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Recognizing The Changing Face of the beast within

Today, I felt frustrated with myself, angry at myself, as if somehow this new step down is something I could or can control. A lot of changes happening and although I am from most people’s view still doing well, I know within myself when changes are happening. I am not sure if that is a blessing or a curse, sometimes it feels like its both at the same time.

If I am still able to recognize changes then I am still only somewhere in an early to middle stage, heading more to the middle stage, if we are measuring by the scales others use to judge where we are in the whole process of our dementia. I hate using scales of any kind for dementia because it wanes from day to day, but for the sake of trying and unable to find better descriptors we will stick with that.

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So yesterday, my heart started misbehaving again, I couldn’t figure out why, then last night I realized I had not taken all my heart meds in the morning and I had not put my nitrogen patch on…big oops… oh well at least I know why, I guess my heart was trying to tell me it needed its juice, so more reminders maybe, or does it even matter?

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I also increasingly have trouble transferring thought to action, as in I think about doing something but don’t have the ability to actually take the steps to do it.

My eating habits have taken a huge turn as well, I have to set reminders so I remember to eat at least something once a day. I don’t ever feel hungry, I do think about food at times, but to put the thought of eating something into the action of eating again challenges me. Its mostly finger type foods now, which is fine, works for me, I still am eating something, I am not sure if any of it will make changes in my body structure, or weight, that really doesn’t matter either, the only thing that matters is that I eat something, because it is something that my brain is managing not me.

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I am also self isolating more, because it’s where I am happiest these days, not that I don’t want to see someone or visit with people I do, but when and how those things happen are more important than ever. It is also something that I am ok with, actually feeling quite peaceful about, to much noise and confusion is just not worth what it does to my brain and then I suffer the consequences. So it’s important that others are able to meet those with dementia where and how it works for them so they can truly enjoy the time they spend, instead of trying to entice them into doing things that really are of no benefit any longer.

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The other thing is I used to be a very very decisive person, make a decision and act on it, not procrastinating for this girl, never one to over analyze things, whatever it was, look at it and act on it and then it would be done. I am now sitting unable to decide anything about anything. Over analyzing things and then just doing nothing about anything. Simple things to more complex things, go for a walk, don’t go for a walk, hours can pass and I will have done nothing regarding the walk, I can also not, no matter how many times I look at my lovely dementia clock stay orientated to the day. Yesterday, I thought it was Saturday, it was Friday, then I was operating like it was Sunday and I got up this morning thinking it was Monday, its Saturday.

Regardless of all these changes I notice more and more, others likely would not unless they spend an extended amount of time with me. It does not matter if they do or they don’t, as I am happy as I am with all my blunders and fumbles each day.

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None of these are things that are much more than a nuisance, but it certainly does and can cause moments of anger at self and frustration with self. Forgiveness of self is imperative and the ability to laugh at one self is vital. Humour about it all is a saving grace for many with Dementia, I think. Many of us with dementia laugh together over all our fumbles and we wouldn’t like to be laughed at, but most certainly to be laughed with is acceptable. It helps us navigate what would and could otherwise become so troubling one would end up depressed.

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By WWW.Chrissy's Journey.com

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

One reply on “Recognizing The Changing Face of the beast within”

Walking in my footsteps except the feelings towards myself. Thankful for the apathy. It’s April and I got my last Christmas card off last month. I should care. Walking the dementia journey with my friends. Time has no meaning. Glad you’re my friend. Your insight offers a new norm, a new type of world for the 350,000 of Canadians with dementia

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