Strategies to support the disAbilities of dementia

FullSizeRenderYesterday 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.

FullSizeRender[1]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…

18 thoughts on “Strategies to support the disAbilities of dementia

  1. Thank you for such an important post Kate. Leah capture it perfectly when she said “Your strength and fortitude inspires us all”. It’s important because it helps me understand you better ……. and I have a LOT more admiration of your achievements, your strength and your character after reading the above post. You’re right that it’s hard for the carers.

    Oh – and I have signs and instructions everywhere. You should see the instructions I made myself when I had to learn how to use the internet and email when I had almost no memory – quite literally – before it began improving a little. “Click File. Click new window” etc I’ve even got smiley-face pictures hung up around the room, to help remind me to “smile”!!

    PS – would it help you to have a “checklist” of things to do before you leave the house? You pre-print some of them and hang them up near the door where you leave (you can buy those removable ‘hooks’ that you can hang up some forms from – the hooks are taped on and come off really easily ….. no damaging the wall or wood surfaces etc). Then when you’re going out, take a checklist page and tick off everything one-by-one ….. and one of the steps could be to check the stove etc. Oh – and I hope you don’t have a gas stove ….. you don’t, do you??

    If you’d like me to take a photo of the hook and email it to you, let me know. But they are “taped up” by removable tape and easy to use etc….

    • I’d love a photo of the hook you are talking about, that sounds very helpful. And I do have others signs, including one at the front door and many other strategies like that in my life now, the only way I can manage. Help sheets, on line tutorials, and YouTube where there is a “how to” on practical everything is helpful too.. take care, and I look forward to that photo, thanks so much. xx

  2. Your strength and fortitude inspires us all Kate and none of us can really comprehend how difficult living with dementia every day must be.

    Just know that every single hint and suggestion you put out there to enable others to exist more comfortably, again reinforces your courage. It enhances your strengths, not any weakness I believe. It not only helps those who may be struggling to live well with dementia, but those carer givers who sometimes lack external support when caring for family members or friends. And of course people like muself who work in this industry.

    Not having dementia myself, means that every word that falls from your lips is a crucial step forward in my understanding of your reality, which then hopefully assists me to improve upon my ability to make a difference in my chosen pathway. I understand as best i can, your difficulty in discussing the frustrating aspects of living with dementia, as it exposes even more of who you are beneath the incredible strength. But you know, we are all vulnerable in certain ways throughout our life, and to express this, again, is incredibly meaningful to us all.

    You humble us all with your outlook and your advice.

    I think you are wonderful.

    Leah.x

  3. Hi Kate, since I started reading your blog I know things are different for each of us, with regards to what is available to help us in different parts of the world. I don’t know what a Webster pack is, is it what we call a blister pack where you push out each set of medication four times a day. We have ones that are set on a timer for certain times of the day and will alarm when they are due but these Are not free but blister packs are. I have set things on fire and left the gas on. It’s quite frightening. Like you say only those close to you see these problems. Even though I have all the aids I need the problem is I sometimes forget to use them. Part of our city is dementia friendly and we are set to make another part of the city dementia friendly

  4. Hi Kate. Very good blog, I am nowhere near as bad as you but every word that I read filled me with such sorrow for such a beautiful, intelligent and passionate lady. I am proud to call you my friendand I hope many people read your blog and realize just how good they have it. Well done and both you and Pete should feel proud of all of your accomplishments. Mick and Sue

    • Thanks dear Mick (and Sue… proud to call you my friends too. It is never that bad or sad all the time, I just wanted to write about the reality of the daily grind, as requested by island on the comment the day before. It is our reality, and we all have different struggles, with and without dementia… getting on living in the best way possible is the best anyone can do… hugs xoxox

  5. Hi Kate, I was moved by your post and I think you are one strong gutsy lady. I also wanted to say that the prompts you place around your house are clever and practical, and the ones close to you and who visit you would think so as well because even though they can’t possibly feel what you are going through, they would understand what you are living with and impressed with the strategies you have put in place to help yourself.

    • Thanks Cathie… I’ve come to accept them as “life enhancement aids”, in the same way I wear glasses and use a walking stick to stop falling over, as my depth perception is now impaired as well thanks to Mr Dementia!

  6. Dearest Kate – as I am not ‘walking in your shoes’ I cannot begin to comprehend the difficulty and angst you have encountered whilst writing this blog. Why is it that we all struggle with publicly admitting our frailties when at the end of the day all we have to fear is fear itself? Do I think any less of you now? No! On the contrary, I think you are one of the most inspiring people I have ever met. Yet again, you have demonstrated enormous courage by being ‘brutally’ honest and in a funny kind of way, I look at today’s entry as a kind of ‘Kate’s coming out’ to reveal but a small portion of the true cost of living with your dementia. I am sure that this will inspire and help others, including carers, who are living with dementia. With much love. V x

    • My dear friend… I don’t really mind or struggle sharing it, it is the bursting of my ‘denial bubble’ I seriously dislike!!! So much easier to pretend it’s not happening, if you don’t talk about it. I’ came out’ years ago, although suspect here, I have to keep doing that as things progress or change, just so others accept or see the reality. Love you to bits, and then some more my darling Energiser Bunny friend xoxox

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