Yes, it can be tiresome listening to someone who is living in the early and middle “stages” of dementia tell you the same old stories over and over again.
When you feel worn out by repetition, it can be helpful to remember these three things:
The person living with dementia is likely trying to create a connection with you through story telling. She is reaching out in one of the joyful ways she knows how: by sharing some of herself or her life.
The person living with dementia likey doesn’t remember he has told you that same story before. To him it’s fresh and new.
Storytelling, conversation and connection are great ways to preserve a sense of self and to get brain cells firing, both of which are good for the well-being of us all, including people living with dementia.
In the powerful video below, Teeepa Snow demonstrates in just a few minutes how to keep conversations going with a short and simple phrase that will create engagement instead of cutting people off and potentially creating ill will and disconnection.
Teepa’s counterintuitive tip? Say: “Tell me more…”
Some of the stories I hear from care partners break my heart. Many find themselves in the same boat: being abused by their own family members who do little or nothing to contribute to the well-being of another family member living with dementia.
Here’s a comment from MyAlzheimersstory subscriber LK:
“You really hit the nail on the head with this post, Susan. We carers just need a break sometimes, we need a weekend away, we need someone to come and take the person living with dementia out or offer to sit with them for an afternoon.
I am a carer for my partner of fifteen years, we’re not married and the house we live in is his. He has four grown up children, none of whom are any help; they don’t visit and don’t offer to take their dad out (one lives on another continent). I wanted us to move up to live nearer to my family who are currently a two-hour drive away. Three of the four children (including the one living on another continent!) said “no you’re not going to move our dad.”
The oldest has joint power of attorney with me and has said he will block any sale of our current home. Although they offer no help, three of the four of them are determined to make my life even harder, which has resulted in me having to see a solicitor to see what my rights are.
I no longer have any goodwill to give to the three who are blocking the move – whereas before I would have taken my partner to visit the ones who live in this country I won’t do so now, which is a loss to my partner but I can’t do everything especially as they seem only to be judgemental over the way I look after their dad and seem oblivious to the fact that I might need some emotional support from my own family!”
Although my situation was different than L.K.’s, the result was the same – exhaustion, frustration and PTSD for me, and neglect and abuse for my mother during the last four years of her life.
Even more discouraging is the fact that, more often than not, the law seems to support the abusers!
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Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom. I shared her great ideas previously here and here. On February 3, 2019, Catherine, who lives in New Jersey, USA, shared a post on USAgainst Alzheimers that made my blood boil. Here it is in its entirety, reproduced with Catherine’s permission:
~~~~~~~~~~~~~~~~~
Well, this is how upside down the world has become. My 16-year-old daughter wants to go to nursing school. I am a registered nurse and frankly, I wish she would find another profession, but I believe it is her choice. I try to tell her she does not need to go to nursing school because I am a nurse and it is no way like it is portrayed on Grey’s Anatomy!
Her school offers two vocational classes one for medical assistants and another class for those that want to go to college. The last, you need to have good grades. She is is an A / B student. To make a long story short she was so eager to get into the program, she tells her guidance counselor that she helps me care for her dementia nanny.
I get a knock at the door: two police and two Division Youth and Family Services workers. I was so embarrassed. The social worker starts out with may I come in? We received a complaint that you let your daughter care for her grandmother and you make her feed her…ect. I said come in, but I am going to record you! How dare you! Well, my mother played with my phone and put it into a knock lock mode, so I could not record, but they did not know that. The lady tells me that I could not record our conversation. I said like hell I cant! This is my home and you are standing in front of me, four people. Who is my witness! The policeman said yes it was my home, and yes I could record.
Thank goodness my son was visiting. I went and told him to sit and listen to our conversation. I told them that my daughter has never given my mother a shower. I only asked her to help get her in the tub, I told her I am a nurse and did not use my daughter as a slave. My daughter helps me keep Mom steady when we put on her depends and only once she cleaned moms ass. Only because she pooped when I was at the grocery store. My son told the lady that was the truth and that when my mom soils herself. Even if he volunteers to help I just instruct him about what supplies to get or to make mom’s bed. I told the ladies if I made my daughter my mother’s aide, why did I drive my kid to school and why did I let her go to a friends house during the weekend?
I told the ladies that as a nurse I taught my daughter how to use the hospital bed, turn Mom, and help my mother out of bed with not one person but two. She knows never to get Mom up alone, ever! If I have to run to the doctor I tell my neighbor who is a nurse. My mother is DNR and DO NOT HOSPITALIZE and all the papers are on my refrigerator and posted on my mother’s bedroom door. They ladies went and looked at my mom, they looked in every room of my house. My home is clean!
The one policeman whispered in my ear how sorry he was and he sees I take excellent care of Mom. So I call the school and find out it was my daughter’s counselor that made this call. I said did it occur to you that my daughter was trying to let you know she wanted to get into the vocational program! If I used her as a slave, I am very sure she would not want to be a nurse! That she needed a parent’s signature to get into the program, so she is the one that came to me to sign the permission slip! Dumb ass counselor.
Social services left telling me that it was a misunderstanding. I said yeah – how about this false allegation and negative effects could or would have on my clean nursing license. Now I have to wait to get a letter of clearance. Waiting. Called the school; the counselor said that social services never called her back …so I said they came out 24 hours after you made your false accusations and its taking weeks to get a letter from them to get cleared…DID YOU FOLLOW UP? So if I understand correctly you called social services and they came to your school and questioned and investigated my daughter first before they came to visit me to make sure our stories lined up – which they did – they talked to me and never took my daughter from my home, because you made a bogus call and wasted taxpayers money? My daughter’s counselor did not like my words and common sense. She hung the phone in my ear!
~~~~~~~~~~~~~~~
I find this story absolutely astounding, and a clear example of how the work of family members who are dementia care partners is so terribly misunderstood, particularly by many so-called “professionals.
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A lot of lip service is given to person-centered care, and often not a lot of it is actually delivered. And some people say we should go beyond the concept of person-centered, and instead focus on relationships.
Whatever words you choose to use, here are some key actions that will help develop care environments in which being counts more than doing:
Know each person, their individual likes and dislikes, as well as their wants and needs
Recognize that each person can and does make a difference, no matter their physical, psychological or emotional state
Respond to spirit, as well as to mind and body
Understand that risk and risk taking are normal parts of life. Risk can never be completely eliminated. Psychological safety is as important, perhaps more so, than physical safety.
Put people before tasks
Do unto others as you would have them do unto you
Promote the growth and development of all
Shape and use the potential of the environment in all its aspects: physical, organizational, psycho/social/spiritual
Practice self-examination, searching for new creativity and opportunities for doing better, and interacting more effectively with those around you.
Recognize that culture change and transformation are not destinations but a journey, always a work in progress.
I drew these from a great article by Marguerite McLaughlin, Senior Director of Quality Improvement at American Health Care Association; the article is entitled Avoiding Institutionalizing Person Centered Care. McLaughlin gives several real-life examples of what is and what is not person-centered care, and makes excellent points such as this one:
“So often, care plans read “redirect” as some generalized marching order — a vague notion to get people with Alzheimer’s disease distracted when instead, it should offer ideas that soothe and comfort, prevention strategies that keep folks from becoming bored or lonely. Oh, and there is so much more that can be said and done within this context!”
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January 25, 2019: I struggle between my twin needs for solitude and connection. Today, I missed a loving touch, and felt a little lonely. So I did something I haven’t done in a long time: I opened the file of archived audio recordings I have from when Mom was in #DementiaJail, and randomly picked 2016, the year she died. Today’s date was near the top of the list.
My visitation “privileges” had been confined to between 1 and 3 p.m. for almost a year at that point, and most days Mom was “asleep” (i.e. sedated) during the time I was allowed to see her. I would sit by her side, and hold her hand, helpless and furious about the situation in which we were so cruelly confined.
I clicked on the January 25th file, and listened. What I heard filled me with sadness, joy, grief and hope. I was extremely touched by the first few minutes of our conversation, which to me clearly demonstrate that people living with Alzheimer disease want and need to remain closely connected in relationship with those around them, particularly those they love.
Here’s a clip (which to me says it all), from the start of my ninety-minute visit with Mom that day three years ago (transcript below if you want to read while you listen)
Transcript
Susan: Patty? Patty? Hello!
Mom: Hello.
Susan: How are you?
Mom: How are you?
S: I’m very well. How are you?
M: Fine.
S: Good.
Yeah.
S: I’m happy to see you.
Yeah.
S: Hi.
Hi. (A long pause) I…I…I like seeing you.
S: I like seeing you too Mom, very much.
Yeah.
S: I like seeing you very much Mom. We still have fun together.
You have eh?
S: Yeah, we do.
Well that’s kinda nice eh?
S: It is kinda nice, Mom.
Yep.
S: it’s very nice.
Yep.
S: We’re lucky that way.
Yeah.
S: Not everyone is as lucky as us.
Nope.
(in an incredible moment of synchronicity I go to turn down the volume on the TV, and a voice on the talkshow that’s on says something like:
“…and it was a real gift to be able to say how much he brought to her life, and how much she loved him and what an honour it was to care for him when he got sick, and that was really beautiful to me, and I think one other is one other thing i would say is funerals are for the living so it’s so important to tell the people you love how you feel about them before they depart, don’t say it at the funeral when they can’t hear you.)
S: Mom?
Yeah.
S: Would you like to go down and have some tea with me?
Yeah, I would. I would. It would be nice.
S: Okay. Shall we do it then? Let’s do it. I’m going to lift your chair up okay? I’ll get your other chair first. (I get the wheelchair) Okay Mom. Patty?
Yeah.
S: I’m going to move this chair so you can stand up okay?
Yeah. You’ll like that eh Sue?
S: I do. I like to spend time with you.
Yeah, well…. I like to spend time with you.
S: I know you do ‘cause I’m fun (I laugh).
(Mom laughs) you…you…you…have fun.
S: …and we joke around together…
Yeah
S: …and we do some spelling…
Yeah.
S: …and you are an excellent speller…
Yeah.
S: …you can spell every word in the dictionary
Yeah, it would be fun wouldn’t it?
S: It would be fun, Mom,
Yeah.
S: …and then we do some singing…
Yeah, that would be nice.
S: How are you feeling today?
I feel good today.
S: That’s good. Were you having a little rest?
Yeah, we were having a little rest, but it was a nice rest.
S: Good. I just need you to lift your bum up a bit Mom.
It’s nice though, it’s nice.
S: Lift your bum up Mom. Again. (As I free Mom from the various “bells and whistles” that are attached to her so I can move her from the recliner to the wheelchair, they begin to sound their respective alarms. “Oh shut up!” I scold the bells and whistles in frustration)
Oh yeah, well you…
S: That thing drives me nuts Mom. It drives me crazy.
Well, it drives me crazy too.
S: It drives you crazy too?
Yeah. I don’t blame you.
S: What about it drives you crazy? That sound?
Yeah.
S: Me too. Are you ready to stand up?
Yeah I’m ready to stand up.
S: Okay good. We’re going to transfer over to this chair okay?
Yeah, well it is a chair.
S: It is a chair. I’ll put your feet a little bit over like this…okay, ready?
Yeah.
S: One, two, three, stand up, Mom. Excellent. You stood up easily Mom.
Yeah, it’s true.
S: It is true. Can you take a step?
Oh yeah, sure I could.
S: Okay good. Hey, you’re doing well. Keep coming. Okay, I’m going to turn you around over into this chair, Mom. How’s that? (She sits in the wheelchair)
Oh it’s lovely. It’s nice over there.
S: It’s gorgeous. Do you need to go to the bathroom?
No, I like to go to the bathroom though.
S: The peeps? Should we go the tea first and peeps after?
Yeah that would be nice.
S: Okay, let’s do that then. Yesterday when I came you were asleep, Mom.
Oh no. I was a asleep?
S: Yeah, you were sound asleep.
No.
S: Yeah, but you’re awake today.
Maybe I’ll be awake today and another day (Mom claps her hands)
S: Good clapping. Clapping on your…?
Gapping!
S: Yes.
What can you spell today? Can you spell clock?
C-L-O-C-K.
S: Yes!
C-L-O-C-Kay on your little pay.
S: Yeah. (I laugh)
Oh, It’s fun to go over there.
S: Yeah. And it’s fun to do spelling. We’ll do some more downstairs.
Yeah, that’s fun….
~~~~~~~~~~~~
I miss connecting with Mom in this physical plane. I’m glad I have these conversations to reflect back on. I’m grateful I said “I love you” to her just about every day for the last four years of her life. Lucky us ❤
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I strongly believe that people who live with dementia and their care partners need to speak out and tell their stories if dementia care is ever to reach the standard it should be at in Canada and around the world.
During the last four years of her life, I visited my mother virtually every day in a place I came to call “Dementia Jail.” While it was good for both of us, and essential for Mom’s overall well-being, at the same time it was traumatizing for me.
“I feel like I’m watching mom being slowly tortured to death every day,” I told my friends.
When Mom died, I realized just how much those daily visits had impacted me. I have no doubt that I experienced some form of post-traumatic stress in the weeks and months following her death. The neglect and abuse I witnessed caused me to become a dementia care advocate. The 600+ posts on this blog comprise a part of my advocacy. But I also actively seek opportunities to tell her story in different ways.
On October 24, 2018, I was one of three facilitators to lead a workshop called “Preventing the Use of Physical and Chemical Restraints: Finding Alternatives” at Together…Promoting Wellness, a one-day conference spearheaded by Disability-Life-Dignity (Handicap-Vie-Dignite), which was aimed at addressing the issues of neglect and abuse in Quebec’s long term care facilities. This is the video of the English version of that workshop; I spoke for the first 20 minutes or so. We also did the workshop in French; the video of the French session is here.
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Teacher and students at Drake Medox College/Drake Medox Health Solutions in Surrey B.C. pose with a poster of “let me shine” hanging on one of their classroom walls
“I LOVE your newsletter!” the email began. “I often share your stories with our students and instructors. I actually printed, laminated and posted your ‘let me shine’ dementia rhyme in all our classrooms and labs.”
The message was from Angela Del Bianco, the Marketing & Program Development Manager at Drake Medox College/Drake Medox Health Solutions in Surrey B.C., Canada. It’s the kind of message that makes my heart sing because it tells me my advocacy is having a worldwide impact by helping to change the perceptions of those who work in dementia care.
I sent an email back to Del Bianco asking for more details; she responded immediately:
“We have nineteen classes and approximately three hundred and twenty-five students in progress at any given time at our two campuses. These students are supported by twenty-two instructors (classroom, clinical and English as a Second Language support staff as English is not the first language of many of our students).
We offer Health Care Assistant (HCA), Activity Assistant and Community Support Worker Programs, but HCAs represent more than 80 percent of our student body: we graduate more than five hundred and twenty-five HCAs a year!”
That means a lot of future care workers will be exposed to the reframing and redefining messaged contained in my ‘let me shine’ poem because Del Bianco took the initiative and posted it in her college’s classrooms.
Better yet, this isn’t the first time the poem has been used in this way.
Bing Boettner, a registered nurse who teaches health science students at a technical school in Maryville, Montana, contacted me in April 2017, and asked me to do a couple of webinars for her students via Skype. Boettner had also printed and laminated “let me shine,” and hung it up in her classroom. I got a big surprise when she showed the poster to me when we Skyped – it was about six feet high!
A couple of weeks after the sessions with Boettner’s students, I was in Ottawa, Ontario, doing a series of workshop for caregivers. I included a copy of “let me shine,” in the participant handouts. One woman in the class said: “I have that poem pinned on my wall. Someone gave it to me.” I was thrilled. ” I wrote it,” I said. She was stunned. She hadn’t known where it came from, or who had written it. It felt wonderful to learn that my good messages are spreading, even when I don’t always know about it. Every little bit counts.
So what can you do to help change the face of dementia care for the better?
Easy. You can download, copy, and distribute posters of “let me shine” as widely as possible. Here are some ideas of where you might post the poem:
classrooms and staff rooms in technical schools, colleges, nursing schools, medical schools, etc. where future healthcare workers are learning and being trained
In care facility staff rooms, nurses stations, activity rooms, kitchens, dining areas, etc.
above your loved one’s bed and/or in their bathroom
You could also:
hand it out in care worker and caregiver seminars, sharing circles, meetings, etc.
include it in healthcare and dementia care conference packages
email the link to the poem or to this post to your friends and followers
include the link to the poem or to this post in your next newsletter
share it and discuss it at your next staff meeting
put it on your blog
read it anywhere and everywhere!
Or maybe you have some other ideas – I would love to hear them! I would also love it if you sent me a pic of what you do to spread “let me shine” (with a few details) so I can post your story on MyAlzheimersStory.com and the MAS Facebook page.
Together we can make a difference.
#wecancarebetter
Note: I had to crop the picture of the Drake Medox College/Drake Medox Health Solutions students and teacher to fit my banner format. Here’s the full pic Angela Del Bianco sent me:
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So please, future care partners, help me to live until I die: interact with me, support me, invite me to grow and learn and to engage life with purpose and meaning and please, please, please don’t stigmatize it by calling it “therapy.” If things keep on as they are, people who live with dementia will soon be getting “food therapy” every time they have a meal! And “sleep therapy” when they go to bed at night or have an afternoon nap. It’s completely ridiculous.
1) Pet therapy
I adored my little cat Pia Roma, who had lived with Mom before she became my treasured housemate. The pic above is of Pia and I having a cuddle on the morning of the day she died (June 29, 2018). I hope I will have animal companions of some sort near me until I too say goodbye to this place. Taking care of and loving an animal gives people of all ages purpose and joy. Purpose and joy are important. I love to have animals around me; I see no reason to label being with animals “pet therapy” if and when I’m living with dementia.
2) Music therapy
They say music is the universal language. It connects people, speaks to them in special ways, and touches them at their core. I experienced its powerful effects first hand with Mom. Through music, I learned many things and found much joy. While I think I will love to continue to experience music in many forms when I live with dementia, I don’t see why enjoying music should be described as “therapy” simply because my brain is changing.
3) Art therapy
I create art. I’m not a painter or a sculptor or a potter. At least not yet. But I have created and I continue to create multimedia works that bring me and others joy and happiness. I hope that if I ever come to live with dementia that I’m able to continue with the artistic activities I do now. Why should those same activities be labeled “therapy” if I live with dementia? The word therapy has implications I don’t like and I’ll thank you kindly not to use it when I’m living with dementia.
4) Doll therapy
I never played with dolls. Never had children. Not interested, no thanks. But if I did love babies, and playing with dolls as a person living with dementia made me feel young and wonderful and happy, why would it have to be called “therapy?” Why not just say every human being needs to feel connection, love, purpose and meaning and enjoying dolls, or stuffed animals or whatever, are other ways of achieving that?
It’s writing. It’s poetry. It doesn’t suddenly become “therapy” because one has a changing brain.
6) Exercise therapy
Seriously? Exercise therapy? With a few exceptions, exercise is just plain good for all of us, most of the time, no matter what condition we’re in.
7) Gardening therapy
Ummm. Please. See 6) above.
Come to think of it, when I’m living with dementia, don’t give me any kind of therapy at all. Support me in doing the things I’ve always enjoyed and in exploring new ways of creating purpose and joy in my life. Yes, by all means do that. But don’t call it “therapy,” because I don’t want to be stigmatized and have labels applied to who I am and what I do when I live with dementia because I will be the person I have always been only in a new, different and equally beautiful way.
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Most family members who become dementia care partners do so out of necessity rather than choice. They are thrown into the deep end with no training, little knowledge and few skills.
And, as we live longer, the number of people who are drafted into care partnering roles is only going to increase because age is the biggest risk factor for developing Alzheimer disease and other forms of dementia.
How can one prepare oneself to potentially become a dementia care partner?
I don’t think there’s a formula that works for everyone because everyone’s life experience is different (although there are similarities and commonalities of course!). However, I think the best preparation in all cases is to practice good life skills and habits that will serve us no matter what challenges we face. When we practice these skills, we are better equipped to live more joyful lives whether that includes being a dementia care partner or not.
Below are seven life skills I think are especially important for dementia care partners, and which may help anyone to prepare for that role, as well as to live a better life overall.
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No, it’s not a typo. The headline does indeed read Asperger Syndrome and not Alzheimer Disease. And no, the focus of this blog is not changing — this post is a bit of an anomaly.
Lilly*, one of the first and most loyal followers of MyAlzheimersStory.com is an “Aspie.” When I recently befriended someone who, like Lilly, was diagnosed with autism spectrum disorder (ASD or Asperger’s syndrome) later in life (i.e. in his forties), I wanted to know more about the condition so I could be as supportive of my new friend as possible. Understanding is key to communication, and, as we had been collaborating on a project, I felt the more I knew about being an Aspie, the better I would be able to engage him, and the more successful our work together would be. Sadly, the project will now never see the light of day.
Remarkably, as I dug into the information, I recognized the signs of high-functioning ASD in myself, and realized I might easily be considered on the edge of the high functioning end of the spectrum.
When I shared this with Lilly on Messenger, she quickly replied:
“I too believe you could be, you have many high-functioning characteristics, and you troubleshoot with different skill set than “non neurodiverse”, from my observation over the past few years.”
I began my research by revisiting Temple Grandin‘s TED201O talk The World Needs All Kind of Minds, which I had found fascinating when it was first released, and which delivered additional insights on second viewing. Grandin lives with autism, has a doctorate, and is one of the top scientists in the humane livestock handling industry; a highly rated 2010 movie about her life, starring Clare Danes, won a Golden Globe award. She is also the co-author of this groundbreaking book: The Autistic Brain: Thinking Across the Spectrum.
Here is her 2010 TED talk:
This short CNN piece combines live interview with clips from the movie:
I found one of the best “basics” articles on the Autism Speaks Canada website. The article points out that “Asperger syndrome often remains undiagnosed until a child or adult begins to have serious difficulties in school, the workplace or their personal lives. Diagnosis tends to center primarily on difficulties with social interactions.” Other information I found suggests marital issues are frequently among the diagnosis drivers. This excellent Psychology Today article outlines a number of specific, practical strategies that may help get and/or keep a marriage with an Aspie on track. This one in particular struck me:
“Understanding that [Asperger Syndrome] is a biologically-based, neurological difference vs. a psychological mental disorder is key. Learning about [Asperger Syndrome] is important to sort through what challenges are [Asperger Syndrome] based and what are just regular marriage issues. Books, movies, articles, and seminars can help the both partners better understand [Asperger]. Due to its complex nature, learning about [Asperger Syndrome] is lifelong.”
People with Alzheimer Disease are often stigmatized and seen as “less than” or deficient in some way. I wrote a poem to help change that mindset. Aspies are similarly stigmatized, and often told there’s something “wrong” with them. There’s nothing wrong with people who are different. They are simply different. So I also wrote a poem about what it might be like for an Aspie to be labeled and stigmatized, from an Aspie perspective. Not surprisingly, I seem to have a pretty good grip on that.
Doing this research was helpful and enlightening for me. I hope it is for you too.
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My Alzheimer's Story 