2. 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.




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.

Prepping for a Family Visit

KidswithparentsSummer is filled with family visits. A clever girlfriend termed these visits “oblivations” since for some, these visits don’t quite feel like a vacation, but require both the planning and money of one. This summer might be the time when you start to notice subtle changes in a loved one, or a time when you are planning to connect with a loved one who is living with dementia.

In terms of the practical visit, a few go-to strategies include:

  1. Arrive with a smile on your face, and calm in your soul. I found my parents fed off of my emotions. When I arrived rushed and task-oriented, the visits generally went very poorly. When I arrived with the mind-set of being in the moment, we had a great time. I realized that my parents would reflect the emotion I walked into the room with and would take time to reset before every visit.
  2. Be prepared to carry the conversation. Typically, short-term memory is one of the first things to falter. Asking about what they ate for breakfast, did yesterday, or even current events might be challenging for them to answer. I would arrive with pictures, a puzzle, and a few stories I could share. When my parents did talk, I would actively listen and join in the journey. I didn’t always do this, early on, I would correct the story or challenge the memory, and even use the word “remember”. While we grew up being able to discuss things and challenge ideas, doing this around my parents after the dementia was diagnosed turned into heated arguments. Even a soft suggestion to “remember” often made my mother anxious because she did not remember. When they spoke, I would stop talking and actively listen.
  3. Learn to hit the reset button. This applied to both my own attitude and my parents. Some days, getting the same question, or having my mom pick the same fight over and over were too much. When I started to loose my patience, I would excuse myself to visit the restroom, grab a soda, or return a phone call. The mini-breaks allowed me to reset my own emotions. Some days, I used the reset tactics to redirect my parents too. Often after I took a break, I would suggest we change location or start a new activity to help get the conversation off the topic that was creating anxiety for one or both of us.

My kids were helpful and willing foils for many of my visits. For about a year, my daughter was a trained wingman who would reset any issue just by being a 10-year old silly distraction. My son would quietly engage with my dad and I still giggle when I think about the time he unwittingly got my dad to return a 1.75 liter bottle of vodka just by asking “Pop-pop, you want that huge bottle of vodka?” My son had no idea I was already plotting on how to get it out of the shopping cart.

Eventually, for both parents, we got to a stage when I recognized it was too difficult for my kids to handle. I wanted my kids to understand what was happening and why it was important that I was there to help them. I knew my parents treasured every visit, but eventually I recognized that my parents in a moderate stage of dementia might be the only memories left of “nana” and “pop-pop” my kids would retain. Thankfully, my husband and I have shared many stories of good times with my parents, and they have gotten to hear my siblings and I endlessly revisit some of the classic family tales.

We all have a different journey and I hope some of these tips will help you. Suggested. 

It’s YOUR turn to visit!

fingerpointAs the primary family caregiver, I will fess up to thinking and possibly even saying this to my siblings. I know when they visit, I have usually taken the opportunity to escape from the day-to-day and ongoing management of mom. It’s freeing to know that someone else is in town to run down an issue with the nurse or could drive over if something needed to be addressed immediately. I couldn’t even begin to count the amount of times I have visited mom on my own. When my siblings visit, I have used it as an opportunity to take a mini-break from caregiving.

However, what I learned on my sisters visit, was that going with my sibling was a way to reconnect with mom and my sibling. Not only did we have a great visit with mom, we had a great visit with each other.

Thank you to Belledelettres who commented that instead of  “it’s your turn to visit” we should think instead “let’s go and visit together”. Just maybe, they will visit more often. Wondered.

The simple gift of companionship

kayandkittyChristmas is a sacred family holiday to me so I headed out to visit my mom late this morning. Because of her wheelchair, bringing her to our house filled with stairs isn’t an option. I wanted to deliver some presents and see if I could get her interested in doing jigsaw puzzles again. She was asleep for the first hour but finally awoke and was hungry. She skipped the turkey and mashed potatoes and went right for the cake.

After eating , she opened up her gifts and was appreciative of the new pajama’s, sweater and pants. After the gifts we sat and worked on a puzzle for a while. I had already set it up and turned over all the pieces and organized clusters of colors. She dove right in and finished up the border. After about an hour, she asked if she could put her head down.

After she gets in bed she tells me “Thank you for making me feel human.” Sometimes I forget how important the emotions are to someone in a moderate stage of dementia. Today, we just hung out. She’s different on every visit, but today, the gift of a nice visit was mine. Received. 

When a visit with mom goes bad – Is it me or is it her?

pushI had a terrible visit with my Mom. Things had been going so well and while I was saddened by her decline and inability to remember me, she has been pleasant to me for several months. It made me wonder, was it me, was it her, or a little of both?

She was happy to see me, but started to get contentious over the ice cubes, her laundry, the trash can liner. When I told her I started a load of laundry when she was finishing up her BINGO game, she challenged that I would be so “presumptuous” as to take her laundry and put it in the washing machine. When I told her it was in the laundry basket, she backed down. When she wanted ice cubes and there weren’t any in the freezer, she wanted to know why I took all of the ice cubes. When she saw trash in the garbage can without a liner, she wanted to know why I put trash in the can without a liner. I hadn’t done any of those things, but had simply arrived and started a load of knowing we could finish doing it together.

I recognize how frustrating this disease must be to the sufferer. My Mom has always been independent and resourceful and now she needs help. She doesn’t like it — I know I might not do so well under the same circumstances.

I marvel at her ability to easily and succinctly chide me for a perceived wrong and then be unable to finish a sentence when we are chatting about the family.

As I was leaving, I wondered if somehow, she could feel my frustration today. I thought I left my worries at the door, but did I somehow move too fast or rush her through a task that just made her mad. I remember something Bob DeMarco wrote about his mother Dotty who would say “No Push, Push” when the pace of activity was too rapid for her to process. Had I moved too fast today?

Lurking in the back of my mind, I wonder if she forgets I’m her daughter and just thinks I’m messing in business that isn’t mine to manage. Contemplated.

Managing a Visit with Someone Who Has Dementia

dosdon'tsDementia changes people in different ways, but there are a few things I found that will make a visit with an old friend easier to manage. My Dad was quieter, but my Mom is feistier.

Research has confirmed that dementia doesn’t magnify traits, but in general can create wholesale personality changes. Don’t be surprised to find the person you are visiting is different than you remember. I hope you will continue to visit, dementia is isolating to those suffering from this disease.


  1. Begin with introductions. With a warm smile and relaxed posture, share a personal connection. Some suggestions that are helpful: “Hi FRIEND, It’s good to see you. You were one of the first people to welcome me into this community and it’s been a while since I’ve seen you”  or “Hi FRIEND. It’s a pleasure to see you today. I was thinking about all the fun we had when we lived in Germany together — that was over 40 years ago! Our children played together so well.”
  2. Bring pictures. It will help your friend understand your connection better if you can share pictures of you together.
  3. Speak slowly, simply and pause to allow them to talk. Some individuals will feed off of your energy so focus on being relaxed and calm. Eye contact and direct interest is important.


  1. Ask what they are up to or any short-term memory questions.  Short-term memory is the first to go and can set off emotions from frustration to anger and sadness if they are unable to answer the question.
  2. Expect them to “remember”. Be prepared to carry on a one-sided conversation.
  3. Correct jumbled memories. Allow your friend to share. Feel free to share how you remembered something, but don’t try to correct or debate facts.
  4. Show up with an agenda of what you are going to accomplish. Most people are lonely and want to enjoy the company and some conversation. Trying to get agreement or push on a topic can often lead to stress in the person with dementia.

The last don’t has been a new item for me. With my father gone, the normal routine we had has also left and now my Mom prefers to spend our time together reviewing her calendar or burial plans. We will discuss the day of the week over and over for a half hour, move onto the burial date and then go right back into the day of the week. I arrive knowing there is no agenda, and can easily sit with her with a smile on my face and calmly answer the same questions over and over until she feels more comfortable. This too will pass. Relaxed. 

Here is a post that made me consider this topic. I’m frustrated that more people don’t use the umbrella term of “dementia” but it includes some good information in a longer format that you may find useful.

Tips for Visiting a Friend with Alzheimer’s Huff Post, October 7,
 Originally shared by MomandDadCare