This is a modified version of an anonymous poem shared by dementia advocate Norm Mac.
I made some changes and retitled it. I hope it touches your heart as it did mine…
my heart remembers
when I walk alone and it seems aimless to you,
don’t tell me to come and sit down.
walk with me. hold my hand.
guide me to my destination.
I may be in search of something.
perhaps I’m hungry, or thirsty,
or I need to go to the toilet.
maybe I just want to stretch my legs.
I’m not wandering.
I’ve simply forgotten
where I’m going and why.
when I call for my mother
who is long since gone,
don’t tell me she has died.
reassure me, hug me, ask me about her.
I may be looking for the security
she once gave me.
when I shout out,
please don’t walk by or ask me to be quiet.
I’m trying to tell you something and
have forgotten how to say it in ways
that are familiar to you.
be patient. listen. find out what I need.
I may be in pain. I may be lonely. I need you.
when I become agitated or appear angry,
please don’t reach for the drugs first.
something lies behind my behaviour,
it may be something you are doing.
or it may be too hot, too cold, too bright,
or too noisy in the place I’m in.
maybe I need to feel purposeful, like you do.
maybe I need a reason to keep living, like you do.
maybe I miss my loved ones, like you do.
don’t drug me; discover me.
when I don’t eat my dinner or drink my tea
it may be because I’ve forgotten how.
show me what to do, applaud my efforts.
show me you care about my independence and dignity.
maybe just holding a knife and fork in my hands
will remind me how to eat and drink on my own.
if I push you away while you’re trying
to help me wash or get dressed,
maybe it’s because I feel afraid.
maybe you’re scaring me.
maybe I don’t understand what you said
keep telling me what you’re doing,
over and over and over.
I have a brain disease, that’s all.
I’m still a person with feelings.
I’m still here. I’m still here. I’m still here.
please see past the disease.
please help me live life until the end.
listen, and look beyond the surface.
reach out to me. understand my fears,
they may be the same as yours.
help me feel valued, safe,
wanted and loved.
if I don’t thank you,
it may be because
I’ve forgotten how.
but my heart remembers,
and is forever grateful.
101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging
I love this!
Susan, touches not only the heart but one’s soul. <3