JOAN’S BLOG – THURSDAY, SEPTEMBER 30, 2010 – ADVICE FROM THE SOURCE – Caregiver Tips from PWD ( persons with dementia)

There are hundreds, if not thousands, of caregiver books written by “experts” – psychologists, doctors, and social workers. In the resource section of this website (left side), there are caregiver tips written by the real “experts” in the field – our members. Today I give you caregiver tips written by another group of “experts” – those with dementia.

Our support group is divided into two parts – caregivers and those with memory loss. The memory loss group worked with their social worker to devise a list of caregiver tips they feel are most important to their own well being. They came up with these ideas on their own, based upon their experiences and what frustrates and angers them about US, their spousal caregivers. Here is their list. My commentary is at the end.

Things NOT to say to your loved one with memory loss:

• How many times do I have to tell you that?
• I’ve already told you before.
• Don’t be so stupid.
• Don’t act so stupid.
• Don’t act so childish.
• Leave that alone.
• Can’t you do anything right?
• You make me so mad.
• You make me want to cry.
• There’s no sense in you acting this way!
• Hurry up!
• That outfit looks terrible on you.
• NO!
• Stop doing that.
• Do it NOW. 

Words of Advice From Those With Memory Loss:

• Don’t tell us we are wrong.
• Don’t argue with us – it will make matters worse.
• Try to change the subject when we are mad.
• Don’t raise your voice.
• Don’t change things around the house.
• Live for the moment
• If people don’t accept me, that’s THEIR problem.
• If there is something you would like to know, ASK US.
• If we have a question, we want it answered.
• Remember, “We are not doing it on purpose.”
• Think about the GOOD things.
• Don’t rush us.
• You have to be patient.
• Stay away from the “crummy” things.
• Pick your battles.
• “DUCK!”
• Don’t give up.

Some of these suggestions may frustrate and anger US, but we need to remember they are written from the perspective of those who have been diagnosed with various forms of dementia. Therefore, they are totally self-centered, with no regard for our feelings or stress. It reinforces the most important fact about being an Alzheimer Spouse caregiver – that WE have to change and adapt, because our spouses’ illness makes it impossible for them to do so. Common sense tells us not to be insulting and condescending by calling them stupid and childish. However, in the self centered world of dementia, the PWD has no idea how difficult, stressful, and anxiety ridden it is for us to always be patient, not rush them, not raise our voice, not argue with them.   

After reading the lists, it occurred to me that we CAREGIVERS should get together with our social worker and make a list of suggestions our spouses can follow to make OUR lives easier. Then I came to my senses, realizing that even if we made such a record and discussed it with our spouses, it would be futile. They would never remember any of it.

The purpose of the suggestions was to enlighten me as to my AD spouse’s needs. Maybe I was in a bad mood that day. Maybe I was in my own selfish mode. Whatever the case, enlightenment was not my first reaction. Instead, I was annoyed and frustrated at being reminded that it all falls on ME to adapt to his needs, and there is no one to adapt to mine. And some days I am just tired of it.

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©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved
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