What advice would you give to others who are new to caring for someone with Alzheimer's?

[KittyO]

Hi
My dad was diagnosed with Alzheimer's a year ago, luckily fairly early on.

I'd be keen to hear from others who have been caring for loved ones with the disease for sometime about what you wish you'd known earlier? What practical tips and emotional advice can you offer people who are fairly new to this? If you could go back in time what would you do differently?

Many thanks

 

[karaokePete]

Welcome to posting @KittyO

Three things spring to mind:-

Firstly read as much as possible(Threads and factsheets here are great) so that you are prewarned about things that will arise and so be better able to deal with them when they do crop up.

Secondly, roll with it - things will get to you at times and its best to roll with the punches.

Thirdly, read this thread - click the link

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[canary]

1 Get POA for both Finances and Health and Welfare organised long, long before you think you will need it. I had to go for Court of Protection deputyship, which is doable, but so much more hassle (and more expensive) than POA

2 Stop trying to reason with them and learn how to use "love lies" so that you dont end up frustrated and they dont get angry. You will never win any arguments with dementia and they lose the ability to follow reasoning (even simple stuff), so you have to come up with an explanation that makes sense to them - even if, in reality, its not actually true.

3 Accept the fact that they have changed and stop trying to hold onto the person that they were. So many things I tried to organise for mum, thinking that she would love it and painting little pictures in my mind about how she would respond. In reality she was either indifferent or actively hated the things I did because she was no longer able to do/enjoy these things and I was devastated.

 

[Hazara8]

Hi
My dad was diagnosed with Alzheimer's a year ago, luckily fairly early on.

I'd be keen to hear from others who have been caring for loved ones with the disease for sometime about what you wish you'd known earlier? What practical tips and emotional advice can you offer people who are fairly new to this? If you could go back in time what would you do differently?

Many thanks

Alas, we cannot rehearse the ideal or wholly effective caring scenario which will address dementia or specifically Alzheimer's. Each case is different, only the disease remains clinically predictable in outcome. Alzheimer's can present so very convincingly that it resembles the character and sometimes behaviour of the one it inhabits to an extent which blurrs the actuality. The burst of anger or the plate thrown across the room is Alzheimer's which purports to be the loved one it has claimed and if you confuse the two then that fuels genuine difficulties for both parties. The brain is extraordinarily complex and remarkably so. This disease changes it in a complex way which renders its owner utterly vulnerable to every moment in their life. But one learns very quickly that this vulnerability cannot be treated harshly nor as one would do when full cognition is intact. No, you have to be extremely watchful and sensitive to all the nuances of behaviour. Never contradict nor attempt to draw someone back into " reality ". That can be harmful. Their "reality" however alien to us, is as real to them as ours is to us. I learneddd

 

[KittyO]

Thank you all for your replies. I need to re-read and fully digest your advice, but already I can see how this Forum will be very useful for me and my family.

As a follow on, what advice would you offer on the practicalities of the day to day? For example how have you managed with loved ones with dementia/alzheimer's who want to go off on walks on their own, at what point have you brought in any kind of external care and what type, how did you help your loved one understand they needed this?