Dementia: Door Notes

General

I have read a number of books on dementia and talked to many people about my role as a carer for my wife.  It would be no surprise to any reader of this Blog to realise that my priority is trying to minimise distress.  Sometimes I get it wrong, misread situations, and my responses to M are unhelpful.

I also try to guide other people, relatives and friends, on the best way to support M. Again I often get that wrong and my good intentions are misunderstood.

Yesterday I read a post on Talking Point that has the potential to help anyone who has  involvement with this dreadful condition.    I have managed to get her permission to add it to this Blog:

Door Notes!

I had spent almost 2 solid weeks of dementia around the New Moon and then sometime later I was better for several days straight! Oh Happy Days were back! I did a lot of deep thinking, because some of our 4 adult children are clueless on what to do. They ask questions (I have no answers when I’m “bad off”) and so they avoid us. (My opinion.)

This is what I came up with and taped it to my bedroom door so when you enter you can’t easily miss it. I left space where I or they can add more:

NOT IN RANDOM ORDER:

Don’t ask me if I have taken my meds or vitamins. Bring me water and them (IF) you know for certain that I haven’t, or that I need another one, now.

Distract me with something else. Even if it is just “busy work”. This may last well for 10 minutes or 2 hours then come up with some other distraction.

Have a list made up for distractions that have worked, that you’ve heard or thought of but haven’t tried.

Take your loved one a drive. (my favorite help)

Have your loved ones favorite funny movie to watch: over and over and over if necessary.

Don’t ask me any questions! None!

Let me talk if I want and DO NOT interrupt me while I’m talking even if I am not making sense or have the wrong word or name.

Let me wander around the house, or certain safe areas.

Let me cry.

DO NOT tell me that I “CAN’T” do any of the above. They may not seem to you to help but they DO help me! But if you can distract me into doing something else that is GREAT!

I may want to be alone: perhaps in my room. Or just alone while everyone is around me!

As a last result, for me, at this stage is, hold me and assure me that it will end. LIE TO ME!

This is THE most important thing I discovered when searching my mind: I am “homesick” for ME! I am all too aware in my most worst demented state, that I am not who I was. I may be homesick for my childhood and parents, pets, home. Or for being a Mommy to my babies. Or homesick for who I was in my career. Etc. I wander around; cry; search for ME! And you, my love, may never have even known the ME that I am homesick for, because we had never met then!

I hope this helps, I think it did my children. Jaffy

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