“If you change the way you look at things, the things you look at change.” – Dr. Wayne Dyer.
During a trip to Cape Town, South Africa, I enjoyed the experience of parasailing off Table Mountain. Although, truth be told, I found the slow descent of parasailing much less thrilling than my sky diving adventure – it was still exciting.
I was able to view Cape Town from a totally different perspective. Rather than seeing a crowded city full of buildings that were prominent at street level, I was able to take in the beauty that surrounded it. The ocean, the mountains, and hills, and the dolphins playing, that were hidden by concrete changed the way I saw Cape Town.
“If you change the way you look at dementia, the people living with dementia will change.” – Laure’s version.
Last week, after speaking at the National Research Summit on Dementia Care, I was encouraged about how the perception of dementia is slowly starting to shift. People living with dementia were included in the program and many of the presentations incorporated the importance of including people living with dementia in decisions. Wow – this is the beginning of progress! The stigma of dementia and the way people look at dementia is starting to change!
, It’s time to re-image dementia from a different view and change the attitude from people dying of dementia to people living with dementia, from caregiver to care partner, and to focus on the individual’s abilities rather than their disabilities.
I’m not sure what dementia is supposed to look like. Although I have some really good moments when I feel like anything is possible, I also have moments when confusion and disorientation take control of my emotions, my actions and my body functions. Dementia doesn’t just happen over-night.Think of a beautiful tree all decorated with lots of new lights, ornaments and ribbons. One day one of the bulbs start to flicker. You tap it a little and it goes back on. Over time, another starts to flicker and another. Sometimes you can get them to come back on and sometimes they will not come back on.
So, you make adjustments to distract from the burnt-out lights. Move an ornament or add some tinsel to enhance the lights. All the while this is happening, your tree remains beautiful and brightens the room. People who don’t see your tree often or who visit during the day time may not notice the lights flickering or those that are totally off. But you know that in time all the lights will fade.
I have times when my lights flicker and some of those “bulbs” don’t want to come back on, for example with math.
For now, enough lights are still shinning that I can try to brighten the world. Physically I am strong and healthy. My husband Roy and I have found that I CAN do many things that I did before – I just have to do them differently. We try to find an adjustment to compensate for the flickering bulbs.
Sometimes people say “You don’t look like you have dementia.” and I’m thankful my lights aren’t flickering or that we’ve made the right adjustments. For now my tree stands tall, bright and beautiful. With routines and adjustments I able to live a beneficial, happy life. The day may come when all my light bulbs are dim, but for now, I
am thankful for all the days when I can be useful. As my husband reminds me, a Christmas tree is also beautiful during the day when the lights are off.
I am not the same Laurie I was, but with adjustments, planning and routines my lights can still sparkle.
There are many variations using the analogy of dementia being like a Christmas Tree. The first version I heard of this was written by a wonderful Dementia Advocate, Norm Mac – thanks for the inspirations Norms! I think this is such a great analogy that after writing it I put it into a video.
PREPARATION: Plan ahead as much and as many things as possible! Get to a conference one day early when possible!
AIRLINE PREPARATION:
When booking your airfare, opt-in for “Priority Boarding” when available.
Passengers with Priority Boarding are allowed to board the plane as a separate group from most passengers, usually, the first or second group called to board.
This may cost a few dollars more when you book your flight, but totally worth it to help reduce crowd-related anxiety and stress.
Beginning TWO weeks before your flight, request Special Services from both the airline and TSA (the airline website may say one week – that doesn’t always work out).
This is the single, biggest step you can take to make the airport experience easier.
There are multiple ways to make this request (online form, email, phone call); USE THEM ALL.
Be specific and explain how your symptoms make the airport difficult.
Ex. “My dementia affects the way I measure distances in such a way that attempting to use escalators is hazardous.”
Ex. “The symptoms of my dementia can cause me to easily get overwhelmed, confused, and disproportionately anxious in loud, busy, unfamiliar places.
The airline will make note of your request, and when you check your luggage, the employee will confirm what exact type of assistance you need.
At some airports, if you have a friend or loved one helping you, that person can get a pass that allows them to accompany you through TSA and all the way to the gate (that person will need to show I.D.). Check with the airline when you book your ticket or call TSA at that airport.
If you are alone, it is STRONGLY ADVISABLE to request a wheelchair assist. A second airline employee will wheel you from the luggage check all the way to your gate, including assisting you through the TSA checkpoint.
PACKING:
At least two weeks prior to travel:
Start making a list of everything you will need (you will probably add things up until the day of travel)
Put the list in some order (i.e. clothes, medications, etc.) There are apps available that can help you make and organize lists for example anylist.com.
Highlight items to distinguish Check-In or Carry-On.
Purchase Travel Bags
When packing there are two tips to help avoid confusion when in a strange place. Pack by outfit not by garment type – one outfit together rather than all pants together.
Pack each outfit in a separate travel bag (include undergarments, socks, etc.) – everything you need for that particular outfit. If you awake in the morning disoriented you will be thankful you don’t have to think about what to wear.
Place each complete outfit on a hanger that you can place directly in your closet.
Label the bag or hanger with when you are to wear it (i.e. Monday Day, Monday Night, etc.)
Medical Assistive Devices (such as a CPAP machine or Nebulizer) are not to be packed in your checked luggage.
They are given a special tag, identifying it as a medical device.
Items with a medical device tag do not count toward your carry-on allowance.
Medication is suggested to be added to your carry-on with a large enough supply to cover up to four days. If your luggage is lost, it could take some time to get medications filled.
Ear Plugs and/or headsets in your carry-on are extremely important to reduce noise and confusion.
Once you are sure all your wash is done and you are ready to start packing
Check mark items off your list as you put them in the luggage.
Keep your list and on the return trip check off items as they go back into your suitcase to make sure you are not leaving anything behind. Weigh your luggage and make sure you are within airline guidelines.
Identification, tickets, and “Please be patient with me I have dementia” cards should be kept where they are readily accessible. Consider a pouch that hangs around your neck and shoulder. It is easy to misplace this info when being herded through security.
You will need to show your I.D. and ticket at least twice (some airports three times). Once when checking in, then when going through TSA and some airports require it also at boarding.
Please Be Patient With Me I Have Dementia Cards – can really help you through the airline process and even on the plane. Use it.
Consider also keeping a Care Partners Phone Number with your ID. If you get confused this can help others know how to help you.
KEEP THESE HANDY UNTIL YOU ARE ON THE PLANE
AT THE AIRPORT:
Plan to arrive early – this will help reduce your stress if everything does not fall into place.
Let them know at check-in that you requested and need wheelchair assistance (see Airline Preparation notes).
Once you are at the gate
Let the gate attendant know that you will need early boarding (but perhaps not a wheelchair assist) and any special instructions (i.e. I can’t do escalators, or I may need a reminder to get on the plane)
Sit at the least crowded location near the gate you can find so you can escape some of the noise and confusion.
If you need the restroom – it is extremely easy to get turned around in an airport
Try to use the restroom closest to your gate (when possible)
Write down your gate number and keep it in the pouch with all your ID
If possible, have someone wait for you outside the restroom and hold all your belongings except your ID Pouch.
AT THE HOTEL:
Write down your Room Number on something that you will always keep with you. Room keys no longer list your room number. At the conference, consider writing your room number on the back of the name placard that you will keep around your neck.
Give the Hotel Manager your “Please Be Patient with Me” card and explain that you may get disoriented and confused.
Keep the contact information for a Care Partner on you.
When you get to your room – look for markers that can help you get back to your room. (i.e. near the statue or picture of “X” I turn left, at the escalator I turn right).
Become familiar with the hotel. Practice how to get to and from your room, the lobby, the conference, or any other gathering place.
Become acquainted with lower-traffic areas that may offer a quiet escape when needed.
Check for any potential safety concerns and try to avoid them. These may include over-busy wallpaper or carpet that causes balance distraction).
Keep your earplugs handy. Sometimes the motor of an escalator or blowing of a fan can cause confusion. You need to be able to block those out.
Today’s discussion is about people living with Dementia. This podcast explores unique topics related to dementia through conversations with physicians, experts, and community leaders—focusing on innovative ideas, practical strategies, and proven methods to create a supportive path for caregivers.
Perfect gifts for a loved one progressing with Dementia.
With the holidays rapidly approaching, our thoughts often stray towards “What is the perfect gift?” “What can I give my loved one who needs nothing?” Too often, we end up with the typical fallback items of pajamas, socks, a shawl, or slippers.
For a loved one who has progressing dementia or is elderly and wants/needs nothing, these items may be a nice gesture but will soon be lost or forgotten. Consider instead a gift that may spark a memory, create some engagement, provide a warm fuzzy feeling, or can be a friend. You could enhance their life by giving something therapeutic and engaging.
Here are some gifts that may bring a smile, encourage conversation, and/or provide comfort:
Tag a Photo – Take a current family photograph and write the names of each member across their picture. This may help reduce some frustration when your loved one can’t remember who the people are.
Engage conversation and memories with photos – Go through photos or photo albums and write the names on the front or back. Spend time sharing the photos and talking about the people, the event, the vacation or occasion that relates to the photos.
Buy a Twiddle and spend some play time together. Twiddles are a playful activity/comfort aide designed to keep hands and minds active and engaged, or soothed and calmed. You can purchase Twiddles on Amazon (https://www.amazon.com/stores/TWIDDLE/page/71F66E08-60E5-4608-8B33-EEF9340E83F3?ref_=ast_bln). Use Amazon Smile and you can also give a gift to a charity at no extra cost to you! Amazon sends a portion of proceeds to your charity – I recommend Dementia Action Alliance.
Bring some comfort through a companion – A soft & squishy stuffed animal or baby doll can provide a warm fuzzy feeling and something to cuddle. An animated dog or cat that barks/purrs, snores and rolls over can offer the warmth and enhance the sense of touch and hearing. These sounds can be soothing. Joy For All ( https://joyforall.com) has some lovely pets for adoption.
Memory Picture/Photo Phone – These phones make phone calls easier by clicking a photo rather than a name or phone number. There is a large selection of styles and most include hands free dialing as well.
Digital Day Clock – Large display digital clocks that show the Day, Date and Time are a wonderful aide to help maintain independence. They come in a variety of models and functions which include alarms and reminders.
Weighted Blanket or Shawl – Many people find that a weighted blanket or shawl can help reduce anxiety and provide a feeling of being cuddled and comforted.
Easy Remote – A variety of remote controls are available to simplify usage. This can be extremely helpful to reduce confusion.
Puzzles – Personalized puzzles with a family photo or specific memory
Personalized Memory Game – take the concentration game to a new level with a Personalized Memory Game! Enjoy a memory game and memories at the same time! A great way to spend time together and stimulate conversation and memories.
Drawings by children – have the children or grand-children, draw or color pictures and tape them to the wall. Children’s drawings always bring a smile!
Games & Activities – Search the internet for Games for Dementia – there are many activity books for people living with dementia
Gel Seat Cushion – As the amount of sitting increases as the amount of ability decreases, something “cushy for the tushy” is sure to soothe more than just the soul.
Guest Book Register Book – ask all guest to “sign-in” each time they come and review the guest book together
The most important gift is YOUR TIME. Make your gift special by including time to engage with your loved one to talk about photos, play games, color, sing or read together. Time is much more precious than slippers.
Wishing you all a holiday season filled with love & laughter!
Dementia does not define who I am. It is merely a small part of the many facets of my life, affecting decisions and changes in how I live.
I am Laurie Scherrer, and I am a wife, a writer, a SCUBA Diver, an educator, and an advocate. I’m a traveler and a speaker. Oh, and I am also living with dementia.
People that live with dementia should not be reduced to simply a diagnostic label pronounced by a doctor. Nor should they be stigmatized by a society that sees the diagnosis rather than individual abilities and identities.
Living with dementia does not automatically equal total memory loss, inability to make our own decisions, nor undeserving of living an independent life enriched with purpose, beauty, and fulfillment.
We are not defined solely by a label of dementia. As with most people, we are the cultivation of our upbringing, culture, spiritual fulfillment, lived experiences, accomplishments, failures, and our many challenges.
The medical profession and those in our communities often perceive us as incapable of contributing to any aspect of daily living. We are viewed as dying of dementia rather than LIVING WITH dementia. We are viewed as having limitations, which makes us feel worthless and incompetent.
Together, we will lift our voices to shout out that we are not a label and dementia does not define who we are. Together we can focus on our abilities, not our inabilities, and on how we can be of help to others and thus help ourselves.
It is estimated that 1 in 2 people in the U.S. have a chronic medical condition and 96% of these people live with an Invisible Disease (JP Thierry 2013).
An Invisible Disease is an umbrella term for a disease or condition that is not visibly noticeable – a hidden condition, which can cause severe pain, cognitive impairments, extreme fatigue, constant illnesses, depression, or a variety of other impairments.
Living with an invisible disorder often creates the added challenge of dealing with people’s perception of how one should look or act. The stigma of many invisible diseases leads to the misconception that one is, or should appear, feeble and unkempt, or unruly. When people do not fall into the perceived vision, their diagnosis and symptoms are often doubted by family, friends, and sometimes doctors.
Many who are challenged with an invisible disease still desire to live productive and beneficial lives in spite of their condition. This mind-set is frequently not accepted, and in some cases creates stress, which can aggravate symptoms.
My husband and I understand all too well this stigma and how much it can hurt. I am Laurie and I have dementia (early-onset Alzheimer’s and Fronto-Temporal Dementia). My husband, Roy, has an immune deficiency disease that prevents his body from producing anti-bodies (Common Variable Immune Deficiency). We both deal with conditions that usually are not readily apparent.
Together, we are Care Partners, Advocates for the Education and Awareness of Invisible Diseases as well as best friends. Together, we work to find strategies to help me maintain some of my independence and to avoid situations that may exacerbate my symptoms.
And we work together to avoid exposing him to conditions that may comprise his immune system – which has been very challenging with COVID! Together, we decided to celebrate our 40 Wedding Anniversary at home alone because it was the best way to shield both of our conditions.
Roy, Laurie, and Lil’Dawg
The Invisible Me – dementia is like a roller coaster. Thankfully, on most days, my cognitive abilities are pretty good. As long as I don’t have to do any kind of math, write a check or remember a lot of things, I can function independently.
Then there are the other days, like when I was lost coming out of the restroom at a restaurant and wandering down the street not knowing where I was. Or when I was lost on the boardwalk, unable to figure out how to use my cell phone. Or when I forgot how to make a bed, select clothing, or where the bathroom was in my own home. There are times I forget how to talk or walk. These are the “invisible me” times we try to shelter.
The Invisible Roy – four-hour infusions every Tuesday. Four years ago, Roy could not walk up our driveway without needing to sit down at least once. For the second year in a row, he had pneumonia three times. He was sick for 111 days that year. He slept about 15 hours per day. I was watching him fade away, and it was breaking me in half.
The doctors first blamed it on Crohn’s Disease, which was a 27-year misdiagnosis. Then it was suggested that perhaps he was depressed. Finally, I had enough and took him to Penn State Hershey, and the doctor’s found his true diagnosis. They were amazed that he even walked in the door because his anti-bodies were zero.
Now, every Tuesday, I “stab” Roy five times (it’s just a tiny little needle), and he sits through a 4 to 6-hour infusion of globulin to put anti-bodies into his body. Since anti-bodies fight the bad bacteria in the intestines and his body doesn’t make any anti-bodies, he struggles with bowel issues, especially in the morning, which has caused us to delay or miss many social engagements. He is often unable to leave the house in the morning, and he is sometimes overwhelmed with fatigue.
The InvisAble ME – YES, I am still ABLE to do many things. I choose to live my life focusing on my ABILITIES rather than my inabilities.
Since my dementia diagnosis, I have blossomed into an individual only God could have created. I am an International Speaker on Strategies for Living Well with Dementia, a blogger, a leader, a board member, and a dementia advocate. I have organized and/or hosted over 400 discussion groups for people living with dementia, had media presence with New York Times, AARP, PBS, South Africa Times, and many others. I am involved in scholarship fundraising, website overhaul, constituting manuals, co-editing training material, and much more. I AM LIVING – I AM ABLE to do many things.
The InvisAble Roy – it is afternoon, his morning “issues” are gone; I am watching Roy out the window now as he digs a ditch and hauls rock and dirt! I have watched him building the walls on our garage and build a floor in the attic. I still marvel over that beautiful physic! Boy is he strong and handsome! Six days a week, he is free to do as much as he can. It’s only Tuesday that he has limits because of the infusion pump. He still gets tired, but looking at him now, you wouldn’t know it.
We are both a product of an invisible disease. Looking at us today, as Roy works outside and I write this, you would most likely question our diagnosis – until you know the rest of the story.
We are a product of what we push ourselves to be and how we choose to think and live.
In this life, we all have the choice to make the most of every day regardless of what our visible or invisible conditions are. When the doctor says our days are numbered, we decide what we want those last days to reflect.
As for Roy & me, we will continue to make a positive impact in any way we can for as long as we can; to help others, to enjoy life, to accept people for their abilities, and to laugh. Hopefully, this is how we will be remembered.
In our world of dementia, I’ve learned that there are still so, so many things that we can do. We just have to do it different[ly]…
I mourn the fact that I can’t do a lot of things in life… So, a lot of mentoring is helping people to understand, ‘No you can’t do all the things you did do, but you still can do a lot.‘
-Laurie
Revolutionizing Dementia Care reveals how people living with dementia can still live a full and meaningful life based on their abilities, not their disabilities. Thank you to PBS and Dementia Action Alliance for their support and encouragement. Please support these organizations.
“Innovative approaches in memory care communities have shown improvements in the well-being of residents as they’re included, engaged and supported in social gatherings, clubs, and everyday activities. A revolution is here where people living with dementia get the individual heart-felt care they need.” – Community Idea Stations PBS
Enjoy this compilation of video and photos from filming The Face of Dementia, Living with Hope. These were taken during the day with the AARP crew. It was a great experience and I am extremely grateful to have been a part of this series. (The AARP videos can be found in my previous post.)
Dementia Daze Dosage 