Yesterday a friend commented after the blog, asking me to write a blog about the struggles that others don’t see. It is definitely more difficult writing about them, as then I cannot exist in my denial bubble! However, her point is right; I started this one a while ago, and decided to finish it today. If my blog makes others with dementia feel like they are not doing enough to live well, I feel a responsibility to be more open. This is a photo of the laminated sign I have next to the coffee machine, as many days I struggle to make a coffee, especially when I have visitors. It is a bugger if they ask for tea, although I usually manage black tea no problems!
It is really hard work, and at the moment I can still muster the emotional and physical energy to continue with my regime of non pharmacological and positive psychosocial interventions for dementia, and engage with many other strategies to support my disAbilities, but almost weekly now, I am needing to revise them and develop better strategies to support my ever changing disAbilities. Even word finding when speaking is more difficult, but you cannot ‘hear’ or ‘see’ that here.
This is a photo of the sign next to my cook top, as many times now, I have left the gas burner on underneath a pan all day, and it had happened so many times, the only rational thing to do was to make a sign. Still, I don’t always follow it, and leave the house with the flames burning! These types of things make life challenging, as even with the signs, I often don’t think to follow them, or take any notice of them. The can only help so much. I have a sign in the bathroom, for when I need reminding of the order of activities in the shower, and one in my wardrobe for dressing, just in case.
Many of you know I had to start using Webster packs almost three years ago for medication, as was taking the same things twice or more times a day, or not at all, and could not remember when. Even now, with these packs, sometimes I will take the wrong ones, or take the morning and night time tablets through out the day. We have reminders on my phone and my electronic calendar, and my husband has reminders on his phone, to ring me and check I have taken them. This system still often fails as if he is home, I am more often than not inclined to turn them off, and then forget to take the tablets.
There are many more “invisible-to-others” disAbilities requiring strategies to support functioning in some way, but extremely demoralising and embarrassing for me to admit to so publicly here, and even more humiliating for me when others visit and see them. I’m doing it anyway, as I’ve alluded to them before, simply because talking about it in more depth might help someone else. My darling husband will hate this particular blog, as he is seeing me struggle with more things than I was a month ago, and speaking about them so candidly distresses us both, but perhaps more so him. In so many ways, he is the one who is suffering watching from the sidelines, not me. As many of us say, onwards and upwards through the fog…