A Thought that revolutionized my own Care-giving

Discussion in 'I care for a person with dementia' started by BluesDog, Nov 5, 2017.

  1. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA
    Three years ago, my Mom took a fall, breaking her hip. That started a series of events that catapulted me into care-giving for both of my parents, now both diagnosed with Dementia, and both challenging me daily. The last three years have been difficult. Now, looking back, I see that many of my difficulties came from lack of understanding. When their behavior first became odd, and I began to uncover the mistakes, the lies, the neglect of duties and hygiene, it really blindsided me. I really did not have any idea how to deal with them. The next order of business was to take Dad's car from him; his driving had become horribly unsafe. He spent a lot of cash on that car and he was furious when I refused to return it, after one of his spells in a rehab facility. He still resents me, and doesn't trust me, as he slips into senility, and it's sad because our relationship may not recover before we lose a cognizant connection. I am the only family member caring for them. There is a sibling, but he is of no value for this. In fact he had become threatening to both the old folks and me, so I have forcibly removed him from any further responsibilities.
    Now I have had three years of being involved. During this time both parents have considerably deteriorated. I lead a discussion of aging and care-giving issues on FaceBook. We regularly have about 150 participants, world-wide in origin. The other night, in the midst of a discussion, it hit me suddenly that I was doing almost everything wrong. There's a fundamental principle that we were all missing:
    We tend to think of the aged and dementia patients as conforming to an age old euphemism: They are in their Second Childhood. Within that concept lies a huge flaw. When we correct a behavior in a child, we can expect the child will remember the lesson, and their behavior will improve. We cannot expect the same from a Dementia Patient. When we correct behavior in a dementia patient, the following day, they may not remember at all, and are very likely to repeat the offensive behavior. We cannot allow this to anger us or be a source of frustration. Punishment cannot be used to correct behavior, as with a child, nor can we speak harshly, criticize, or demand: all such actions are as useless as they are damaging. Dementia patients may not remember the words you use but they will remember how you make them feel. Therefore only loving, comforting behavior will produce any results, and even then, you may find a worsening, the following day. It's a downhill run all the way, and all we are trying to do is make it easier: not so painful, less frightening... and preserve some joy, some bit of happiness, as our elders and friends approach the gate at the end of the garden walk.
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,433
  3. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA
    thanks for the link, and the Heschel quote. I'm sure to a person who has been immersed in this subject for some time, that my little observation doesn't seem revolutionary. however, many in my own discussion group found it to be helpful, even profound. So, in the hope of shining a tiny ray of light into another life, I was encouraged to put it out there.
    The list of guidelines you provided is excellent. thanks again.
     
  4. Lawson58

    Lawson58 Registered User

    I shouldn't think that there would be many people on TP who are 'correcting' their PWD as if they are children.

    There is a massive difference between correcting behaviour and managing it and I believe that most of us are using strategies and methods that help them and their loved ones get through the course of this dreadful disease.

    Any idea of trying to correct my husband would frankly 'do my head in'.
     
  5. copsham

    copsham Registered User

    Oct 11, 2012
    593
    Oxfordshire
    I love "light bulb" moments like the one you had, Bluesdog. Fascinating how something suddenly makes sense in a profound way. My more recent light bulb moment was that it is okay to be vulnerable not having to be in control and managing all of the time. This helped me let go of a lot of baggage!

    It sounds like you are reaching out to a lot of people via Facebook. We are certainly lucky for all of this sharing.
     
  6. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    Well, I am one who feels suitable chastised after reading your post. Having just this minute likened my husband to a teenager. The guilt monster is right where I deserve him to be. On my shoulder, peering round right into my face and grinning.
    I read C S Lewis, The Screwtape Letters, years ago. The devil I imagined then, is now reincarnated as the guilt monster. Life hasn’t changed much in 45 years.
     
  7. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,509
    Ireland
    I think that while Jennifer is right in that here on Talking point, many people would understand that people with dementia are not like children. But among people who have never dealt with dementia, or are coming up against it for the first time, @BluesDog makes a good point. My daughter worked for 9 years in Childcare in a setting that catered for many children from "disadvantaged" backgrounds. She worked with 2/3 year olds mostly. She was highly trained in her field, and I had trained in elder & dementia care. When my husband was at home, and I was dealing with him, she would occasionally be spluttering at me in indignation, when, for example, I would distract him from being aggressive or challenging, by fixing him a bowl of his favourite icecream. She'd go "But...but... you can't do that! You're rewarding bad behaviour!" She, because that wasn't her world, found it difficult to grasp that concept that no matter what you do, a person with dementia is not going to "learn". They are going to continue to lose ground.
     
  8. father ted

    father ted Registered User

    Aug 16, 2010
    686
    London
    Bluesdog,
    I am glad that your 'Road to Damascus' moment has helped you deal with your caring responsibilities and anything that helps any individual is great.

    I have admit I have found it tough. The first couple of years you are finding your feet and adjusting, the next few you settle into a manageable routine but when you start to run into 6,7 or even more years of caring and things become more unpredictable it feels that all you have learn't in the run up to this point is of no use.

    I never came to view dealing with my Mum's dementia as trying to correct a child. I struggled because I was still trying to defer to my Mum, give her choices, involve her in decisions to afford her the respect she was due as my Mum and an adult. This of course was wrong. Her world is shrinking. Choice is too complicated, reasoning is beyond her. One day she is feisty and uncooperative, afraid of nothing. The next day she is afraid of everything. One could theorise about grieving for the parent that was always there for you, a pair of comforting open arms when the world is against you who now looks to you for comfort and all the adjustment that entails. Or you could go along with the simpler 'stuff happens'. Which ever school of thought you prescribe to it ain't easy we all find our own way that is right for us but even so we all struggle at points.
     
  9. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    460
    Chard, Somerset
    I think the 'lightbulb' can go on at any time in this hideous journey. Reading posts on here has helped enormously (as has unloading feelings at times) and sometimes I can be ready for the next bombshell; but sometimes I'm not and when it happens I have to regroup, rethink and carry on. As carers I doubt that any one of us is professionally trained for this and so we learn on the job. If I had to do it again I would be quicker on the uptake, obviously, (though every PWD is different) but all any of us can do is our best and be proud of ourselves for doing it. Sometimes it is so obvious what has been going on and how we should have been dealing with it and sometimes it is still puzzling six months down the line. However, as Lady A says, all the correcting in the world is nothing compared to a soothing, distracting bowl of ice-cream and a cup of tea.
     
  10. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA

    thank you. I took the info from here, there, where it has been appreciated. we are all at whatever level we are at... we are the congregation. we can't all be in the choir. ;-)
     
  11. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA

    right?! I'm still slappin' myself and it's been a while. things are changing daily with mom and dad... and none of the changes can be seen as good. I take a lot of deep breaths and I think before speaking but they still get me in a bear trap pretty often. this is challenging.
     
  12. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA
    excellent example, the ice cream. I'm going to try that on dad, who is becoming hostile.
     
  13. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA

    oh sooo right. things are definitely becoming more unpredictable. yes it may have been arrogant to use the term "correct behavior" but at the same time, something must be done when Mom starts screaming in a public place... she's beyond reason. It's difficult for me because I suffered a lot of verbal abuse as a child and I simply won't take it any more, but *there I am* being berated and loudly in a public place... very challenging. it's so hard to reach out with open arms when she is screaming and clawing... but I'm working on that.
     
  14. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA
    I am on here tonight, after an absence of some time. this is very nice to find so many sincere replies.... I have been sick myself (pneumonia) and will be returning to my parents tomorrow, so it's extra great to be able to get some input right now. yes I think I need to entertain and comfort more than direct. we are in a bind, dad has screwed up ALL the family business, and I have a few weeks to figure out what he has done and get him out of trouble. literally, the law is coming after him. at 87 he doesn't give a damn so it's down to me. I'm in a bit of a fright, but I believe we shall manage. much will be learned tomorrow.

    thank you.
     
  15. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA
    and thanks for seeing that my position wasn't all that unusual. I suspect it's rather common actually.
     
  16. margherita

    margherita Registered User

    May 30, 2017
    2,416
    Female
    Italy, Milan and Acqui Terme
    I should learn your words by heart, @LadyA and repeat them to myself whenever I try to " teach" something to my husband
     
  17. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA
    agreed
     
  18. BluesDog

    BluesDog Registered User

    Nov 4, 2017
    10
    Male
    TEXAS, USA

    much to my own surprise I found myself doing exactly that, when I analyzed my own actions. when confronted with childish behavior I automatically became parental, having raised two extremely difficult sons, it came easy, and that's the reason it was a pivotal moment for me. that's what this post is all about. when I took it to my own group, many agreed, they had done the same. so it's not so uncommon as you might think, and if everyone here had such a clear understanding of how to handle this as you seem to, then I suppose the forum would be very small indeed. it must be very difficult to work with a partner, that's a completely different dynamic than working with one's parents. I can't imagine. I wish you all the best.
     
  19. Lawson58

    Lawson58 Registered User

    I taught at the toughest school in our area for many years, many of the children displaying difficult behaviours and who were often violent and confrontational.

    I am well aware that I manage my OH in much the same way I used to manage all those naughty kids and not ashamed to admit it. Correction then was for schoolwork only and had nothing to do with getting the kids through the day in a stable and happy environment both for their sakes and my own survival.

    I think many here on TP instinctively do this willingly and with great respect for their loved ones and like everyone, we all make mistakes, get things wrong, lose our patience and have mini and major meltdowns. I certainly wasn't judging you, merely commenting on how well most people cope in such stressful situations.
     
  20. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,509
    Ireland
    Exactly. My purse at that time carried a treasure trove of treats! Small, wrapped chocolates and individual wrapped chocolate cake bars. packets of fruit jellies, which were another favourite of his, they are like very soft gummies, coated in sugar! Jelly babies. Even crackers & cheese, those "snack packs" you can get in the supermarket. And of course, daily trips to a cafe for tea.

    Good luck with the sorting of the business. I found most people were very understanding if I explained my husband's problem. Maybe if you explain the situation to business associates, and that you are doing your best to sort things out, it would buy you some extra time. Meanwhile, are you familiar with this US based site? They have a lot of valuable information on everything from finding residential care, to talking to colleagues and others about dementia: https://www.agingcare.com/
     

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