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….

Flying Home

I’ve been staring at this empty page for a while.  I know that there have been so many following Tina’s journey and looking for updates.  I have continued to do the posts because I promised Tina that I would.  I have many moments when the words that I put in print hit me…this is really happening to our sister.  It is in those moments that my emotions pour out in tears.  

Today Carol will be flying back home.  She has a long day of travel but right now she is at the hospital with Tina.  I know that my dear sister will be strong saying goodbye and then walk away in tears.  There is nothing easy about saying goodbye.  

Carol said that they were tying to brave
saying goodbye! 😢

Mom will replace her at the hospital when dad drives Carol to meet Jenn.  The trip will continue with Jenn dropping her off at the airport.  She won’t arrive home until after midnight her time.

Yesterday, Tina had a CT scan to make sure everything would be okay when they insert the feeding tube.  Dr. Robertson will be doing the procedure when it is deemed necessary.  He has assured her that the procedure will be different then what she experienced in Kingston.

Say a prayer today for Carol as she travels.

STEELE Standing?

Doctors’ Appointments

Today was Tina’s appointment with multiple doctors.  In January, she was able to walk into the appointment.  By April, she walked with assistance.  She was wheeled into the appointment in June.  This time it was a virtual meeting with the multiple doctors from Providence Care in Kingston.

Virtually, she talked to Dr. Ritssma, Dr. Melanson and Dr. Fitzpatrick.

They were all surprised with the rapid advancement of the ALS. The last time she saw the doctors, she was able to move her legs and stand a short time.  The only movement she has now are 2 fingers on each hand and her ankles. She currently wears special boots to keep her ankles from turning in.  She also has a harder time swallowing especially after talking too much.  Her oxygen level is down to 92 from 98.

Dr Melanson wants to push for Tina to get into Providence Care.  They are equipped there to provide Tina with the best quality of life at this time. 

Dr Fitzpatrick said that Tina’s lung function is down to 37%.  He also recommends that Tina should be in the Providence care unit in Kingston.

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In August, I added a news story about Bjore Salming, a retired NHL player that played for the leafs.  At that time he was announcing that he had been diagnosed with ALS. In that article he was quoted saying, “I do not know how the days ahead will be, but I understand that there will be challenges greater than anything I have ever faced.”

Yesterday, there was an update that said that he has now lost his voice, his family is exhausted and he is depressed.  He lives in Sweden but came to Canada to see a doctor and was prescribed medication.   The drug was sent through the mail to Sweden but customs wouldn’t approve the package because it is not an approved drug in that country and it was sent back to Canada.

If your are interested in reading the whole article, click on this link:  Bjore Salming journey with ALS

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We are very thankful that Tina STEELE has her voice.  For the most part, she had taken what has been given her and rolled with it.  She has kept her smile and shares it with many.

We are STEELE hanging  in there….

Rough Waters

For 19 years, I was a pastor’s wife.  During that time, Ron and I had many times to grieve.  We have sat by hospital beds and watched someone take their last breath.  We have held the hands of people who have just said goodbye to their loved one.  I have given many hugs to family members at a funeral and tried to offer words of comfort. Since becoming an RCMP spouse, I have attended a memorial service for members that have lost their life in the line of duty. It took my breath away watching a young son solute the flag while honouring his dad.

Grieving is hard.  We can grieve many things and I have discovered that we all do it in different ways.

When Tina was diagnosed with ALS, our grieving started. Carol, Tina and I have grown closer through this devastating news.  When we use to have our morning video chats, we talked about everything and anything.  We were able to turn something so negative into something positive.  We STEELE hate ALS but we are thankful that our SISTER THREE relationship has grown closer.  We are learning to swim through these waters and the ocean hasn’t been too calm.

I have seen super strength develop through this time.  Watching my mom look after her youngest daughter has shown amazing strength.  Seeing Carol fly across the country to help Tina, when she is still grieving a grandson, shows love and devotion. I have cried more tears over these months and am told that that is the way my body is releasing the pain. I have heard from many how Jenn took time off work (losing income) to be there with Tina.   I can’t even imagine how Tina’s boys are dealing with all of this.

When someone you know and love has a disease that will cut their life short it is the time to focus on that person.  It’s the time for no regrets. It’s the time to surround them with the people they love and who loves them. It is the time to STEELE make good and positive memories.  

I have watched from a distance many of you connecting and reconnecting with Tina.  You have been amazing to show her love.  She really appreciates your love and the support that you have given. You are truly a blessing at this difficult time.

And then there is Tina.  This is not the choice she wants.  She too, is grieving, probably more than all of us.  She has shown resilience beyond what anyone could ever imagine.  She offers a smile to those around.  She has gone through all of the emotions and yet, I feel like she is staying strong for all of us.  Tina has said, “that if I don’t get healed in this life, I will be in the next.” 

We keep praying.  

We are all going through different emotions at this time and the time is not to focus on what we are losing but what we have right now.

Thank you Tina for showing us that.  You are STEELE amazing and teaching us so much.

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I found this article about grieving from  Vita’s Health

Feelings Often Experienced While Grieving 

Sadness 

• The most common reaction, sadness is sometimes exhibited by crying 

Anger 

• Frequently felt and often one of the most confusing feelings 
• Unacknowledged anger can lead to complicated grief 
• Turned inward, anger can cause depression or suicidal feelings 
• Anger comes from two sources:
  • A sense of frustration that the death was not prevented 
  • A regressive or more childlike reaction to being abandoned 
• A mourner might blame someone else for the death to make sense of the loss or to validate that it could have been prevented 

Guilt 

Guilt is often associated with something that happened or something that was neglected around the time of the death 

Anxiety 

• The more intense and persistent the anxiety, the more outside help is needed to process the grief reaction 
• Anxiety comes from:
  • Fear of being unable to care for yourself 
  • Awareness of your own mortality 

Fatigue 

• Tiredness and fatigue are often seen and experienced as apathy and listlessness

Shock 

• Can occur with both sudden and anticipated deaths 

Loneliness 

Helplessness

Happy Sunday

Carol sent me a picture this morning and it made me smile.  I thought I should share it to make you smile too.

STEELE together….my beautiful sisters!

Look For Something Positive

Tina is feeling better thanks to the antibiotics.  She is eating a little better but only small portions. She has better energy but tires easily.  She can handle sitting up for about two hours.  She goes to bed early.

I don’t have a lot of news but I do know that Kate came and gave Tina a manicure….one of Tina’s pleasures.

Carol and mom continue to do the day shifts. It’s hard to think about Tina being in the hospital but she does have the care that she needs there.  She is on IV constantly.  Her vitals are closely monitored.  Her weight has stabilized so the feeding tube has been put on hold. Her breathing is more shallow which means that she needs to be sitting straight to help her swallow.  Choking is always a concern.

Today we are thankful that Tina is feeling better.  We are thankful that she has been outside a couple of times this week.  We are thankful that Carol is there to help.

Today look for the positive …look for the good in people…take time to encourage ….look for the positive.

We are STEELE Standing!

Some have asked about Tina posting on her page.  She is unable to do that anymore.  She is not even interested in looking at Facebook these days.    

100th Post

On February 1st, we started the “I’M STEELE Standing” blog.  It was less than a week after our world was shaken with Tina’s diagnosis.  Here we are 100 posts later.  The ALS has progressed but we are STEELE Standing.

Tina is bed ridden but she STEELE has her smile.  She STEELE has her army surrounding her.  Encouragers are encouraging. Prayers are praying. Helpers are helping…

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

Tina seems to be doing better at the hospital.  She needs a lot of care and they are there to provide the medical needs.  Family have still been doing shifts to be there to visit, give her drinks, feed her meals or take her for walks.

On Tuesday, Judy was at the hospital with Tina.  She bundled her up and took her out to get some sunshine.

Mom has been going up early to help Tina.  Carol comes for the afternoon.

Carol took Tina for a little stroll today.  The nurses come to help get Tina in and out of the wheelchair. They use a lift to safely get her out and back in to bed.

 She was very tired and ready to sleep at 6:00 pm. 

Tina continues to lose weight.  She still hasn’t had the feeding tube inserted.

As I sit here, three provinces away from Tina, my heart hurts.  💔

We are STEELE Standing…we are standing for Tina.

A Short and Sweet Update

We were all a little concerned with the pneumonia diagnosis yesterday.  Thankfully, Tina was started on antibiotics right away to try and get ahead of it.

This morning, Tina asked google to call our very worried mom.  She sounded much better to everyone’s relief.  

Carol sent me a message this morning that Tina was thinking she was feeling up to going to the gift shop to have a look.

Carol and I both agree that Tina is one tough girl.

It’s always good to be able to write a post about something positive.  We know that life is very short and, sometimes not especially sweet, but we will take every day, every moment that we have to try and be positive.  Tina has taught us that.

Speaking of short and sweet….

You are Appreciated!

Carol arrived in Ontario in time for Thanksgiving and today she is thankful that her luggage found its way to her.

Yesterday, her and mom spent some time with Tina.  Tina’s spirits were up and she managed having a little bit of a turkey dinner.  She even enjoyed a piece of mom’s pumpkin pie.

Today, Carol was back to the hospital with Tina.  Tina wasn’t having a great day. She didn’t have much of an appetite today and was pretty tired. They ran bloodwork because she had been nauseous and wanted to make sure that she didn’t have an infection.  Through the tests, they found out that Tina has pneumonia again.  They started her on antibiotics.

Tina still hasn’t had the feeding tube inserted. Still waiting.

Tina still needs someone there through the day to help feed her and keep her company. 

On this Thanksgiving Weekend, we want to thank everyone that has helped in whatever way.  These past few months have left us grateful for those that have helped Tina.  Visiting or staying with Tina was huge.  The many meals and treats were greatly appreciated.  Your prayers and encouragement have kept us all going.

Thank you for STEELE Standing with us.  We appreciate you!

Happy Thanksgiving From The Steele’s

We should be thankful all year but it seems like most of us focus more on it on Thanksgiving Weekend.  This weekend always reminds me of the many family times that we spent at the hunting camp.  When it is a nice fall day, I will say “it’s a hunting camp kind of day.”

It was the day that I always looked forward to and it never disappointed.  Mom would plan the menu and we would bring the extras to go with it.  We sometimes had Turkey or maybe hamburgs.  The food was always good and it didn’t really matter what we had.  

There were usually family add ons…like the McCutcheon’s or cousins came or the kids’ friends…the more the merrier.  There were quads and dirt bikes and I always enjoyed the walk through the beautiful trees while rustling through the fallen leaves.

This year, Carol will be with Mom and Dad and spending time with Tina.  I am sure there will be laughter, recalling memories and maybe some tears and I know there will be food.

This year, I am thankful for the memories.  I know that there are many more memories to make but today I hold unto the memories of so many Thanksgivings of the past.  Good memories!

Happy Thanksgiving from our family to yours….we are STEELE Thankful!

Self Care is not Selfish

I know that a lot of you have said that these updates are so hard to read.  Many have said that they bring tears.  When I read that it made Tina cry…it took my breath away.  I wondered if I should stop. Tina wants her journey to be documented.  It’s hard to write these posts…hard to read and even harder for Tina to live it.

I think we would all agree that Tina has the right to be selfish at this time.  I really wouldn’t call it that though.  She is trying to put all the energy she has left to get through this. She is strong.  She has carried us all through with her strength and attitude.  Now is the time for us to forget about ourselves and focus completely on Tina.

I got to talk to mom and Tina for a few minutes this morning.  Tina had a headache but sounded relaxed being in the hospital. Mom sounded relieved that she was there getting the care that she needs which helps Tina not have so many anxiety moments.

Carol is flying to Ontario tomorrow.  She will be able to spend lots of time with Tina over the next couple of weeks.

We are STEELE standing.

More Questions Than Answers

What? 

Tina was at KGH (Kingston General Hospital) with the full intention of getting a feeding tube inserted.  As mentioned before, she was in a lock down ward due to a COVID outbreak. Imagine, if you can…being in a room by yourself, unable to move and with the fear of choking. Anxiety will definitely kick in and it has.  Now, it’s time to insert a feeding tube but first they need to do a nasal insertion. I’m not a medical person but it sounded like they needed to do a barium before doing the procedure. 

I don’t know all the details but there were problems with the nasal insertion. Tina then ended up with a migraine and refused the procedure.  The hospital called and said that Tina was being discharged.

Where?  

I had lots of questions and one of them was “where is she being discharged to?”  I assumed, at least, back to the Napanee hospital. No, she was being discharged to go home.

When? 

Tina was wheeled down to the front door at the hospital. She was very nauseous and was throwing up.  I know that this is a lot to take in.  I can’t imagine the fear that Tina had as they drove the longest 40 minutes of their lives.  Tina feeling so horrible and afraid she might choke.

So Why?

I don’t think I am alone in asking why would an ALS patient be discharged from a hospital in this condition?  Why, if they were releasing her, wouldn’t they send her back by ambulance to the other hospital?  Why didn’t they sedate her, or at least give her something to relax her, before starting this uncomfortable procedure.

How?  

Tina is at home.  There is no homecare lined up.  She still needs the feeding tube.  How is this possible?  How can mom take care of her needs without burning out? How?

When Tina got home last night, mom came up and helped get her showered and in bed.  She was tired enough to sleep through the night. Tina was feeling better this morning. She had a carnation breakfast and some muffin.  The nurse, Angela, was there and started the IV.  Dr. Liz came and talked to Tina.  She said that there might be a surgeon that could do the feeding tube in Napanee. 🙏Tina would like (not like, understands the need) to be admitted to a long term facility and would prefer Providence Care in Kingston.  This would be the best option at this time.  Hopefully a bed becomes available for her soon.

Dr. Liz has been so amazing to try and find the answers when there have been so many questions.  Angela, the nurse, has responded so quickly in helping with Tina’s needs.  

So we wait…with all of our questions:

• What next?
• Where will Tina be when a long term facility opens up?
• When will she have the next chance for a feeding tube?
• Why would she be released from a hospital when she needs so much care and no one is set up to help?
• How is Tina going to be looked after until a facility opens or more homecare is provided?

What we do know is that Tina is home.  She ate a little Mac and Cheese for lunch, watched a little tv and is having a nap.  We know that Tina is loved by her family and so many friends.  We know that people care and are praying.  We know that Carol will be there in 5 days.

We know that we are STEELE Standing even when we have so many questions running through our heads.

Off To Kingston

Tina got to have her birthday party on Saturday and then today she was transferred to Kingston General Hospital. They aren’t allowing any visitors due to COVID restrictions.

She should have the surgery Wednesday or Thursday to install the feeding tube on and be transferred back to Napanee either Friday or Saturday.  Tina was told that they were doing the tube Tuesday and be discharged on Thursday.

So as far as we know, Tina will have the surgery sometime and be released sometime after that?????

Some days my mind thinks about how life use to be.  I think about how Tina kept busy juggling two or three jobs.  I let my mind wander to the Halloweens when we would take the kids trick or treating.  I can even smile when I remember Anthony, Tina’s oldest, dressed like a present.  Each door we would have to wait until he got crunched down in his box costume before we could knock on the door.  I think about the summers when Tina and the boys would spend time with us.  Our last time to the St. George’s Lake cottage, Tina had just had her gall bladder surgery.  She wanted in the water so I helped her flop into a giant tire. I remember that it was easier getting her in the tire than out. Those are the times I like to think about.  

Then reality hits.  I shutter thinking about the tubes that she now has connected to her. More often than not, tears flow even when I say her name. Sometimes I have a hard time breathing when I hear that she has lost another battle with her body. 

When Tina asked me to follow her journey through a blog, I knew that it was going to be hard but I also knew that I needed to do it for her.  This is a journey that I would not wish on anybody…it’s a journey that needs the support of all of you and we do appreciate you all.

Pray for Tina as she once again goes through another procedure.  Please pray that she will have peace.  Pray for Tina’s boys…and mom and dad.

We are STEELE a here, STEELE Standing and Steele needing your prayers.

Being Carried…

 I wanted to make Tina’s birthday and her party completely about her.  I felt we all needed a reprieve from ALS.  I wish that Tina and could enjoy a true reprieve.

When we were pastoring, a lovely man in one of our churches use to say,”Life is hard and then you die.”  As a young mom with two sweet children and a wonderful husband, I thought that was a pretty negative statement.  Then life happens..I have thought of Vern’s statement over the years.  Life has thrown a lot along our way.  Life hasn’t always been easy and many times seemed far from fair. I have tried to rise above the negatives and have sometimes succeeded and sometimes have ended under the covers crying. Yesterday was one of the days that I needed the covers and Kleenexes.  I wanted to be there for Tina’s birthday because we really don’t know how many more she will have.

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Tina has lost all muscle in her arms.  She has lost over 25 pounds. 

“The Lord replied, my precious Tina, I love you and I would never, never leave you during your times of trial and suffering. When you saw only one set of footprints, it was then that I carried you.”

Perhaps Tina isn’t STEELE standing but rather STEELE being carried by Her Lord.

Birthday Celebrations

The birthday girl made it to her party.  When they first started planning, some of us were sceptical that she would not be feeling up to it.

The queen was rocking her crown for the festivities and had lots of smiles through the day.

Jenn had sent us pictures of the decorations.

There was a nice turnout of friends and family to wish Tina a Happy 55th birthday.

Cake was served and there was lots for everybody and enough for the nurses at the hospital.  They have been so good to Tina.

Tina did really well keeping up with the celebrations but she started to fade at 3:45. 

She loved the visits from people.  She has lost a lot but she has her smile and laughter back. 

She was ready for her bed back at the hospital after the afternoon festivities.

Thank you to everyone that helped plan and to all those that came to say hi to Tina.  I know that you made her day by being there.

Tina, with help, put this note on Facebook, “Thank you for the many Birthday Wishes .. It was wonderful to see so many and I enjoyed each one and the time you took to share with me this special day.”

We are STEELE Standing and she’s probably sleeping!