When Dementia Causes a Values Dilemma

when dementia causes a value dilemma

Various dilemmas arise when your loved one has dementia in terms of what you value / what you know they value and what is necessary to keep them in the most optimal safe and happy state whilst living with the disease. Some examples follow. If you have come across a dilemma in your situation, please post it in the comments below for the community to learn and comment.

  • Being forced to lie
    Like many people, I have a strong value of honesty, yet there are times when I had to lie to my parents to avoid distressing them. The experts call it ‘therapeutic lying’. The person with dementia is living in their own reality and the Alzheimer’s Association suggests to adopt their reality to avoid arguing with them which only causes agitation. It can be tricky lying to parents who scolded you for lying growing up, whilst knowing it’s what is best for them.
  • Medication
    My parents were Naturopaths and were 100% against any medication that was not natural. They would rather endure high levels of pain than take a Panadol. To a certain extent I honoured this in terms of saying no to the flu vac and Panadol, however I had an ethical dilemma when my Dad required occasional sedation medication due to his behaviour. The alternative was for him to no longer be able to live there. As I knew it was completely the best place for him to call home, I had to say yes to medication as it was either that or he would be homeless.

  • “Putting them in a home”
    I’m sure a lot of people have said those words and have had to go against them when ‘push came to shove’. When the dementia is advanced, it would be near impossible to care for them at home without a nursing background or an expensive private nurse. As I wrote in my blog – Choosing a Care Home for Your Loved One with Dementia – it is optimal to look earlier than needed to ensure you are able to secure a place that you are comfortable with, if they have to go somewhere.

  • Talking to medical staff behind their back
    When my parents were still living at home but were both deteriorating, the time came when I had to attend medical appointments with them. It was very strange and unnerving to talk about them while they were in the room, as if they were little children. It felt wrong, yet I knew it was right. It felt condescending, yet I knew it was care. The worst was concerning my Dad’s driving license and having to agree with the medical staff that it wasn’t safe for him to drive any longer. It completely devastated him and he was very angry. It felt like I was against him (especially for him), yet it was right, for him and for the general community on the road.
  • End of Life
    Dilemma’s can arise at the end of life stage if there are differing values. In my case, I was an only child and had the same faith as my parents so the dilemma’s were minimal. Where there is more than one child and different beliefs involved, it could cause some stressful value dilemma’s.

Dealing with Values Dilemma’s

  • Gain as much knowledge as possible so you have the understanding to make a decision you will be happy with.
  • Take a step back from the emotions involved and look at the decision from an objective perspective.
  • Think about the best possible outcome and what decision will produce that.
  • Allow yourself to make a decision that may not be perfect but is the best decision you know how to make given the imperfect situation.
  • Remind yourself the need to be realistic, not idealistic.
  • This whole situation of your loved one having dementia is messy and complex and issues cannot always be ‘solved’. Sometimes you need to live in the tension of that.
  • Be patient with other family members in the decision making process. Everyone is feeling the grief and it causes different reactions.

4 thoughts on “When Dementia Causes a Values Dilemma

  1. A well thought out article. Thanks. I have tried not to lie as much as possible but to merely restate a truth in a different way. Eg When my mum asked if my dad (deceased) was coming to lunch, I said he couldn’t make it. I only once tried to remind my mum of the fact that her mum was deceased and the surprise and grief it caused was a lesson learned. Thankfully when we make such mistakes the nature of dementia means that the trauma is soon forgotten and this there is no ongoing grief.
    My other painful dilemma was when leaving my mum at the home she would look at me plaintively and ask if she could go now. Ignoring her plea and leaving her behind a locked gate was heartbreaking.

    Liked by 1 person

    1. Thanks for sharing your story. Yes good point – they soon forget any pain caused. I totally relate to leaving them locked at the home – I would often cry after leaving from that look on their face of wanting to come too.

      Like

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