Training the Trainers

Thanks again to Kate Swaffer http://www.kateswaffer.com for sharing Damien's post.

Damien Murphy, on a recent blog post at "Working Towards a Dementia Friendly World" talks about the imbalance of support for those with Dementia/ Alzheimer's vs support for their caregivers. 

I am reprinting part of it here, you can click through to the entire post using the link below.

Damien notes that Caregivers are given a lot of advice and support while the PWD/A (Person with Dementita/ Alzheimer's) is often not coached in what to expect of the diagnosis/ disease and/or how to deal with it.

Seeing Demien's suggestions for what advice/ warnings might be given to a PWD/A made me revisit many of the things I "did" to Gregory with or without realizing. It also showed me those things I was careful NOT to "do to" him.

While my first thought was "it was done with love" (which made me feel better) and my next thought was  "it is only human nature" (which it is,) I realized that with better education of BOTH PARTIES involved in this Roller Coaster Ride, a better quality of life could be achieved. 

Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.

They might answer the question you're about to answer.

They might talk over you

They might point out your mistakes

They might correct you

They might talk about to others when you’re there.

They might speak too quickly for you

They might interrupt you in full flow

They might dismiss what you say as untrue or false.

They may patronise you.

They may frequently undermine you

They may expose you to failure just to show others they’re right.

They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.

They may control you

They may disempower you.

They may blame you for your dementia

They may tell you off

They may treat you as ‘full blown’ from the moment of diagnosis.

They may hide things from you.

They may contradict you

They may try to rip you off or deceive you

They may ignore you.

They may take away your independence.

They will frequently test you

They may exclude you

They may shout scream or cry.

They may humiliate you or make you feel a burden, when offloading about how stressed they are.

Read the full article by clicking here.

The Getting Dressed Incident

We now have two companions who spend time with Gregory and that does make it easier for me to have some time to myself and to get away to meetings etc. Companions present their own problems and more work with scheduling, training, solving minor issues via text or phone, having a stranger in your home, trusting someone else to do the job that in your heart you feel only you can do but learning to "get over it."

Living with him continues to be difficult as I continue to try to learn how (after 35 years, can you imagine?)

Yesterday we were getting ready to go to a party and I thought I solved his "Getting Dressed Dilemma" problem by picking out what he would wear and laying it out on the bed (in the order one would put the clothes on.) My fatal mistake was not taking the blue jeans and shirt he was wearing from him when he took them off.

He got "Shirt Confused" and "Pants Frustrated." After taking his current clothes off, he put his new shirt and his black jeans on. Tried to put his blue jeans on over the black ones several times. (I just waited.) Then he took off his shirt. Tried the blue/black combination again bear chested but that didn't help. I finally had to help walk him through the "Clothing Sequence" and then we entered the "Black Sox and Shoes Zone."

I won't go into further detail but we finally did get dressed, left for the party, at which he and I had a great time. This morning he did his own "Thin Thin" (our version of toast) and is now reading the New York Times (a new "Technology" since his computer skills are all but gone," waiting while I have a cup of coffee, do e-mail and begin our "Sunday Oatmeal Ritual."