it is THE BEST place to come for comfort. People here are going through and have gone through the same things we are and have a fuller understanding of the situation. I do mind the loneliness but I am still working full time so I can get some normal people conversation in there. I do, however, frequently cry all the way into work and again all the way home from work. And I think that at least some of that is necessary to help release all the pent up anger and frustration we hold inside. Anger at the disease for taking our spouse's from us, and anger at themedical community for not being able to take the disease away or even manage it well. And for what it is worth, I find that it has become a little easier as he moves further and further away from me and reality. I doesn't matter how strong I try to hold on to him, he still slips away little by little. His PCP started him on Seroquel when he got violent with the TV and window and broke both. The other medications Namenda and Exelon patch don't address that part of the behavior at all. We didn't see where either of them helped at all and so discontinued them. Two things I found that helped the most were vitamin E, I give him 2000 mg daily, and Gingko Biloba, I give him 1200 mg daily. Both seemed to "bring him back" to the here and now just a little bit. If you aren't trying these now you might want to.
     
  11. Rosie4u

    Rosie4u Registered User

    Jun 22, 2017
    219
    Female
    South Manchester
    I feel similarly - but I think it’s because they don’t understand. People say to me - he looks well / or he seems better today when no last time you saw him it was in a morning.I love my husband and he doesn’t like it when I’m not there but I have to have time off or I can’t cope. My OH wouldn’t have help so now we have ‘help’ with things round the house and I get 2 half days.I think it’s crazy when a person with dementia is able to refuse help - the help is for the CARER.
     
  12. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Oh @highland girl I could have written this post! I'm exactly the same and it's been such a relief to find I'm not alone! Some friends have stopped asking how mum is and that hurts. She's still here and still our precious and dearly loved mum. As I keep saying, thank God for TP. Sending love and hugs xxx
     
  13. Janie M

    Janie M Registered User

    Jun 12, 2018
    60
    Oh @Philpsie ...feel that I could have written this. 3 days after my 60th birthday got confirmation of hubbys alzheimers, but we knew. Feel robbed of final years together, I still work also, feel like never have a break, it’s all work and caring. Sending hugs. X
     
  14. Marinajane

    Marinajane Registered User

    Feb 25, 2018
    54
    I think we always may feel that our friends don’t understand and push them away. Some friends come good and some don’t. They may have reasons they can’t cope. In a real sense no one except ourself can know what we are suffering, But if you feel there is a friend who could help whether by listening or visiting or shopping for you or whatever they may be waiting to be asked or not know how to.
     
  15. Marinajane

    Marinajane Registered User

    Feb 25, 2018
    54
     
  16. Philpsie

    Philpsie Registered User

    Jan 6, 2016
    35
    That could of been me writing that! X
     
  17. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    354
    #37 Hazara8, Jul 6, 2018
    Last edited: Jul 6, 2018
    'Emergency respite' comes about when there is no other choice, despite all the deeply felt intent and emotional turmoil which accompanies that predicament. So there is no 'guilt' whatsoever, but perhaps that nagging frustration mixed with heartache that this has to take place at all. 'Best interests' is again a rathersimple phrase, albeit a proper one and 'emergency respite' looks to that outcome. And when people and friends offer help in a genuine way, that will stem from goodwill and a
    meaningful attempt at offering solace.
    But the actual reality of living with or caring for a loved one subject to dementia resides elsewhere, in another dimension. In fact, you have to offer up the whole package, with all the angst, the muddle, the pain, the emotional and psychological realities, plus the personal 'history' of both parties, and
    transport that in to the one who is offering to take over that burden of care, in order that they can
    glimpse just precisely what it is you are dealing with, day to day, month after month, year after year. And that is not possible. And so you carry on, because you feel that there is no other course to take
    and because the love between two people transcends fatigue, despair and sheer endeavour. Also, it
    is often difficult for friends to approach dementia in another, like when approaching someone we know who has just lost a loved one and it is easier to cross to the other side of the road, rather than
    confront and perhaps feel unable to say the right thing at the right time.

    So 'emergency respite' - with all its heartfelt elements, felt at the time - should address the 'unknown' factors, provide some perspective and enable a way forward, for all the family. Dementia in all its forms sets up a huge challenge, always, for those who care. It becomes the life of those who are afflicted by the disease and we always have to respect that, at all times, even when we, as carers, feel wholly redundant and alone.

    And as each and every case is different, we try not to draw comparisons, because one can never, ever inhabit another soul, nor feel their pain or anguish, for they might choose to show no sign of such. But we can share what we know in ourselves to be true about our own stories. And that holds immense value, in as much as it being authentic, and for the most part, told from the heart.
     
  18. Philpsie

    Philpsie Registered User

    Jan 6, 2016
    35
    Thank you for your support, everyone’s been so understanding!
     
  19. highland girl

    highland girl Registered User

    Jul 30, 2017
    143
    Female
    Yorkshire
    Thank you so much @Jezzer, yes thank goodness for TP, it just helps when you realise you’re not alone, other people have just the same feelings. Lots of love xxxx
     
  20. highland girl

    highland girl Registered User

    Jul 30, 2017
    143
    Female
    Yorkshire
    Hi @Philpsie
    How are you today? Hope you had a reasonable night, are your nights generally ok, my oh has some really bad ones, but we’ve had a few good ones recently, although I awoke to him peeing on bedroom carpet in the early hours, I normally wake and get out as soon as he moves as his mobility is so poor, but I must have gone off sound, that woke me up fully! Xxx
     

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