When is kindness bad for you?

Have you ever thought that what you see as kindness may be detrimental to a person?

When you’re living with dementia kindness can be good and bad for you in ways you may not have considered especially in the early stages.

We often think of kindness as being the ultimate act towards any human being. However, when someone is living with dementia, kindness can lead to that person being reliant on others far sooner than is necessary.

Quite naturally, the first thought of those around us is to protect. I always say, when I got a diagnosis of dementia so did my daughters and my friends, but little information around the best way to cope and live.

No one gives you a handbook when you’re diagnosed and one of the most difficult things for families and couples to accept is that you will need help and support and ‘training’ on how to support a loved one with such a diagnosis. It must be a difficult concept to come to terms with. After all here is someone you may have lived with for 20-30 years – why on earth would you need training? But why wouldn’t you need training on how to support someone with a complex brain disease?

Having said that, for couples I think it’s even harder. It’s harder not to disable your partner before they’ve lost the capacity to do something – for the kindness of reasons you often do something for the person but if they don’t do something day after day, no matter how long it takes them, they’ll simply forget and lose that ability altogether far quicker.

Sarah and Gemma use to do loads of things for me in the beginning – for the kindest of reasons – they’d help me with my coat on for example – but I could still put on my own coat. If I suddenly stopped and allowed them to do it, within a few weeks, I’d forget how to put my coat on and they’d be stuck with having to do that for me forever. Allow loved ones to take an hour to put on their coat to get ready to go out – that allows you to do something else.

It got me thinking about how lucky I am, in many ways, to live alone.

When you live with someone, it’s quite natural for one to move things around, tidy up, be messy – all of which would be unhelpful for me.
It’s human nature to do things for the kindest of reasons but often causes confusion.

I’m fortunate in so far as I was always an organised person so I havn’t had to learn that new skill.

If there was someone else living in the house, it may become impractical or seen as a nuisance, maybe annoying or something may get moved accidentally – all of which would lead to confusion.

I don’t have someone rushing me or questioning why I can’t remember something.
I don’t have to worry about repeating myself
I don’t have someone doing things for me because it’s quicker
I don’t have someone fussing when I’m having a bad day
I don’t have someone urging me to eat when I’m not hungry
I don’t have to think whether I’ve upset them
I don’t have to worry that I’m having to do things differently
I don’t have to worry about being slow
I don’t have anyone correcting me when I get the wrong word or date or name
I don’t feel like I’m letting anyone down
I don’t have to justify why I’m behaving as I am.

However, there are things that I miss…….

I don’t have that hug available when things go wrong
I don’t have that someone to help jog my memory
I don’t have that support when I find things difficult
I don’t have that back up brain to remind me
I don’t have the constant company
I don’t have that someone to laugh with
I don’t have someone to switch off the cooker when I forget…..😳

But all in all, I enjoy my own company and am happy to muddle along alone and my daughters are only a ‘whatsapp’ away………..and Twitter only a click away…..how the world has changed…….

Ha! Love this😊

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

15 thoughts on “When is kindness bad for you?

  1. Thank you, Wendy. This is very helpful and backs up what I have learned myself. It was particularly interesting what you had to say about the differences between living with someone and being on your own. Would you have any objection to my putting a link to your post on my blog?

    Liked by 1 person

  2. This rings so true. People are often too quick to take over doing things, often simply because it’s quicker for them. My mother is now at the stage where doing most things are beyond her, but still people are taking away the few she can cope with and enjoys, out of kindness.

    Last week my father and I visited her in the home where she now lives, taking her 2 ripe figs from her fig tree. Normally she would peel one like a banana and eat it from the skin, but no, against my protestations, staff whisked them away to be peeled and cut up in the kitchen for her. She enjoyed the fruit, but it wasn’t the same.

    Liked by 2 people

  3. Thank you for outlining this often well intentioned action. I suppose it’s a case-by-case basis on what works best for the person with Alzheimer’s/ dementia to ensure the necessary balance for them. Thank you for this thought provoking article

    Liked by 2 people

  4. I often reflect the pros and cons of living alone and managing the challenges of dementia. I agree with you that there is a sizeable list on both sides, and in conclusion I believe that those of us living alone, generally appear to maintain our functioning for longer…would love a few more hugs though 🙂

    Liked by 2 people

  5. Having experienced this I feel it’s a fine balancing act for the carer and difficult to get right. I’ve certainly sat back and let my oh get on with putting his shoes on and tying his shoelaces but what I can say from the experience is that it increasingly became a frustrating and distressing process for him and it eventually became kinder to do it for him to reduce his anxiety levels. Knowing when is the right time to step in is very difficult as by that stage it would have been cruel not to. At some point you have to accept that capacity is reduced to the extent where this level of independence is no longer possible. Dementia is a progressive illness and what someone was capable of 3 months ago they may no longer be capable of today. It’s hard to step back as a carer and accept that your loved one may no longer have that capacity, especially if you’ve fought hard to keep them independent. But at the end if the day you have no choice.

    Liked by 1 person

  6. I have found that really all that matters is ‘mood’. If happier being left alone to get on with things good, if happier having help to lessen the frustrations good. And hugs make everybody happy. (here’s a virtual hug from me :-).

    Liked by 2 people

  7. ‘for couples I think it’s even harder. It’s harder not to disable your partner before they’ve lost the capacity to do something’

    I think you’re on to something, Wendy. I was writing my Carer Tips newsletter this week, about helping Lena with food, eating and mealtimes in the early days of her Alzheimers. Looking back, I realise that although sometimes my help was essential, there were other times I jumped in and took over when it would have been better to do things together. I was too concerned with saving time. My time!

    Just as I was finishing my writing, I saw this post from you – and since you’ve put it so well, I’ve linked to you and quoted a couple of lines. Here’s my newsletter: https://mailchi.mp/b0c63c2f71e6/carer-tips-food-eating-and-mealtimes-part-1

    Thanks for your clarity – and speaking for Lena, when she can’t.

    Liked by 1 person

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