Happy Birthday to Mom!

Today our mom turns 82.  She had already left the house this morning when I called.  She was with Tina at the hospital.  Tina had eaten a half of a muffin and then wanted to lay on her side.

Picture taken on their 60th anniversary 

I wondered this morning what mom would have been doing if she wasn’t at the bedside by her youngest daughter.  She would have probably gone out for breakfast and hopefully got a free one due it being her birthday.  They may go out for lunch since a lady from mom and dad’s church was coming to sit with Tina.

Mom has been so faithful to be there for Tina.  She is on the top of Tina’s list to call when she needs anything.

Happy birthday mom from all of us!  We love you!!

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If you are interested in going to sit with Tina at the hospital she would love to have you there for a few hours to give her a drink or two, feed her a meal and try and make her comfortable.  You might be able to give mom a break some time.  We appreciate your support.

Tina was moved to a semi-private room so if you have been there before….she has moved.

Oh….and Happy Birthday to Hilda who shares the exact day and year for her birthday.  Two special ladies born on this day 82 years ago!

STEELE Standing….

Help Wanted

Tina sent me some adventures of her day today so I thought that was a nudge to do another post.  

Tina was able to get out for a drive.  They went to Picton and if you do this trip right it should include a ferry.  I guess they did it right!

There isn't much better than a drive on a nice day unless of course you can lay out on your deck.

My last entry was only on Wednesday but in the life of Tina so many things can happen in a few days.  So let's catch up.

On Thursday, the Occupational Therapist called while we were doing our video chat. She will put in a request to get the foot rest fixed.  It's good that it can be taken care of...should we get mom some driving lessons for the wheelchair?

The OT also said that she would be stopping in some time next week to get the quote signed for the chair lift to go on the stairs.  

Judy (cousin), arrived in the morning full of cheer and looking spiffy.  Tina said that they had the greatest day.  They went for a drive, picked up subway and had a picnic.  Tina wasn't even tired.  Next time Judy said that she would bring her convertible and she promised me that she would take pictures. 

Pastor Herb, Dianne and Jason came for a visit and brought a chicken...a cooked one.

On Friday, mom was back on duty.  She was buzzing around the house while we did our morning visit.  Tina said that dad was coming up for lunch.

The ramp was completed this week and it is a job well done.  Thanks John and team.

Carol asked the question, "Are the pails at the bottom to slow you down."  Tina did say that she actually walked up the ramp!!

Next week Tina's team will be:  

• Monday - respite
• Tuesday - Vicki
• Wednesday - mom
• Thursday - Jenn
• Friday - mom

Job Duties:

• provide snacks/meals upon request (food provided)
• outdoor walks if the weather is nice
• take part in Sister Three chats if you arrive before 10:15 a.m.
• walk her to the bathroom and be willing to assist as needed
• sometimes watch her sleep 
• be willing to be bossed around :)

Compensation:  a huge thank you!

If you are interested in volunteering a day or two weekly/monthly, please contact the boss....Tina!  Mom has been doing a lot and we would really appreciate any help.  They have a whiteboard to keep track of the comings and goings at the house.

Thank you to Judy, Jenn, Thelma, Vicki and especially mom who has already helped.  I have heard that Tina isn't so bad of a boss and really isn't too bossy either.  Really!

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Tina is STEELE Standing and we appreciate all those that are standing with her!  She continues to encourage us with her optimistic attitude.

"May the Sunshine of Comfort Shine Through the Gloom of Despair" - Irish Proverb

This week has held its fair share of despair.  Since it is St. Patrick's Day, I thought I would use a few Irish proverbs in this blog.

Early in the week, Tina got a call from Dr. Melanson's office.  She was told that she doesn't qualify to have the Radicava treatment.  Her forced vital capacity was too low.  She needed 80.

Our responses were wanting to scream, cry and yell, "It's not fair."  This time I will use Tina's proverbs.  Her response was, "all things work together..." and "everything will be okay."

Carol's long time side kick passed away this week.  Sadie was a sweet girl who lived 13 happy years.  She was a faithful pup who liked to follow Carol around her huge garden or spend time at the ocean shore. 

"However long the day, the evening will come."

May God give you, for every storm, a rainbow,

For every tear, a smile,

For every care, a promise,

And a blessing in each trial.

For every problem life sends, A faithful friend to share,

For every sign, a sweet song,

And an answer for each prayer.

The weather is getting nicer and so our spirits should get lighter.  Tina was able to sit out by "her fire" this week and today she didn't even need a fire because it was so beautiful in Ontario.

                      May you always have 

Walls for the winds,

A roof for the rain, 

Tea beside the fire,

Laughter to cheer you, 

Those you love near you,

And all your heart might desire!

The occupational therapist was able to order a transport wheel chair for Tina.  This chair has little wheels in the back instead of large ones.  This wheel chair is much lighter than the regular ones so with the weather getting nicer, Tina will be able to get out more with it.

Emma, my granddaughter, has been with Tina all week and has been jumping in on our video chats in the morning. She has been trying to help with lots of little things and has helped Nana with some baking (and eating!)

In our video chats, we share, we cry, we tell our frustrations and our happy times.  One of the great things is to be able to see some family that we wouldn't normally be able to.  This week we were able to have four generations in the chat.

This picture is priceless to me...Carol's oldest son, James with me at the top right and at the bottom, Mom with my granddaughter, Emma. Here we are in 3 different provinces, 4 generations using technology to have a mini family reunion.  

In all the world you will never find another race of people 

blessed with as much love, laughter and

pride as the Irish.

We are a race that loves deeply,

our family, our friends and our country.

We have always found humour in every situation,

it is what kept our spirits strong.

Our pride is beyond measure, in our race,

in our homeland and in our roots.

WE ARE THE IRISH.

This week Pastor Herb dropped in to visit Tina.  He wanted to know what the church could do to help.  Tina shared this blog link with him and mentioned the meal train link:  

 Click here to go to the Meal Train

The men are willing to help in whatever way that is needed.  Our army keeps growing....or is it that our family is.

Irish Family Blessing

May love and laughter light your days and warm your heart and home.

May Good and faithful friends be yours, wherever you may roam. 

May peace and plenty bless your world with joy that long endures.

May all life's passing seasons bring the best to you and yours!

We have 3 new followers for this blog.  Thanks Scott (old friend) and Brenda (who knows too well about ALS) and 345cipa?  I'm not sure who the last follower is but I like the red light profile.  We would like to use that light to put a stop to this ALS.

Our Irish blood is strong and today we ARE STEELE Standing!

Thanks for standing with us!

And a happy birthday to our own family leprechaun....Tina's oldest boy!

Happy 33rd Birthday Anthony!

Too Fast...Too Slow

 

When Tina asked me to document her journey, I cried.  Anyone that knows me, knows that that isn't surprising.  I told her that I would try and keep it to the facts and throw in some humour along the way. Today, is the day for facts.

Did you know that approximately 3,000 people are  diagnosed with ALS in Canada each year?  Each year 1,000 people die from ALS, just in Canada.

What's too fast?

• ALS!  
• Last March Tina was able to work and do pretty much whatever she wanted.  This March she can hardly get out of chair by herself.
• In December, she could shower and wash her hair by herself and now she needs help with both.
• Two weeks ago her hands were not bad and now she can't straighten her fingers out.
• Even Mel, the Home Care has noticed how quickly things are changing.
• It's progressing too fast and we want it to STOP!

So what's too slow?

• approval of new medications for ALS.  This is copied from Leanne Yacyshyn who is suffering from ALS, " before being diagnosed with #ALS I never would have believed that for a disease so horrible, no effective treatments would be available."https://leanneislivingwithals.com/why-a-blog/
• getting in for appointments and hearing about when new medication can be started.

What else is too slow?  Alexa, how long?  130 days to Sister Three Cottage Time!  Alexa always adds, "it's going to be a good time."

Once again, we want to say thank you to those that have continued to shower Tina with blessings.  Nancy, a long time church friend, dropped off some squares last week with all the right ingredients to make them delicious.  Melissa, a friend of Tina's showed up on the weekend with another meal.  You have no idea how much these meals and treats are appreciated. They have also had to start a new row for hanging all the beautiful cards that they had received.

With only one hour of homecare a day, visits, calls and meals will be so appreciated.

Meal Train for Tina

We have 3 more followers on Tina's journey: Jane (Janie), a long time family friend and Kathie and Tammy who know all about STEELE Standing!  

Homework for the day:  enjoy every moment!  We don't know what tomorrow will bring but we have right now.

My dishwasher stopped working a couple of weeks ago.  I jokingly said to Tina, "you think you have problems, I have to wash dishes by hand."  We laughed and she told me that I needed to put this in the blog.  I hate doing dishes but I would willingly wash dishes for the rest of my life if Tina didn't have ALS anymore.  If only it was that easy.  

We are STEELE standing and it's time for me to go and wash my dishes.

Hey...Google!

Wednesdays are always a busy day...but who am I kidding, with Tina every day seems busy. While we were doing our morning chat Tina took a call for another appointment.  I said tell google to remember for you.  Tina said, "hey google, add to my calendar...." and there she had it!  So now with all her appointments she can add them to her own personal artificial intelligence.

Oh, can't forget to mention that Tina's neighbour brought over banana bread on Tuesday and when Tina called to thank Francis she said to let her know when they wanted more.  

Before we had talked to Tina, Janelle, the homecare angel, had been there.  Mom was there and chatted with us for a bit.  She had made a homemade chocolate pie for company.  An old friend came to visit.  Steve was actually in Carol's friend gang but we always shared our friends because our house was the hangout house.  We had a pool table, ping pong, darts and Pop Shoppe for purchase so who wouldn't want to be there.  Oh, and we had pretty cool parents too!

Steve brought gift cards from his mom, Lorraine.  She was a faithful lady in our church where we grew up and it was very thoughtful to bless Tina this way.

Tina then went for a mammogram....too much information?  We want you to understand that even the most regular, routine things are much more difficult when you are dealing with ALS.  For any woman that has had this unpleasant exam, you need to be able to undress, be put in awkward positions and be able to move your arms in very unnatural ways.  This is hard for most women but for someone with ALS I couldn't imagine.  They were really good and very understanding.  They provided Tina a chair instead of standing.  We are so thankful for people that understand and help.

After that appointment, Tina had a staff meeting.  It amazes us how she keeps busy.  Abby, Tina's manager told her about some case studies.  One of them was being done in Montreal and one in Ottawa.  

ION 363 ALS Case Study

Reldesemtiv

Thursday...."Hey, google, what's on the calendar for the day?"

• 9:00 a.m. - Janelle, the wonder woman of Homecare - shower and hair wash!
• 10:15 a.m. - chat with sisters
• 11:00 a.m. - Physiotherapist, Jennifer "doing extremely well" - a few new exercises
• 12:30 p.m. - Occupational therapist, Kathleen - found a walker that should work
• 1:30 p.m. - Nurse Intake, Amanda - oxygen 95 (we think it was 91 last time) and blood pressure 120/70 - doing good!

And today....the walker arrived.

Tina can still walk around but if the ground is uneven then she could use the support of this walker and give her the stability to keep from falling.

Donna, a friend dropped some food off through the day and then Barry and Judy (our first cousin) came and brought supper.  They didn't just drop it off.  They stayed and had supper with them and Tina loves it when this happens.  It's a double treat....food and a visit.

Another week has finished and hopefully the weekend is less busy for Tina and she can enjoy a little time away from Google!

If you are in the Napanee area and would like to become a part of the army that is helping Tina with meals, please click on the link below and you can chose your day/time and meal.  You can chose to drop off or better yet, set the table and eat with them at their house.  The meals are really appreciated.  

Meal Train 🍲

So I bought something today to hang in our bedroom and I thought I would share it with all of you.

Thank you to all those that have helped in whatever way. We have all been amazed by the outpouring of love and we especially appreciate your prayers.  💓

Hey, I see that Jennifer Lepage is following the blog.  Interesting story about Jenn...we had someone run into our house when we were living in Swift Current (should have locked the doors) and we had to call the city detachment for police help and in came Cst. Lepage (nee Steele).  I was reunited with a cousin!  👮🚓

We are all STEELE standing!!

Hey google....say thanks to everybody!!!

It Takes an Army

They say it takes a village to raise a child.  When someone gets sick and can't do the things that they need to do...it takes an army.

July 18, 2020

We are so thankful to the army of people that have jumped in to help at this time.  

Jenn, Tina's niece (my daughter), has been there most Saturdays to help sort, organize or bring laughter or perhaps that was Emma's job.  Emma is Jenn's daughter.  She has done manicures and pedicures (not her favourite).  Jenn has helped with the paperwork for things that are needed and has gone to appointments to be the second ear. She has thought of and implemented a meal train.  She has also decided to the do the ALS walk this year in June.

Austin, Tina's son is the exercise guy.  He does not love this job but he is the one that helps Tina do her stretches.  When you have ALS the stretches are important but you only stretch enough and never to the point of it hurting.  The "no pain, no gain" rule is out the window for this disease.

Mom has been the regular Wednesday visitor.  She comes in the morning and works at doing laundry, housecleaning, baking and sometimes is even the hair washer.  Her and dad have also jumped in to help Tina with the physical part of her work at the Salvation Army.  Tina continues to organize and plan what needs to be done and then has her army complete the tasks.

Homecare has been offered and this too is appreciated.  It may not seem as much as we had hoped but in these times of short staffed and cutbacks we are happy to at least see someone come in and help even if it is for one hour a day.

There are so many people that have brought or are planning to bring meals.  There have been phone calls, messages and people coming to visit.  People have offered to help in so many ways and of course, the visits are so appreciated.

As her sisters, we have been encouraged by the army that have surrounded Tina and have offered to help in one way or another.  We too, appreciate those that have reached out to us.

We especially want to thank those who are praying for Tina.  

For Carol and I, we want to thank Tina for being so strong.  I know that it can't be easy.  We look at you in awe.  Stay strong little sis but remember that no matter what we are STEELE standing with you.

Video Chats, Agendas, Plans and Updates

Since January 25th, Carol, Tina and I have been connecting by video chat from 3 different time zones every Monday to Friday.  Some times the calls are short due to appointments or work and sometimes they last for an hour or more. We never seem to run out of things to say or plan.  

On Monday, Tina didn't come on and Carol and I chatted.  We checked and found out that she was on the phone with someone about support.  We connected a little later and found out that they were working on a plan to get her some homecare (or as I sometimes make a mistake and call it daycare).  We started discussing the idea of booking a cottage for a week in the summer to be able to be together in person.

I spent extra time with Tina getting the background about her symptoms and diagnosis.  One thing Tina has not lost is her sense of humour.  This is what she posted on her facebook page.

All day on Monday we were sending each other cottage ideas...lots of ideas!!  The secretary of the group completed a spreadsheet with the pros and cons.  We knew what we needed and were looking for what we wanted.

Tuesday, we added more cottages and got more confused. Tina was already dressed and when asked about it, Tina laughed and said, "I did it all by myself."  It apparently took her 30 minutes and it almost made her sick.  We take so many things for granted and can complain about so many little things. I hope today you take time to be thankful for even the little things.

7:15 a.m. for Carol, 8:15 a.m. for Penny and 
10:15 a.m. for Tina

After our video chat, Tina had a visit from Agnes, a friend from work.  She had given Tina some goodies at Christmas and now they were able to have a visit.  Wanda, another friend from work had previously visited and gave Tina a Money Tree plant.  In the afternoon, Pastor Herb came to check in on Tina. It is so nice when people come to visit.  What a blessing when people take the time from their busy lives to slow down and visit.  It is so appreciated.

On Wednesday, Tina got a call from Home Care while we were chatting.  She will be receiving help  every morning starting on Monday.  Mom was at Tina's while we were chatting.  She has been coming on Wednesday mornings to help with laundry, baking and cleaning.  We are so thankful that homecare is being provided.  

Notice the intense looks

On Thursday, we narrowed down our cottage search and it was booked.  Tina was able to be driven out in the snow to make sure it was a good choice and we are all excited about a sister adventure.  Sister time with a lake and hopefully a loon to sing us to sleep.  

Pictures taken from booking site

These days Tina is excited about 3 things:  making plans, having visitors and food delivery.  Shortly after the cottage was booked, meals were delivered by the Royal Coachman.  Tina called me right away to let me know how good they were.  Thank you to all those who are helping with meals.

Clint, one of our cousins, came to see Tina on Friday.  Clint is such a sweetheart and brought flowers and stayed for a visit.  It's been awhile since they have seen each other but were able to reconnect like when they were kids.  Clint has been staying with his brother, Carl who is going through chemo.

Today is Saturday...we don't video chat.  What was Tina up to?  She was at her job at the Salvation Army.  Mom and Dad were the army and Tina was being the drill sgt.  It's great that she is keeping busy (and keeping mom and dad busy too!) 

So sister time....every week day morning from BC, Alberta and Ontario.  There have been tears (usually from me), lots of laughs, planning and solving each other's problems.  Carol and I have our coffee in hand for the call and Tina is ready with the agenda.  The weekend seems strange now without these video chats and leaves us looking forward to Monday to reconnect.

Thanks for following along...we are STEELE STANDING!

Please keep praying!