Living with dementia – It’s not postponed!

For the last two months I’ve written about the coronavirus pandemic. I want to continue with this theme since it is at the forefront of all of our minds, but also with a little nod to the significance of this month to my blog.

Regular readers will know that May is D4Dementia’s anniversary – 20 May 2020 marks 8 years since I began D4Dementia.

In all of that time, despite writing about so many different topics, with everything from symptoms to sex, elder abuse to end-of-life, I can honestly say I never ever envisaged writing monthly blogs about a virus pandemic.

But of course, who did imagine we would be living in the middle of this global health disaster? Traditionally May in the UK marks Dementia Action Week, and is an important week of blogging for me, but like so many other events that have been delayed, this is postponed too.

 

Living with dementia isn’t postponed

It must be remembered, however, that living with dementia isn’t postponed. Millions of people with dementia in the UK are still living at home or in sheltered housing, supported living, care homes and hospitals, and many more with suspected dementia have had appointments for diagnostic tests delayed, leaving them without a confirmed diagnosis and all the fear and uncertainty that goes with that.

Life goes on in this strange way that we may have to accept, in some part, is the new ‘normal’ for the foreseeable future. Finding ways to cope is a crucial element in living through this pandemic with its current restrictions, and also potentially being prepared for further lockdowns in the future should these be necessary.

 

Tips for supporting a person living with dementia

For this blog I’ve put together some more tips for supporting a person with dementia that may enable them and you to cope as well as possible with our current and future ‘normal’:

 

Keep to routines as much as possible: Many of us probably perceived our routines as rather boring prior to lockdown, but with so many aspects of daily life restricted, changed or cancelled, it’s no surprise that many of us now think of our old routines a little more fondly. Routine is something that anchors us to the day, and can help us to avoid feeling all at sea (see my ‘write-off’ tip further down).

To help a person with dementia to stick to THEIR routine (not yours) as much as possible within the restrictions, it may be helpful to write down the day’s milestones and illustrate them pictorially, or use a digital device if the person is familiar with that. A dementia clock may be needed to help the person orientate themselves in the day so that they can try to align what they think should be happening with the time it’s due to happen.

While it’s tempting to be ambitious and try to pack as much into the day as you can, it’s better to do less and feel less rushed and stressed, both for the person with dementia and those supporting them. Think quality over quantity whenever possible.

 

Be creative: Finding different ways to do things is a skill that many family carers of loved ones with dementia, and indeed the professional care workforce, have always needed to harness in order to provide the best support possible. Whilst routine and familiar ways of doing things can be very important, modification may be needed to comply with the current restrictions, or simply because the person’s dementia is changing.

I love this film from Dementia Carers Count – it shows how a husband and wife team have been really creative in meeting the gentleman’s needs for exercise, and tried to future proof this for when he may be able to go back to walking with a friend or volunteer in a socially distanced way.

 

Accept ‘write off’ days: I personally have had a few days during the UK lockdown when I’ve just had to write the day off. I may have woken up with plans or ideas, but with one thing or another (it doesn’t take much with a toddler in the house!) that has been thrown out of the window before 9am.

There are all kinds of reasons why we all need a ‘write-off’ day sometimes, from a bad night’s sleep (very common for people with dementia) to not feeling our best, having an argument (many households will be having more of those during the lockdown) or just mentally not being able to deal with the day ahead (this will chime with many family carers).

A write-off day might mean more time in bed (just try not to ruin the nighttime routine completely or sleep problems may become a regular feature), more screen time or just having what I call a nomadic day where it’s hard to focus on anything.

Above all, be kind to yourself and anyone you are caring for if this is your day today or tomorrow. These days pass just as the good days pass. It’s a cliché, but tomorrow is another day, and whilst it may have all of the same challenges, give yourself a chance to mentally and physically cope better by not being hard on yourself.

Some professionals advise writing down your thoughts and feelings to help you process them, and of course sources of support, like the Admiral Nurse Dementia Helpline, are there to provide advice too.

Next month I will continue to look at the issues raised by the coronavirus pandemic. Until then:

  • Keep safe
  • Stay at home
  • Keep your distance from others
  • Look after yourselves
  • And stay well.

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

 

WANT TO READ MORE OF MY CORONAVIRUS COVERAGE?

  • My March 2020 blog answered two key questions: How do we hand-wash more and how do we self-isolate?
  • My April 2020 blog addressed how families and their loved ones in care homes can cope with being isolated from each other.

2 thoughts on “Living with dementia – It’s not postponed!

  1. I would like to read more of your story and experiences with vascular dementia. My Mom was diagnosed in spring of 2018 after the passing of my Dad in Dec. 2017. As a registered nurse, I wonder what the disease ‘looked like’ as your Dad progressed. I have not had patients with dementia with the manifestations I see in my mother.
    Thank you for sharing your story.

    1. Hi Kathy, thank you for your comment. I’ve written quite a few blog posts about my dad’s symptoms and how his dementia manifested itself. Examples include: http://d4dementia.com/2013/07/ten-lost-years.html, http://d4dementia.com/2013/05/what-is-dementia.html and http://d4dementia.com/2018/04/the-rainbow-of-dementia.html. Hopefully these will give you some idea of what my dad’s vascular dementia was like, but of course everyone is different so it’s only his experience. Wishing you and your mum well. All the best, Beth

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