If it were that simple....

Discussion in 'I have a partner with dementia' started by PalSal, May 23, 2019.

  1. PalSal

    PalSal Registered User

    I have had this experience and shared it here at TP before.
    I get very exasperated with freely offered advice from people regarding what I should do for my husband.
    I have indicated to good friends and family that they should not send me notifications of the research projects which may or may not cure Alzheimer's in the future. All have ceased to send such information to me.
    Today, the source of my aggregation was my new beautiful young neighbor who moved in next door about 30 days ago...She advised me that more olive oil in my husbands diet would help his Alzheimer's. Perhaps this is possible, but this is not a cure, and I told her if simply eating olive oil would cure the disease millions of patients would gladly do so. I tried not to be too rude, but I have been living with my husbands decline and search for relief and cure for 16 years, such preventative dietary changes will not affect his brain at this point in time. Recently another woman I barely know tried to give me a recipe for a vegetable soup which if eaten daily would cure the disease.

    Share me the good intentions of the uninformed. OK my rant is over.
     
  2. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,058
    Toronto, Canada
    I know exactly how you feel. My dreaded aunt once told me that if my mother drank enough water, it would cure her Alzheimer's. Early in Mum's disease, she also wanted to take my mother to an evangelical meeting of some sort where someone would 'lay hands' on Mum and cure her. I firmly stamped that one down but perhaps I should have let Mum go. Mum was in very feisty form then and would probably have punched a stranger touching her.

    My particular peeve was people asking me if my mother knew me - this at the very beginning of her illness.
     
  3. kindred

    kindred Registered User

    Apr 8, 2018
    2,141
    But that's all I ever get, does he know you, does he know who you are etc etc. I now shorten my response to simply saying I know him.
    Why does this matter so very much? It seems to express something very primitive and imperative. I wish people who asked questions would think what it is like to express the answer.
    Kindredxx
     
  4. kindred

    kindred Registered User

    Apr 8, 2018
    2,141
    Oh I KNOW. When I first told a very good friend about Keith's diagnosis, she said, don't worry Geraldine, the Welsh have just found a cure using daffodil bulbs. Really? Gxxx
     
  5. dancer12

    dancer12 Registered User

    Jan 9, 2017
    451
    Mississauga
    Hi PalSal:

    Where did they get their medical degrees, I need one too. I for one think you have done a super job so far. It takes a lot of patience, understanding and co-ordinating to say the least. Hope I handle it half as well as you have. Try to turn a deaf ear, I;m sure they mean well.

    Many cyber hugs. Keep up the good work, you should be proud of yourself.:):):):)
     
  6. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    Some people have asked if my OH knows me. That does not annoy me really because I often wonder myself. The other day he told me, I was watching me. This was as I was fiddling about before getting into bed. Always grumpy when tired, I replied, she could watch all she liked. OH seemed to be sitting there waiting for a fight to break out. We do have mirrored wardrobes so I think that caused the confusion.

    Singing for the brain is the latest one to keep cropping up but I think people know me well enough not to make 'daft' food/supplement suggestions.

    I really wish the professionals would qualify their 'what is good for the heart is good for the brain'. The Mediterranean diet with lots of olive oil is good but it will not cure Alzheimer's - a disease. My OH, like yours I think PalSal, is physically very fit and yes, their survival/longevity is down to our care. Mini rant over.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,102
    Kent
  8. AliceA

    AliceA Registered User

    May 27, 2016
    2,233
    Remember the kid's 'are we nearly there yet'?. Some well meaning chap asks me ' is he better yet'!!!
    This is where the on line courses help, throw a few facts and figures back with a sweet 'but thank you'
     
  9. padmag

    padmag Registered User

    May 8, 2012
    236
    nottingham
    I am heartily sick of all the 'well meaning' advice I usually do the nodding and smiling bit, and ignore. If one more person asks if I've been watching the dementia choir......Yes we need awareness but not the glossy happy clappy stuff as we all know, that is only a fraction of the truth. Although it won't continue and at the best will just fade away. We need to see the real stuff going on and the plight of the carers in all this, not the beginnings of dementia the middle and end are relevant too and need to be shown to educate people. My rant over too.
     
  10. Janie M

    Janie M Registered User

    Jun 12, 2018
    57
    Can only echo all the sentiments here! Even had the sister in law asking "is he better" Her own brother!!! People tend to think people with Alzheimer's are just forgetful, never mind the moods, repetitive ways.....etc
    Rant over !!
     
  11. Baker17

    Baker17 Registered User

    Mar 9, 2016
    248
    I echo all of them too I won’t say any more because it would possibly be the longest post ever!
     
  12. imthedaughter

    imthedaughter Registered User

    Apr 3, 2019
    56
    I don't think people know anything much about dementia other than hearing about people not recognising even their spouses and this is such a shocking, frightening thing I think it sticks in the mind.
     
  13. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    190
    The recent programme about the Dementia Choir seems to have made so many people experts in dementia care! Even the fantastic bar staff at the pub intake Mum to each week suggested that we look for such a group. My mums scathing response " I hated singing at school and I'm not going to start now!" Soon put them in their place! I can't remember my mum ever listening to music so I doubt she would enjoy it now - unless it was football songs sung at a match! She still enjoys watching her team each home match and will be renewing her season ticket next year, although my brother could not face taking her to Wembly the other week! I think we will be scattering her ashes in the shadow of the North Stand at the Etihad Stadium!
     
  14. PalSal

    PalSal Registered User

    Really would like to know about this course Alice....please share where you are getting it from.
     
  15. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,219
    Female
    Dundee
    @AliceA has mentioned 2 courses recently -

    https://www.futurelearn.com/courses/dysphagia

    Also the courses from the University of Tasmania -

    https://mooc.utas.edu.au/courses

    Not sure if these are the ones she refers to (sorry for butting in!).

    I've done 2 of the University of Tasmania ones and can certainly recommend them.
     
  16. PalSal

    PalSal Registered User

    @Lynmax So funny.....my hubby does not like music or singing, but now in his late stage he sings at the daycare with the others.They sing childhood songs My Bonnie Lies over the Ocean. Weird. I am very musical and involved in lots of music. I am super surprised by this latest development of him singing......
     
  17. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    460
    Chard, Somerset
    I have been accused of black humour when I was dealing with my mum but I found it a good way to cope - for me. Even the professionals are well meaning but ignorant. I remember a social worker telling me that I should write mum's diary for the day on a board so she could see it and gain some comfort/control in knowing what the day held. That worked for about a week... But the social worker kept banging on about it, even though: mum would not read it; if she did read it she would not understand it; if she read and understood it, she would forget about it in seconds.
    We overcame the issue by buying a chalk board. At the top of this chalk board was a picture of a cockerel and a four letter word, beginning with C and ending with K and meaning a male chicken. We wrote the information underneath this heading. Mum was happy - she never noticed it. Social worker was happy - she thought she was doing something useful. We were happy - for reasons we should not have laughed at...
     
  18. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Trouble is that professionals and well meaning people become fixated on singing, oils, puzzles, visual signs etc not realising that one size does not fit all and also it's a moveable feast. What might work one minute won't an hour later. My husband has hated the singing group - it was awful to see him squirm. Even I felt uncomfortable and I love singing.

    I am sick of the well meaning professionals telling me that I must look after myself but not really having the answer of how to do it.
    Or you have people ask the PWD how old he is or when's his birthday as if to test the memory. This makes me mad and then try to save husbands feelings and stress level as he tries to think of the answer by giving him a prompt.

    As if to prove all of this my husband refused to go to his respite day club yesterday, saying he didn't want to be locked in and that everyone was old (he's 73). As far as I can work out the activities on offer don't meet his interests - again one size not fitting all. So I have lost my day off and trying not to feel resentful. Thank you for opening this conversation and letting me rant!x
     
  19. Helly68

    Helly68 Registered User

    Mar 12, 2018
    371
    I agree with the rant above. People have no idea. Literally.
    On a low day, people at work were talking about some new fad diet or how in some cultures "families look after their parents" (from someone who knows my Mum is in a care home) and in a less than positive mood, someone asked how my Mum was and I said she had bitten several care staff recently. That effectively stopped the conversation.
    I don't usually say things like this but sometimes.....
     
  20. Lawson58

    Lawson58 Registered User

    And my problem is the very opposite in that because my husband is very high functioning, people don't believe that he actually has Alzheimer's. Just because he is still playing bridge, they assume that he is perfectly fine. I would love to know how many of the bridge club members actually have some form of dementia because I suspect that there are quite a few (average age is probably 70).

    There have been many times when I have had to assist my husband with quite small things and there is always a puzzled look on people's faces. Naturally I don't bother to explain so no one asks me silly questions but with that also comes a general lack of assistance with these small things.

    I would have to say that most of the older people I mix with have a relative with dementia or know someone who does. But I think there is a bit of morbid curiosity in the general public about dementia probably fed by a mixture of fear that they might get it or relief that they believe that they won't.
     

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