Summer Mini-Vacation

This story is about Summer Day Trip for someone who is total care…my granddaughter.

I can’t say enough about the place she lives and the nice people who work there.  Not only do they have families of their own, but they give from the heart every single day they work.  They don’t push papers, they don’t lift boxes, and they don’t punch a cash register.  They do a very different job of personal care, dressing, feeding, socializing and delivering love and attention to their charges.

On Friday my granddaughter and another resident of the home went off on a day trip with their caregivers.  The excitement must have been tangible in the air.  This was a special day trip.    This was an exciting trip to see Polar Bears and a Pioneer Village.

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I wasn’t sure how the day would go – it was a big trip and a long day but the pictures said it all.

Many of us take it for granted that vacations for kids happen, that they all interact and can run and play.  But my granddaughter and others can’t .  They needs everything done for them.  They wouldn’t have a “vacation” without hands-on caregivers who get them to the location, who encourage them to try new experiences.   Luckily the group home has a wonderful “red Van” with plenty of room, lots of windows, and places to tie down safely – the residents.  The staff plan weekly adventures to concerts, appointments and places like the Polar Bear Park in a nearby town.  The residents Know when they go out in the van, that they are about to have fun of some kind – whether its a visit to the lake , McDonald’s or the Polar Bear Park!ducks1

RedVanSo Friday was special.  Friday was a blast!  Friday’s photographs warmed the heart of our family.

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Polar Bear swimming

Can you feel the excitement?  I can!

The day was a success!

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Polar bears made the day special.  The home staff made it possible to have this moment in time.

Adventures can be simple.  Adventures can be close by.  Adventures matter for us all.  I am so happy that yesterday was an adventure that made two people very happy!

This is what makes life special  – being included no matter what it takes.

I just wanted to share my good news story with my readers.

Fighting the Stigma

What is Stigma?

https://en.wikipedia.org/wiki/Stigma

The words in this definition ” a severe social disapproval of personal characteristics or beliefs that are against cultural norms”

Nowadays I am not sure what the “norm” is.   I see that the “norm” is that there are many more people talking about mental health issues and that is good.  What isn’t good is that there are still too many people who still are uncomfortable with discussing, sharing, and admitting that they or a loved one is struggling behind the scenes with that invisible but so real mental health issue.

The more I talk to people the more I see that there are many individual views…that even people who have known me for many years…says to me on the phone….”why do you say you struggle with “mental Health issues” ?   People will think you are “crazy”  “Just tell them you have Depression”

Here is what Wikipedia says about depression.

https://en.wikipedia.org/wiki/Depression

and here the definition of mental health

https://en.wikipedia.org/wiki/Mental_health

Words like Satisfactory levels of Psychological Well Being help us understand that there are many segments to the healthy mind.

Yes, I have depression…yes, I admit it…and I won,t stop saying so.  It is important that Patients speak out, that they do keep the conversations going.  If being depressed makes me “crazy” and makes people avoid me – then we have a lot more talking to do.

Caring about others

I have had a lot going on in my life lately.  I have been reflecting on the past few months and thinking about how I could have done things differently.  I tried very hard to help seniors and vulnerable who lived around me.  As a result I hope that good changes will happen.  I did create an opening for the truth, and discussions have begun that will help fix things that have been ignored for a long time.

When you see something wrong it is so easy to just turn away, to close the door, to just ignore what is happening.  But in my case I felt the need to stand up to a bully…in fact more than one.  The thing that made me do this was seeing older people, people with health and other issues, disabilities, and on assistance being ignored, being unheard and living in fear – feeling invisible.

I then became a target.  I don’t regret for a minute speaking out.  I don’t regret trying to make a difference.  I think it’s just as easy as that.  Trying Matters. It makes a difference –  it really does help others.

I am being called a hero by those who knew what I did.

I don’t feel like a hero.  But I feel like I made a difference and for me – that is enough.

I caught part of an interview on television this morning.  It was the father of a young girl who committed suicide after being assaulted targeted and bullied.  It seems to me that often people don’t want to see things, don’t want to step in or step up because it is just easier.   It is not easier for the victim.  It is not right to ignore someone in trouble or voiceless.

I hope that more people will reach out a hand to help others.  I really hope that today, this week, this month, this year – if you see something or someone who is in need…don’t be afraid.  Your help will give Hope, Value, and a Voice to the Voiceless.

We are – after all, part of a Community – it is this Earth we live on.  I can’t fix everything but I certainly can try to fix something, on my street, in my town, in my province, in my country – and so can you!

Online bullying…

Bullying is rampant both online and in real life. I totally agree with Kate and am saddened to hear her experiences. Personally I was a victim all my life, school yard, so-called friends and even people in positions of power contine to use their power to put me and others down. Several friends know my personal experience lately, therefore I stand with Kate in asking everyone to stand up to Bullies.

bullyLately, yet more ‘people’ online, who asked to be ‘friends’ on Facebook, have been dishing out what I felt was some extremely personal, mean and nasty feedback. I don’t even know if they are a really the people they say they are, or are using pseudonyms. Sadly, I thought we had resolved it privately, but it seems not as there was zero response to my last private message, replying politely to theirs.

This latest attack has not been to do with language, but regardless of that, it seems the very simple things like the right to request people do not use words and language that are offensive and considered disrespectful to many of us living with dementia, when used to label us publicly seems a hard one for others to come to grips with…

These people remind me of the school yard bullies, but online, and hiding behind false names.

Opinionated, self-righteous, and downright mean. Bring it on……

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Bullying – my thoughts

Bullying is alive and well.  I remember intensely my first years at school…and learning that not everyone was going to be nice to me or even try to get along.  I had no idea that people actually went out of their way to hurt, intimidate and abuse others.  I was punched in the stomach, had the wind knocked out of me several times, chased home, laughed at, made fun of by both boys and girls.

I was raised in a religious home and the first rules we learned were the Ten Commandments.  We learned manners, we learned to be kind.    We were told to turn the other cheek – that to react with violence was wrong.  Well, I have learned that turning the other cheek is something you can do occasionally but sometimes you just have to stand your ground and say No more…I am refusing to be bullied.

I watched a story on the news last night – a cell phone video of a teenaged boy in southern Ontario picking a defenseless girl up and slamming her whole body to the ground, hitting her head and knocking her unconcious.  The rage, the violence and the total disrespect of another human being shocked me.  We are getting shocks like this in the news daily.

Another big story this week is about a defenseless man being shot to death. – and I fear that guns seem to give their owner the right to use them to hurt others without a thought.  it is discouraging that in my senior years I am seeing repeats of news stories that I thought were in the past.  Even going on vacation puts you at risk.  I am not saying hide in your home, but I am saying it’s honestly time we did something to stop the insanity.  The color of your skin, your age, your ability or disability, your station in life – we cannot change some things…but we sure can change how we act toward others.

I always hoped that I would grow up fast so I could be in charge of my life – an adult and be safe because I was grown up like everyone else.  I was wrong.  It isn’t that safe.  It isn’t that easy to be a senior,(or any age) and it isn’t easy to stand up against bullies.

I have met bullies in my workplaces, in my neighborhood, in my town.  I continue to see the need to protect the vulnerable.  I am trying to make a difference in my corner – I hope you will look around and really see who is near you – who may be suffering in silence.

Kindness truly can make a difference.  Standing up for what is right is a hard thing to do – but I cannot lock my door,, close my eyes and forget – if I do it…then who is going to protect me?

Can we spread this story and remind others to just extend a hand, give a smile, give everyone some hope that there is kindness in the world.  No one should live in fear – but they do

Kindness Matters

From the heart of a caregiver – Thank you

After a long absence I became inspired today to write from the heart

Some know, some may not know that I have a special grandchild who has a rare genetic disorder emanuelawarenessand from her birth in 1995 her life changed mine and her family’s.  From the day she was born it has been a daily weekly monthly challenge for her parents to get her the best care, to understand what is changing in her condition and to give her the best life possible.

Yesterday marked my granddaughter’s 20th birthday.  It is indeed a milestone because in this past year she has been placed in a local long term group home – if she was a senior it would be called Long Term Care.  It is indeed long term care as her daily needs for the rest of her life mean she needs round the clock care, medical support and that is more than the average caregiver or parent can do.

They say anyone can be a caregiver.  It is an important job.  It is True that Anyone can be a caregiver but it is vitally important that each caregiver not only goes through the motions of the job, bathing, dressing, feeding, giving medications, getting up to attend to someone in the middle of the night, making meals, washing clothes, thinking ahead and planning outings, and preparing everything needed, but that they also have a passion and an empathy for those they care for.

As a family caregiver (as well as working as a Personal Support Worker in nursing homes) it has been very hard for me to let go.  I helped support my granddaughter a lot over the past few years.  It was and is the hardest job anyone can do.  Her family did it well – but it takes a lot to do round the clock care as well as work, raise a family, keep a home going…and I was glad to be able to add some support.

Since my granddaughter’s placement in 2014 – it has been very hard for me to see her in the care of others.  Although her caregivers are wonderful, warm, affectionate and inclusive to all their charges it was still hard for me to see my own family member in their care.  When it is your own loved one it is hard to let go.

Until yesterday….

It was my granddaughters 20th birthday.  Another resident in her group home also had a birthday two days earlier.  I was so impressed that the whole decor was changed and individual for each person.  Both she and the other party girl this week were given total focus for their day! And they each get total focus for their care and support each day.

My granddaughter is developmentally delayed and non-verbal.  She can express certain wishes and feelings by the sounds and responses she makes to those around her. It takes thoughtfulness and patience to understand what she wants or needs.

It meant the world to me (and the family) that the staff at the group home, knowing that my granddaughter was and is totally in love with the Movie “Frozen”, totally in love with Olaf the snowman, totally in love with the music, the scenes, everything about it……decorated the whole living space with balloons, an Olaf Pinata! a tablecloth with Frozen characters all over it MaiaOlaf20

My granddaughter was Princess for the day.  She loved it, she soaked it up, she kissed and waved at everyone.  Her excitement vibrated from her body and I mean that sincerely.  She had a memorable day from start to finish and was exhausted by the outpouring of love, affection, gifts, a cake with candles, a special card and gifts from the staff of her home – just so many ways they made her day special.

Truth be told she is treated like a Princess every day.

Everyone gets attention, no one is excluded or left in a corner.  They are spoken to, touched, hugged, fussed over and loved in the way that family cannot continue to give for years and years.

This is what Caregiving is about.  This is what everyone deserves – and I am including every Senior, every person with Special Needs, everyone who cannot speak for themselves.

I woke up today realizing that I can let go a bit more.  I can still love her, still visit her, but still know that when I am not present, when her family is not present – that she is getting the best care possible.

This is what I want for everyone.  Reassurance is important for not only the person needing care, but for their family and friends.

So from my heart to the hearts of each caregiver who gives their precious time away from their family and friends to care for my family member and others…

Thank you!  It means the world!

Patient Engagement at the OHA Conference

Last week I had the honour of attending a conference focusing on Social Media Engagement.  The Ontario Hospital Association ( @OntHospitalAssn ) held this event in Toronto, Ontario on January 23rd, 2015.  Coming from a northern Ontario city this was a chance for me to share the importance of social media for isolated patients in remote areas.

Social media has added to my life – as a patient and a caregiver.  The encouragement and learning I receive through online connections is so valuable.  It was good to know hospitals are engaging through social media as well.

It was an honour to add my comments to those of other patients in attendance that day – @DebMaskensKCC (Deb Maskens)  @anetto (Annette McKinnon) @PatientCommando (Zal Press) and @KathyKastner.  I must mention that @RobertHawke a comedian and coincidentally a patient (aren’t we all!), did a great job of linking our enthusiasm and value of Social Media with our patient experience.  It was great to meet each one of you!

Patients who bravely come to social media will be surprised at the communities existing there for them.   Speaking from my own experience I have always felt shy, nervous, afraid to say the wrong thing and amazingly enough  (to those of you who follow my tweet stream)  I will fall silent in the presence of those who are educated, have degrees behind their names, and who use words I have never heard before.  I surely can’t be alone in feeling intimidated or not smart enough.  I am learning to ask.  It’s as simple as that.  Social media gives us all a forum.

I am a senior and have had some difficult interviews or dialogues in a few doctor offices over the years. I felt  my point of view was not very important.   Not so.  We are valuable.  We are the other side of the conversation. Yes, we all could do better at communicating but that is improving.   Communication is better when working as a team with the HCP (Health Care Professionals) whom we meet in real life, in our doctor’s office or via Social Media.

My time on Social Media ( particularly Twitter ) encourages me to continue to bring others to the table.  I feel like I am breaking trail for those who come behind.  Often I feel unqualified, uneducated but still I reach out and try to learn.  We as patients want to be understood and we crave answers & support.  Let us in.  Let us talk together. Let us work together.  Let us improve the life of all patients, caregivers, family members.

#HCSMCA was the first chat I participated in via Twitter. It stands for Health Care Social Media Canada.  The Moderator and Creator @Colleen_Young has worked tirelessly to create a safe place for conversation, interaction and learning.  Thank you Colleen!  Meeting in person after 4 years of online chatting was a thrill – the connection is as real as can be!

At first Twitter and tweet chats felt strange.  But over time, watching round table discussions happening with doctors, specialists, patients, family members and mental health advocates I had to join in. Online discussions are difficult to duplicate and hard to organize in real life.  Distance and cost is a huge factor for patients in rural areas.  Social media gives us another way to connect and share.

I am grateful for the opportunity to be part of the discussion at the Ontario Hospital Association conference.  I came away feeling I was heard and welcomed.  I also wish to thank Oana Matei, Program Manager with the Ontario Hospital Association who did so much to make sure my (our) experience was positive and that everything went well.

The online chats with #HCSMCA members has encouraged me to be stronger, to say what I feel, think and experience as a patient and caregiver.  There is nothing wrong with standing up for yourself and for others you know, care for and care about.  Keep talking about your Patient Experience.  It matters.