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Don’t talk about someone with dementia in front of them like they don’t exist.

brunchwithmom

My sister and I sit across from our mom and keep the conversation going.

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. 

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Don’t think they can’t communicate just because they don’t speak.

fingerpokeThis is the fifth item from my list of things to never say to a person diagnosed with dementia.

The story that immediately pops to mind happened a little over a year ago. I hadn’t met very many individuals with dementia who had stopped speaking until my mom moved into a memory care community. While I had experienced periods with my parents when one of them would be quiet on a visit and they seemed unsure of what to say, they never stopped speaking until the last few days of their lives. So I had more direct experience with my last post on don’t assume they can’t understand you because they are silent.

I still smile when I remember my visits when Gwen would join us. She would only join us when we were sitting off to ourselves, and usually focused on a craft of some sort. She always had a relaxed way about her, but always seem to want to hide the things we were working with. She would subtly remove a paint brush, or a feather, and seemed to wait to see if anyone noticed. I was glad we used non-toxic paint when she decided to drink my cup of paint water on the table before I could stop her.She looked right in my eyes and grinned before I could get out a word. She never did want to join us in our activity, but every time she joined us, I felt like a little bit of my dad had arrived. He was always the jokester.

One day, when another resident came over to join us, Gwen stuck out her finger so that when the other resident sat down, she would get a poke to the rear. While the resident didn’t notice, Gwen burst out into giggles and I quickly joined her when I found the resident wasn’t harmed or offended (thankfully).

I never really thought about it at the time, but looking back realize how much I had learned about spending time with someone who has dementia. I was ready to accept and visit the person that was showing up to spend time with me that day. Although, I never had a conversation with Gwen, we sure did have a few laughs together. Enjoyed. 

 

 

 

 

 

 

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Don’t assume they can’t understand you because they are silent.

silencehis is the fourth of my list of things to never say to a person diagnosed with dementia.

Early on, before we had a diagnosis but recognized something was wrong, I would try to over-explain things. This would only make my mom more talkative as she tried to ask questions but usually the conversation would get jumbled up and veer off in an unusual direction.

My dad on the other hand got silent. Whether it was because he didn’t want to talk, wasn’t sure what to say, or had no interest, I will never know. What I did find was that when my mom would start questioning him, he would just go silent. We initially thought our dad was depressed, and most likely he was, but he was also in the early stages of Alzheimer’s when we first noticed his silence.

Later, my dad got into the habit of saying “It’s a nothing-burger” when I raised something he didn’t want to deal with and to my mom would just reply “I don’t know” to defuse her rapidly escalating anxiety.

What I would realize after a few months of pure frustration on my part was that my dad did understand, did know the answer, but just didn’t want to discuss the matter.

I carried this knowledge with me through my mom’s move into a memory care community. There were quite a few silent residents who would respond with a smile at a simple “Hello” or would immediately come join you when invited to sit outside on a park bench. Even through my mom could talk, she started to talk less. It felt like she was feeling less sure of the words coming out of her mouth. Some days, she would be up for a lively conversation, and others, she would just wait until I shared another story.

Some much of what you learn is to see and respond to the person in front of you today. What my mom liked last year, or even yesterday, may not be something she cares for today. I was never one to find silence uncomfortable, so sitting outside with mom and just enjoying our surroundings became one of my treasured activities. Some days, I can still imagine she is right by my side when I close my eyes. Treasured.

 

 

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Don’t correct or challenge trivial things.

trivialThis is the third item from my list of things to never say to a person diagnosed with dementia. It took some time for me to learn this and I feel like its a partner to tip #2 to not say “remember” — they go together.

I recognize this “don’t” is sadly one of my righteous habits. I know that it has softened over time but growing up in a smarty-pants family where debate was encouraged, we got in the habit of pulling apart arguments plank by plank.

When mom and dad were driving, forgetting to pay bills, and calling me over-and-over to ask the same questions like “what day is it?”, I thought pointing these things out as a failing would help them finally sell their town home and move into the retirement community full time. Oddly enough, they recognized that their spouse was doing poorly, but never recognize a weakness in their own abilities.

What my behavior did was to create distrust with my parents. Generally, my mom would become argumentative, and my dad would shut down.

I realized that I had to change because my parents were unable to recognize what was happening and therefore unwilling to make any changes to their lives.

What I didn’t know then, and still would not have accepted, was that I would have to wait for something to happen to force a change. When dad broke his hip, required surgery, spent several days in the hospital, and weeks in rehab, I was able to learn a lot more about how much help my mom really needed on a day-to-day basis. It also gave me time to collect more information on their finances and their medical history so in the future I could be a better advocate.

I started from the place I knew and within that familiar dialogue I had with my parents as their adult child. However, with their dementia, logic was not logical to them, they were recreating their memory because they didn’t remember. My habit of debating matters, especially when it came to the little things, only made the road more difficult for all of us. Experienced.

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Don’t say “Remember when … “

rememberHave you ever had a friend say “Remember when …” and you have NO idea or recollection of what they just recalled? We can usually giggle about it with our friends. I have to say the worst are the times when my husband will say “remember when we … ” and my only response is “ummm, I think you did that with one of your girlfriends” and there is probably a little edge of jealously in my response.  After close to 20 years of marriage and several years dating before that, those stories don’t happen as much anymore, thankfully.

However, in some ways when we are talking to someone with dementia, the use of “remember when …” and “remember” is perceived differently since more often than not the person you are asking cannot remember. When someone asks me if I “remember” and I don’t, a little panic button goes off in my brain. How might that feel if you no longer have the ability to retrieve information and this happens to you all day long? When I started to consider that, I could easily understand why some discussions with mom ended up with her feeling anxious.

When I first heard the advice to avoid the use of “remember”, I realized I was using it more often to correct my parents or point out poor decision (see the list of 20 things to NOT say to someone with dementia). I was understanding they could no longer remember, but not really practiced at how to spend time with them. At first, I was trying to get them to recognize that they could not remember, which they never did and is very common. For more insight into this, read the blog on anosognosia.

Some recurring instances included:

  • After we would order dinner at a restaurant and the waiter took the menus, my dad would complain about the lack of service — I changed what I used to say which was “Remember dad, we already ordered”, to “Oh, I heard that chicken dish you ordered is very good, and I can’t wait to get the fried tomato appetizer.”
  • After my mom finished off  a box of peanut brittle and wanted to open up another box for dessert, while I used to say “You already ate half of box,” I would instead get up telling her that I was going to see if there was more and return with a cup of tea and a new subject.

In many ways, I was using “remember” to point out bad behavior or convince my parents that their decision was poor and to illustrate why they needed to let me help. It was really having the opposite effect. When I learned how to change my responses, I found my visits with my parents went much better.

I started to show up to visits with pictures, so while I shared a story and used someone’s name, I would point to the person in the picture. I did it to help enrich the story.

Recently, I read a news article where a caregiver would take pictures on her smart phone to show her mom that she had already enjoyed ice cream. With my mom, I know that would have made her unhappy. She would recognize that she didn’t remember it and suddenly, I became the buzz kill. What works with one person with dementia, doesn’t work with everyone. No matter how you choose to visit and spend time with them, think less about what not to say, and maybe think more about how what you say makes them feel. To someone who is lost their ability to “remember”, it might not be a good term to have in your vocabulary. Reminded.

 

 

 

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Don’t tell someone diagnosed with dementia they are wrong.

doingitwrongNo one likes to be wrong. Before my mom was diagnosed with dementia, but after she had a small stroke that she never remembered, we began to get into arguments. My parents and I had a close relationship and saw each other 2 – 3 times a week. My mom and I didn’t normally get into disagreements once I moved out from under their roof.

Even before mom’s stroke that left no physical reminders and that the neurologist judged to be quite minor, we noticed some changes in her behavior and recall. It turns out that mom had an earlier stroke that apparently went un-diagnosed as much as 2 decades prior to the stroke we knew about. It’s not like didn’t see a doctor– every year she and my dad both had  comprehensive physicals. .

Dinner dates were getting missed, family history was changing, and initially I would challenge mom as I had in the past. I showed up for dinner on Tuesday, she said we were supposed to meet Thursday … our relationship degraded and I felt like I was 16 and re-enacting my teen-age years (yeah, I was right then too : >.) Some of our disagreements ended with her threatening to “pop me in the mouth.” My brother shared his experience with the same behaviors in a blog post from April 2012.

What we didn’t know then was that getting into these arguments usually made mom more combative. Who likes to be told they are wrong?  This was BEFORE our parents would consider changing their lifestyle. We were afraid for their safety and well-being. However, starting these fights only made my parents fight harder to keep their independence.

You won’t win the argument, so why fuel it? Reflected.

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20 Things to NOT Say to a Person with Dementia

20-things-not-to-say-to-aperson-with-dementia-updated-6june2014.jpgThis list comes from Kate Swaffer who after being diagnosed offers a fresh perspective on how to live beyond dementia rather than only die from it, and how family, friends and dementia care professionals can more positively support people post diagnosis to do this. She has lovingly challenged, advised, and counseled me quite a few times on my journey. We even launched a Q&A blog where we peppered each other with questions.

As a follow-up to my go-to strategies for family visits, I plucked a few key tips to consider and am listing my top ten:

  1. Don’t tell the person they are wrong.
  2. Don’t say “Remember when … “
  3. Don’t correct or challenge trivial things.
  4. Don’t assume they can’t understand you because they are silent.
  5. Don’t think they can’t communicate just because we can’t speak.
  6. Don’t talk about them to someone else in front of them.
  7. Don’t remind them of a death of a loved one or pet.
  8. Don’t blame them for the changes in their behavior.
  9. Don’t assume they can’t answer for themselves.
  10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

It is easy to read the list, but not as easy to make these part of your actions when you are visiting. I am going to share my individual experiences with each of these over the next month. It time for me to learn and I hope my mistakes will help you learn faster than I did!

Be mindful of the words you use, and forgive yourself when you make a mistake — just build on what you are learning. Recognize that the person diagnosed with dementia still has the same craving for meaning and purpose that is the core of every human.

The changes in behavior are not hidden personality traits. As the brain is changing, so is the person living with dementia. When you have met one person with dementia, you have met one person.

Thank you to Kate who continues to be a beacon of hope living with dementia working to provide us with inspiration, love and truth. Admired.

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