“What is the best way for a family to deal with the parent who has dementia?” someone asked me on Quora. Tough question. I continue to learn new things every single day on this journey; it would take hundreds of posts to share it all (I’m working on them!).
My top five best pieces of advice to that Quora questioner on that particular night were:
1 ) open your eyes
Reject the myth that you are losing the person; the person at their core remains until her/his spirit leaves the body when s/he dies. I wrote a poem about some of that here: i see you, i love you, i miss you, and there are some hands-on/practical ideas here: 7 ways to honour living and dying with dementia. Knowing that person is still there will save you needless grief, loss and pain. And the truth is they ARE still there.
2 ) be respectful
Treat the person who is living with dementia with the respect they deserve as your parent, spouse, sibling; do not condescend or infantalize them. They are still there and they have the same rights and freedoms you do. See more here: The 12 tenets of the Dementia Bill of Rights. The more respectful you are, even if it’s in the face of verbal abuse that comes from the disease, the better you will feel about yourself, and the better you feel about yourself the better you will feel about them, and…(you see where I’m going with this?)
3 ) ask good questions
If and when s/he doesn’t recognize you anymore ask yourself important questions before you decide it isn’t important to see or visit s/he any more. Here are some starters to get you thinking: 20 great questions to ask when a loved one with dementia doesn’t recognize you anymore. Do not, I repeat: DO NOT, let yourself fall into the trap of the ego that says it’s important for them to recognize you. What is important is for them to feel love. And they will if you love them regardless of whether they know your face, which they probably do BTW, or remember your name.
4 ) put yourself in their shoes
Do not ascribe behaviours to the disease that are in fact natural and normal responses to the environment and the way we mistakenly treat people who have dementia. More on that here: 29 normal behaviours you could be sedated for. Ask yourself what you would do if you had to a walk a mile in their shoes. And I highly recommend you take this survey.
5 ) ask more good questions
If your parent with dementia becomes aggressive, anxious and/or impatient, ask yourself why that might be. Here are some questions I asked myself that helped me to be a better caregiver to my care partner: 20 questions that help explain why people with dementia get agitated and physically aggressive (See more about asking good questions in my blog post 20 questions for better care on The Caregiver Network).
These may seem to be focused on the person on the receiving end of your care, and to a certain degree they are. BUT, and it’s a big BUT, I learned from experience that the easier it is on them, the easier it is on us. And as care partners, we need to make sure we aren’t drowning in frustration, anxiety, and hopelessness, because when that happens there’s often no one there to save our souls.
Do you have tips to share based on your experience? Feel free to share in the comments.
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My Alzheimer's Story 