Strategies for coping when living alone

Photo of Dr Jennifer Bute.

I was diagnosed with young onset dementia in 2009, although I was aware much earlier things were not right and had taken early retirement.  It started with getting seriously lost and not recognising people - as well as the usual memory difficulties.  We moved to a dementia friendly village in 2011 and my husband died unexpectedly four months later.

Computers

I have always been computer literate so now my computer is my backup brain.  My son persuaded me to change to a Mac laptop and I was amazed how user-friendly it is.  I have an online calendar which is set up for automatic reminders and can be networked with my children's computers so they always know what I am doing or where I am.

Reminders

Writing notes to myself does not work as I either forget to read them, do not see them or cover them up.  I leave a card on the floor where I will notice it.  I also leave things to post or take anywhere, in front of the front door.  It is possible to get voice recording prompts.  I use timers for electric items where possible (iron, electric blanket).

Shopping

I find shops overwhelming so do my shopping online.  There is an app on the iPad where you can just scan a barcode to add to one’s shopping list.  My problem now is remembering to be home when the delivery comes.

Food

I cannot remember whether I have eaten or not and writing it down or ticking boxes does not work, as how do I know if I remembered?  The only thing that works for me is to either only wash up once a day (so I can see which dishes have been used) or never put anything away until I go to bed.  It is possible to get fragrance dispenser alerts but I would assume it was a hallucination.

Personal care 

I am aware people with dementia ultimately forget to wash or cut their nails so I use the computer to remind me (and for changing bedlinen).  I always go to the loo before leaving the flat.  I decide the day before what to wear and lay it all out on the carpet in order.

Time

I use a digital watch as reading a standard clock face is difficult (hence buying bigger clocks for folk does not work!).

Phones

I cannot work out how to answer my mobile so I only use it for texts.  I cannot understand what people are saying on the phone so only use Skype or Facetime.

Relaxation

I find it hard to read but I enjoy talking books and simple games on the iPad.   TV is very confusing, I watch DVDs or BT Vision recordings of familiar programs (it learns what I like and I do not have to set it).

Outings

I am blessed by belonging to a local church and they take me to church and out for meals.  I have a card I can give to people which describes who I am, my diagnosis, what I may struggle with, and contact telephone numbers.

Presents

I find annual subscriptions solve the problem of gifts for teenage nephews - they can choose and review each year.

Medicines 

I use the Rainbow pill dispenser which also tells me which day of the week it is.  My family make up six weeks medication at a time as the the local pharmacy will not do it.  We are now considering a Pivot Polypill dispensor which has an alarm because I forget.

Losing things

I always try to put things back in the right place straight after using them.  We did try a locator device but they were too large, although there are new developments like the tiny ‘Tile’ that may help. 

Knitting & sewing

I use the wonderful new wools which look like fair-isle or stripes - and use only simple patterns so I can still knit jumpers for my grandchildren.

Getting lost

There are wristband personal alarms, they were too bulky when we looked at them so I do not go out alone.  I no longer travel unfamiliar journeys on my own.

Dr Jennifer Bute developed young onset Alzheimer's in her late 50s.  She was diagnosed at 63.  She speaks at conferences and is passionate about helping people understand and learn more about young onset dementia.  Her website contains videos and resouces that you may find useful.

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