“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 
Thanks for this Susan – I needed a reminder. Can I reblog it please?
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Paul, thanks for the feedback. Re-blogging is different on WordPress.org, where I am, than is on WordPress.com, which is where you are.
When you re-blog on WordPress.com it’s a matter of clicking the button and then a small portion of the post appears on your blog with a link to the rest of the post on the original bloggers blog. That doesn’t happen with WordPress.org, which is where I am. So, what I suggest you do when you want to “re-blog” one of my posts is, rather than copying and pasting the whole post, to copy the first bit, and then create a link back to the original post here. So in this case, it would look something like this on your blog:
““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.
Read more here: https://myalzheimersstory.com/2016/08/15/5-psyche-saving-tips-for-dementia-care-partners/”
Would that work for you? And then you don’t have to asked me about re-blogging, you can just go ahead and do it.
I get really frustrated and angry, when I find my articles, which often take a lot of research, thought, and work to produce, posted somewhere else on the Internet with no credit, no links, Etc. Basically, this is theft. The re-blog function on WordPress.com gets around that by sharing only a portion of the re-blog blog and then linking back to the original. As I said, WordPress.org doesn’t have that functionality.
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P.S. I’ve even had my own original content emailed to me by people I don’t know, word for word, and presented as their own! I really see red when that happens I can tell you…
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Dear Susan,
I am a huge fan and can’t stop talking about the BANGS! This is such a simple yet powerful tool for caregivers. I am an RN at a Homecare company and with your permission would like to make a card to hand out to the caregivers and family members with your name, of course. It occurred to me that you may have this tool to purchase, which I would be happy to do, but can’t seem to find this in print anywhere except for in your article.
Please advise.
Respectfully yours,
Teresa
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great to speak with you on the phone Teresa, and I hope we can do something together!
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As usual great thoughts and ideas. It has certainly taken me time to learn to chill and be guided by what Mum or John want. I found that so much easier and a best quality of life for them. I have found that they know what they want and both have hated being told what to do by the caregivers. This is where I find my role becomes an advocate for them. I explain to the caregivers that they will find their job a lot easier if they approach things in a calm way so that person feels they are making the choice. I do find a lack of understanding when I hear people saying ‘it’s like dealing with a child’. Rubbish you are dealing with an adult and they need to be treated with dignity and respect.
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