This is a deeper dive into the sixth item from my list of things to never say to a person diagnosed with dementia. This one is a bruiser–and I watched it happen so many times by people that are trained to care with individuals who have dementia, that it shocked me every time.
Most often, issues come up in a medical setting. Early on, when we would visit a doctor, I would bring a note explaining my mom or dad’s diagnosis because MOST DOCTORS DON’T READ THE MEDICAL RECORDS. I would confirm with the person doing the intake that they got the note so I never needed to say in front of my parents that they had been diagnosed with “multi-infarct dementia” or “Alzheimer’s”. Before I adopted this tactic, my parents would respond with disbelief and anger which created a whole cycle of inquisition by my parent who never recognized or absorbed their diagnosis.
Unfortunately, when the doctor arrived, they would turn to ask me questions as if my parent wasn’t there. I would immediately turn to my mom or dad to see if they wanted to answer. They would usually say they had nothing to share and I would then offer up a response. I know that the doctor’s don’t have much time to be with the patient, but this is something that for humanity sake, really shouldn’t be rushed.
The worst was when it was done by the family. I understood they don’t know what they don’t know, but you could watch the family visit go sideways almost without fail when it happened.While they might not be able to navigate a conversation about even the weather, at our core, we recognize being slighted. It must be one of the most basic human qualities that helps keep us alive.
When we visited with our parents, my siblings (or my kids) and I would always include them in the conversation, even thought we might be carrying on the entire conversation.
There were several times when I would want to talk to my mom’s personal care assistant about something and I never did it in front of my mom. We would meet outside of her room, or take a quick walk together.
As the person with dementia is losing the ability to remember or even navigate their day, the thing that needs to remain is their sense of worth and that element of them survives all the way to the end. Witnessed.
We had a new carer last week who asked me: ‘does she need help in the bathroom’. Maureen stayed in there for a long time and I gave the carer an ‘early bath’ as they say in football.
Good advice to respect those who are afflicted and let them keep their dignity intact, thanks.
I saw it every day for four years by all the “care” staff in the facility in which my mother was imprisoned.
So awful.😿
It was. Really, really awful. Mom died on Wednesday. I will miss her, but I’m glad she is free.
I understand. And agree Shea now free.
So true x x
Well said, Kay. And I do believe the essence of the person remains right to the end. Sometimes people (unfortunately very often that includes nurses) see the condition rather than the person who has the condition.
Well, this hit me to the core, and I thank you for the post and your blog. My mom was diagnosed with dementia almost 2 years ago now. She’s as feisty at 92 as she was at 62 – actually, probably feistier. She resents anyone helping her in ANY way, even though she is unable to shower/dress herself/tell time, etc. It’s a battle and most of the caregivers in her Assisted Living place are kind and wonderful to her (even though she yells at them all the time). I agree, we must treat our loved ones with this horrid disease with respect and dignity. But we must also appreciate and understand the amazing (difficult) work of our loved ones’ caregivers. I’ve been sending flowers and chocolates every once in a while to the staff. They deserve it.
This sounds so familiar. Statements made in my consultation; ‘And how has he been?’ ‘Have you tried this with him?’ ‘We could give him this for depression!’
He turned to me, with a flat smile asked, ‘And how are you in yourself?’ He turned and started typing his notes..
I wanted to say… f…ing brilliant, but he didn’t want any answer.
I did have a nurse that used to to see me. I said I want, no needed, to talk. She never came on time and when she did, she would continually interact with her phone, text and calling, saying just a minute!
I told her not to come again. She told the doctor I was ok.
My experience is, I have dementia and that means I have lost my humanity!
Sorry to hear this, but I see it too often. Would you be comfortable telling them (doctor, caregiver) that you have been diagnosed with dementia and are able to participate in conversations, recognize poor treatment, and advocate for many of your needs and need to be included in care conversations?
Good Morning and sorry for delay in replying, but it takes awhile to write it and check before I send. The doctor and nurse I’m talking about, are the Dementia Clinic staff. I cannot talk quick enough and this seems to be taken as, I don’t understand. My son and/or daughter always go with me and know me better than anyone and have to talk for me, but that is ok. They do to to me and over me. I get the same often just being in my wheelchair. People are just people. I don’t get out now, and I’m reluctant to spend time at the clinic. There isn’t anything anyone can do, so I have to do it myself and that is why I’m here. Many thanks for taking the time to reply, the first, but hoping not the last. You comment made a big difference!
I will then make sure to layer in and consider how to better speak to this in future blog posts. I know it took me time to adjust and when we are focused on moving quickly,
recognition of your needs gets lost in the shuffle. Glad to hear your kids are engaged. Thanks for writing!