Well meaning friends

Discussion in 'I have a partner with dementia' started by PalSal, Aug 25, 2018.

  1. Distressed55

    Distressed55 Registered User

    May 13, 2018
    67
    Ooh, thanks for the reminder!

    Betty Garrett and Frank Sinatra - Come up to my place - is just hilarious on film. Hopefully this version will be just as good,
     
  2. Sisu50

    Sisu50 Registered User

    Jan 17, 2018
    14
    I looked after my mum and dad who both had dementia for three years. In the end my mum's dementia was very advanced, my father's moderate. My dad died six months ago and I consider him to be the lucky one - I consider my poor mother to be in a far worse position and I do more grieving for her than I have done for my dad. My beautiful mum is now in a home and although she receives very good care, she has absolutely no quality of life.
     
  3. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    I know, they haven't got a clue. My dad is not too bad yet but it is still a stressful situation that I would rather not be in. I understand completely how you felt at that comment and I confess that I often feel the same because I don't want to see dad decline further and I know he would feel the same if he only knew.
     
  4. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,576
    Hampshire
    I was with someone yesterday who I only see every 4 months or so. She told me that someone close to her had been diagnosed with dementia. She then went on to tell me that she will live for so and so years and a few other facts. I mentioned that every person is different and no one really knows how long, what will happen to each person as it progresses, etc., etc, but she seemed adamant about the facts. Sometimes I don't have the energy to correct people or try to gently tell them that it's very much an unknown, and maybe it's not my place to do this anyway. I have to admit that I knew very little about dementia until it hit mum, so have a bit of sympathy for some folk now in that position, as I was three years ago, but I'd like to think I never made insensitive comments about dementia in the past.

    I've had the lot from people over the past few years - from suggesting mum could be sectioned (not from a medical expert!) to saying "they might put her in a straitjacket". (I am no longer in touch with the person who make the second comment!).
     
  5. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    Another one I have heard a few times when I say my dad has dementia is 'does he still recognise you' as if that defines what dementia is. I find that very annoying.
    It's like suddenly dementia appears and that's it, they have lost it all. No thought of the years of uncertainty before diagnosis and the years afterwards dealing with the progression of this horrible disease.
     
  6. Manc70

    Manc70 Registered User

    May 30, 2018
    119
    Female
    S. Yorkshire
    Hi @love.dad.but.. I’m sorry your friend had to go through that, people really need educating don’t they but actually it’s not rocket science, just a bit of thought and common sense.

    So pleased you mentioned sunflowers, mine are just amazing this year, one being at least 6ft and a beautiful golden brown colour and attracting so many bees . We had a good hour in the garden and reading your post spurred me on to going back out and tying the sun flowers up before we have this promised rain. Take care
     
  7. Philbo

    Philbo Registered User

    Feb 28, 2017
    643
    Male
    Kent
    When my wife was first diagnosed 4+ years ago, people's comments used to annoy or upset me.

    "Oh you know it's only going to get worse" or "she will eventually have to go into care" are just a couple of examples that I am sure many of you have come across also.

    Just before her actual diagnosis (we had already been advised that this was likely), we were at a New Years Eve dinner/dance with one of her sisters and BIL. As the new year arrived and we were all hugging etc, my BIL said "Happy New Year, shame the future will be so bleak for you"!!

    I could have punched his lights out - instead I slowly walked my dear wife home - luckily in the darkness, she couldn't see the tears streaming down my face.:(

    I have become more resilient now but some comments, however well meant, can still be hard to ignore.

    Phil
     
  8. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    59
    This says it all about well meaning friends and their suggestion.
     
  9. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    59
     
  10. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    59
    I understand where you are coming from, at a family gathering for my 80th. Birthday my husband was upset thinking he had brought a card, my birthday was not for another three days and we would be at home with friends. My daughter also made the remark’ it will only get worse’. Not at all helpful, quiet tears in bed later.
     
  11. Bay

    Bay Registered User

    Jul 24, 2014
    44
    Kent
    K
     
  12. Distressed55

    Distressed55 Registered User

    May 13, 2018
    67
    That's just breathtakingly awful. How on earth could anyone think that is an appropriate thing to say?? Well done for not punching him - not everyone would have had your self-control.
     
  13. PalSal

    PalSal Registered User

    Sadly, your BIL is a thoughtless oaf....your poor sister.
    I am so grateful that I have a lot of experience living in the here and now....a 24 hour program. I am sure it has allowed us to co exist (or manage) the disease for such a long time. So glad you are all here on Talking Point.
    We just had an amazing day. We got up to bright blue skies but not hot weather. Cool. Headed into the city to hear Avi Avital the Israeli mandolin virtuoso with some of the string section of Sinfonieorchester Basel in the beautiful old part of the city, in the courtyard of the Cultural museum. It was a free concert. He played, Vivaldi, and Bella Bartok and more ...but I cannot remember...a Georgian composer, so that Russian sound and an Italian composer. It was spectacularly beautiful. Because I called a number of our friends ahead of time, three couples who are all very dear to us showed up. Then we had coffee together afterwards. Then Nick and I walked for 2 hours, most of the way home. So, such a lovely day. My son comes on Sunday evening to give make dinner and do an evening walk and night time routine, I will head off to my weekly community work.
    I am just so happy to have such a lovely life, and so glad to be aware and awake for the good times....which keep me going on the really bad days!!!
     
  14. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    What a lovely day that sounds and to meet up as well with friends who just take the dementia day as it comes... a wonderful bonus.
     
  15. PalSal

    PalSal Registered User

    Thanks for the giggle Jane M.
     
  16. PalSal

    PalSal Registered User

    He played this with the Basel orchestra today....it was wonderful enjoy
     
  17. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,205
    Female
    Dundee
    Oh wow! I just love that. What a talent!
     
  18. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    354

    It would be wrong to dismiss much which has been set down about dementia and ways by means to alleviate its varied traits in the act of caring. A great deal of 'help' has been borne out of direct experience coupled to the ways in which this disease attacks and inhabits the brain itself. I have read so much about the brain and dementia and various papers and research texts, so as to feel almost an authority - which I am most certainly not! But I agree profoundly with your sentiments. The 'reality' of caring for a loved one with dementia is the story, from the very first chapter until the end. In that story comes such a varied and unexpected series of outcomes, often hurtful, often obscure and often deeply affecting. We can apply some of the accepted 'rules' in much the same way as we do in everyday life. Politeness, kindness, common good manners and respect, because without these we are lost. But what goes way beyond these is the ability to sustain a way of life which is constantly challenged at each moment, by the very nature of a disease, termed dementia, which throws at you an unremitting pattern of opposition, manifest in obscure and often aggressive behaviour, confusion, perhaps physical violence, only to transform into calm, lethargy, and maybe, just maybe, that precious lucid moment when all seems to be well in the world. No book, no research paper can portray the reality of dementia care. They can explain the neurology, they can tell you which part of the brain is being compromised, damaged. They can like a doctor with his patient, explain why there is this pain or that rash or why an atrophied brain creates the physical outcome it does and why the hippocampus might be the first call in diagnosing a 'memory loss' and the study of a scan will focus on a possible causation and so on and so forth. All of this matters, is credible and important. But we, as carers, don't have any truck with any of that. We sit across from our loved one, the person we have known for perhaps a very long time indeed,and we are witness to a profound change in that person. A change which is a life-sentence for that person, an indirect life-sentence for a carer, spouse or partner. A change which embraces every single breathing moment of your life, even whilst you sleep, because it is there, somewhere deep down inside your own very brain, the way in which this change has also changed your life. And when things are bad, as they can be, they are truly bad. Unlike a broken leg, or even a general disease, which can be understood and borne as best one can, dementia is none of these things. It is a mystery, an antagonist, devoid of your feelings, a manipulator of the one you love, making them behave in a way alien to you and to them. It claims the life of the one you love for its own and there is nothing you can do about it. Other than call upon the one thing that it is not - love. And that love, which is not the love of pleasure, but another love which goes beyond all self, will touch the one you love as surely as the glimmer of daybreak will come day after day, over a horizon which will always be there. That is a truism. And time and time again, when you see one hand take hold of another, for comfort, there is humanity in progress and despite dementia, that 'comfort' is real and cannot be denied by dementia.

    And so, yes, we do not really look to the outside world for things we are actually living , tears and all. When a cure comes about,, we will rejoice and rejoice all the more vocally, because we have 'been there' and survived - just.
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    @Hazara8 This description certainly chimes with my experience and I find it very comforting in a strange way. Physical illness is just as stressful but, and it’s a big but, the person suffering doesn’t necessarily have dementia and is perfectly sound of mind. We read accounts all the time about living, and dying, with cancer for example, sometimes on and off for years, which are painful to read. Living with a PWD is living hell because of the loss of mind, and caring for such a person is so tough. We all deserve hugs to comfort us.
     
  20. PalSal

    PalSal Registered User

    Sending hugs your way!!
     

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