Dr. Richard Taylor who lives with dementia was diagnosed with esophageal cancer. He underwent surgery, chemotherapy, and radiation. “Going under” was an experience that taught him a lot, most importantly, to never repeat the experience.
Dr. Richard Taylor’s TIPS on How to keep from going under forever
- Never-ever, send someone living with the symptoms of dementia to the hospital by themselves – don’t trust first responders to know anything about dementia.
- Never-ever, leave anyone living with the symptoms of dementia alone in the hospital.
- Speak with your local first responders, emergency room staff, nursing staff about what it is like to live with the symptoms of dementia.
- Bring 7 copies of [your loved one’s] current drug list with you to the hospital. Give one to the head nurse of each nursing shift (including weekends), ER head nurse, and any and every doctor who will take the time to read it. Include a brief summary of the major disabilities [your loved one is] living with growing out of [his/her] dementia. Bring 3 copies of your medical power of attorney and keep one with you all the time you are in the hospital or a doctor’s office.
Place this nametag on your care recipient, the bed, the wall of the room, the door, and the bathroom door:
Hello, I am [name] and I am living with the symptoms and disabilities of dementia. I require your best empathetic listening skills and a little bit more of your time.- Place this on the bathroom door in [your loved one’s] room:
Please don’t bother asking me what day it is, who is the president. I need to live in and understand what has happened, is happening, and will happen to me. - Ask me to repeat what you just told me.
- Always introduce yourself and explain why you are here and what you are going to do to me.
- Pretend I’m your favorite grandfather/grandmother. Ask me about family in the room, my grandchildren, my friends and hobbies, what I accomplished today. What I will do tomorrow.
Please, please help me stay in and understand this moment and today.
“The single biggest problem in communication is the illusion that it has taken place.”
– George Bernard Shaw
For more information about Dr. Richard Taylor and Alzheimer’s insights “from the inside out,” please visit his website at Richard Taylor PhD and sign up for his monthly newsletter for up-to-the-month information and candid commentary about Alzheimer’s disease.
TIPS edited in brackets to read from the caregiver’s point of view. (TCV Ed.)
Thank you, Richard for these tips. I wish I had known them when my mother was in the hospital (and rehab). One thing in particular that I found difficult was the fact that I could not be there every minute when she was in the hospital. I had a job and two young children. Most caregivers cannot be there every minute. So what do we do if we have no other family members to take a shift, or your parent with dementia has few friends remaining who can visit? As I write in my book “Inside the Dementia Epidemic: A Daughter’s Memoir,” I wish I had considered hiring private aides to stay with Mom in the hospital. Looking back, I think it would have been worth the expense–IF they could be counted on to understand dementia and speak up for Mom, and that’s a big IF. Most private aides do not get training in dementia care, and if they do, it’s not enough. At least if I had hired some private aides to sit with Mom I could have explained to them the most important things to watch out for. For example, to make sure that Mom didn’t try to get out of bed with her fractured pelvis (which she did, despite a personal alarm), and that the nurses aides treated Mom gently when they turned her and cleaned her.
Thank YOU, Martha for sharing your thoughts about how caring for your mom could have been better.
It’s amazing isn’t it? We learn what we could have done differently after taking all the steps caring for our loved ones.
Hopefully, somewhere within the pages of your book, caregivers will inherit the wisdom you gained.
To learn more about Martha’s book, visit this link for The Caregiver’s Voice REVIEW
Oh wow I love this! 4 trips to the ER with my loved one and I felt like I was a teacher. The first trip the doctor had no idea how to understand the English language. I had to explain to her, with her constant interupptions, what Parkinson’s and Lewy Body dementia is. That was when my loved one had vertigo and the doctor kept asking stupid questions. On the last visti the doctor had no clue what Lewy Body dementia is. When I explained it to her she responded, “Oh I guess I should read up about that” I keep my loved one out of the ER anymore. I do what Nurses and a support group have taught me. Of course if it’s something serious like the last visit, I go to the ER by calling 9-11. This was a sad case. LO had a fall and was complaining about chest pains. Called 9-11 and the Paramedics recommended going to the ER to rule out anything. Of course after laying there waiting for attention for 40 minutes they finally decided to do xrays to rule out any injury. 3 hours later and after some ratther heated discussions with a doctor, we came home. Tylenol did the trick. Nope, I will stay out of the ER and I thank you Dr Taylor for making everyone aware.
Don, thank YOU for sharing this experience.
Yes, although our doctors are overworked it’s important for them to understand when someone arrives with dementia to the emergency room.
This is why the Purple Angel dementia awareness program co-initiated by Norrms Mc Namara in the UK and carried forth in Florida (and soon beyond) by Gary LeBlanc is so important–for just this reason.
Instead of having to educate your doctor who didn’t seem to listen anyway, you could be using your energy to comfort Marie.
Dr. Richard Taylor is a superb resource for all of us–outspoken, well-researched, and candid about his experience.