Another Update in Tina’s Journey

Tina has been feeling a little better emotionally.  Mom said that she has been eating a bit better. On Thursday, she had the catheter installed.

She will be admitted to the Napanee hospital this weekend and then transported by ambulance to Kingston on Monday.  She will have a feeding tube put in while at the Kingston General.  Mom thought she would stay there one night before being sent home.

Mom questioned why she needed the feeding tube when she is eating a little better.  The answer was that she needs to get it done now when it is not totally necessary in order to have it when she will need it.  She continues to have IV to keep her hydrated.

It was hard for mom when Tina told her that they were applying for a long term facility.  For all of us, it is so difficult to think about.  We understand that it is necessary but it is hard to grasp that this is where we are.

Jenn felt it necessary to tell Tina about the birthday plans. Surprises aren’t the best for her.  They are all hoping that she will feel like this gathering.  I would recommend coming earlier as she might tire out by 4:00.

When: Saturday October 01 

Time: 1-4pm

Where: Roblin Wesleyan Church

(Her actual birthday is the 29th)

Cake and snacks will be provided! 

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Carol will be travelling to Ontario in 16 days.

Today is my birthday and I am celebrating in Kitimat, BC with Stephen and Kylie. It’s just what I needed right now.

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ALS continues to take more and more away from Tina.  It is stealing Tina’s dreams for her future.  It is a cruel and brutal disease.  We continue to get and give updates.  It’s hard to hear and heartbreaking to know that this is happening to Tina.

Once again, we thank you for STEELE a standing with us and supporting Tina.  We appreciate everything you do!

Broken Heart to Broken Heart

  Jenn iscurrently working on the application process to a long term facility.  It's been a hard month.  It's actually "been brutal."  Every time Tina has a back spasm, she wonders what else in her body is shutting down. 

Tina knows that things can't continue the way that they have been going.  There have been great people that have been helping but there is never enough.  There needs to be at least two people to help with Tina now.  They continue to struggle with PSW's not showing up.  This causes a lot of anxiety to her when the scheduled shifts of homecare workers don't arrive when they are supposed to be there.

Tina came to the conclusion that they need to apply to a long term facility.  They were trying to prepare themselves for this decision since the day that she was diagnosed.  They had expected it to come much later than this.  

Tina doesn't want to be read to or to watch tv.  She barely feels like talking.  Her days are filled with sleeping or sitting quietly with her eyes closed.  Her attention span is very short and so is her tolerance for most things.  

Tina started new meds and it is the hope that these will give her back a little spark and take away some of the anxiety that has caused her to be so nauseous.  Today was the first day in two weeks that she hasn't had a panic attack.

The occupational therapist was advised with how quickly things were progressing.  She was shocked at the speed that the ALS was moving.

The nurse has ordered the catheter and that is the next step for Tina.  She continues to need IV daily to keep her hydrated.  A feeding tube has been discussed with Tina for the future.

So here we are...Tina has picked their top four choices for the Long Care Facilities.  They can pick up to 5.  In order for the process to be expediated, they need input from the professionals that are aware of Tina's fast moving condition. Tina's nurse and family doctor understand the urgency for a care facility.  They need input from the neurologist.  He hasn't been returning their calls.  Tina was told that this was the slow moving ALS.  In less than 8 months from diagnosis, she has lost all of her mobility and this disease has taken over so much.

Once the application is completed and the choices are submitted, they will need to accept the first opening.  If it isn't their first choice, Tina can be moved to that facility when space is available.  (This is so hard for me to type...how can I be talking about my sister needing this type of care?....our hearts are broken.)

This post has taken so long to type....how do I tell you all we have gotten to this stage?  We know that this step is necessary for Tina's care and important for all the caregivers that haven given so much love, time and attention to Tina.

Please pray that the right care facility opens for Tina.  We need a smooth transition.  Please pray for Tina as this will be a hard move for her.  Pray for the boys....this isn't what they wanted.  Pray for Mom and Dad...no one ever wants to see their daughter go through this.  Please remember Carol and I in your prayers...this is so hard.  Pray for Jenn and especially Emma who has been there for Aunt Tina.

We are STEELE here....leaning on you and each other.... 

"It's Your Birthday But I Get the Gift"

It was Carol's birthday yesterday and she was able to spend some time at the beach and have some sushi and cake to celebrate.  She also spent some time on the Westjet site to look for tickets and pulled the plug and booked tickets.

When Carol told Tina that she was booked to go to Ontario later in September, Tina said, "It's your birthday but I got the gift."  I think Tina was pretty happy to get that news.

It will be nice for Carol and Tina to have some time together.

*****

Yesterday,  Jenn and Emma spent the day with Tina.  They got there a little later because of an appointment.  Tina had learned two things today:

1) she can ask google to set an alarm to get people to help her.

2) That Google does not understand her correctly when she has the bipap on.  She tried to call mom on google and ended up having to hang up on 5 different people before she got mom.  So if you are on Tina's contact list and got a hang up from an unknown number yesterday, that was Tina!

Tina said that she is trying to be a good girl and use the mask more to help with her breathing.

We are STEELE standing and one of us will be flying next month.

We really appreciate all your comments either on facebook or on this blog.

Note:  If you leave a comment on the blog and you would like to have us know who you are, click on the down arrow beside anonymous and choose Name/URL and then enter your name.  You don't need to put anything in the URL.  We will then be able to put a name to the comment.

Princess Tina and Her Subjects

Sunday morning arrived and although Tina wanted to go to church, we decided that we didn’t feel comfortable getting her out of the cottage.  Carol and I had walked around the cottage assessing the situation and the choices were 1) going out the front door and having to go down 3 cement steps.  We shuddered imagining the possibilities of accidents happening or 2) having her go from the sliding door, go down two steps and then being pushed around the cottage in a wheel chair over soft grass.  We didn’t know if our backs could handle that direction.  We decided it was best to stay in the cottage for the day.  

The forecast was calling for lots of rain but we managed to be out on the deck for a good part of the day.  

We had barbeque salmon, Mac and cheese and veggies for lunch.

I put bread crumbs on the Mac and cheese and it caused Tina some choking which made us scrape the crumbs off and try again.  It was a little scary.

In the afternoon, Ron showed up with Sarah and Emma and some food.  They all went for a swim and then Ron left because he thought that he was too outnumbered.

The waves calmed down and the girls went out to play in the peddle boat and it proofed to be a good entertainment for us watching from the deck.

She was really enjoying it, it just doesn’t 
show in this picture. 😉

Janelle came and was able to give Tina an afternoon bath and get her hair French braided.  Sarah lined up and got hers done too.  We sat out on the deck until the wind came up.  We were just trying to figure out all the sleeping arrangements when the phones sent out an alert

So our first full day at the cottage, we had no power.  Our second day, we have a tornado warning.  This week is proving to be quite the adventure.  Sarah, Emma and Carol were out trying to snap some pictures of the light show.

Picture by Emma

Picture by Sarah

The lightening continues to flash across the night skies.  The gentle breeze blows through the cottage windows.  We can hear the rain coming across the lake.  The Princess’ kingdom is getting ready for a storm. Her loyal subjects have been cautioned to use the washroom in case the storm knocks out the power.  She has instructed us that we will need to get water from the lake if the power goes out and we need to flush the toilet.  Life is quite exciting here at the cottage.  You never know what the next day will bring.

Princess Tina wishes you all a good night.  She is STEELE reigning in her little kingdom.  We are STEELE following her commands.  We, her loyal subjects need to get some sleep so we can address her needs tomorrow.  She actually calls us her minions.  We welcome anyone who wants to come and relieve us! 🤪

The Countdown IS ON!

I may be updating the blog a little more over the next while since we are getting close to our Sister Three Cottage Time.  The western sisters are on the move.  Sarah and I are in the Calgary area tonight.  We wanted to come a little early to see how things are going at Stephen and Kylie’s.  Their house is all packed and tomorrow things will be loaded and they will start their 15 hour trip to their new home.

One of Stephen’s buddies came over to say goodbye.  He even brought me a signed card…google Kevin Scott, Saskatchewan Roughriders.  That’s a football team!  🏈 I found that out when I was in Swift Current. 😂

Meanwhile, further west, Carol returned home from Victoria and did her 24 hour check in for her flight to Calgary.  We will pick her up tomorrow afternoon.

And back in Ontario, two Alberta guys came to visit Tina.  Both Kevin and Ron are Napanee boys but are now Alberta men.  Way back when they were younger (way, way back) they would constantly laugh.  They may have gotten older but the laughing always continues when they are together.

Smile!

Okay, Kevin what did you say?

I’d say that they got Tina into the laughing too.  Kevin’s mom isn’t doing well but he took time to come and visit Tina.  Thanks Kevin.

I’m not sure if they heard that it was pedicure day at the house and thought they would get in line.

There are no pictures to either prove or deny that they got their toes done???

Sarah enjoyed the hotel pool for a little bit before we settled in for the night.

We are STEELE working to get to Ontario.  We are STEELE making things happen to get to the cottage.  We are STEELE laughing especially with Kevin is around!

Thanks to Lynda C for bringing dinner.  It’s always appreciated.

Putting Up With The Rain and Rising After a Fall

On Thursday, Emma was in charge with Tina.  They had a little incident.  Tina was in the bathroom and fell.  Emma knew exactly what to do.  She called for help but it was going to be awhile so Tina, being Tina, told Emma to go and get a pillow and the tablet and they could stay in there and play games.  That's how our Tina is...working to make the best of a bad situation.  

Respite came in the evening as scheduled.

Canada Day was on Friday.  Emma got the day off and went off to join in at the celebrations in Bath, Ontario.  Mom and Dad came and it was so nice that they and Tina sat outside most of the morning.

On Saturday, Emma was on duty.  Emma set up a lemonade stand and got rich.  I think she made around $14.00.  

Picture taken by Emma

On Sunday, Tina fell when they were on their way to the car for church.  She hit her head on the car and hurt her hip.  They had to make a decision to see if they should go to church or not and Tina made the call to keep the plans and go.  At the church, they are able to sit in the car and listen to the service through the radio.  This day, Pastor Herb came to their car as planned and handed the mic to Tina.  She shared her story with her church family.  Tina is not a crier (like her sister) but she broke.  Emma was sobbing in the backseat and Tina could even hear Pastor Herb sniffle.  I'm sure that if she could see and hear others she would have noticed many more grabbing a tissue.  The services are usually recorded and should be available on YouTube in a few days.  I will keep you posted and share the link again if it is there for any of us to listen to.

When they were leaving church, they got a call from another pastor and his wife.  Pastor Burt and Dawn from the Wesleyan Church in Roblin were at Tina looking for a visit.  They were gone by the time that she got there.  

Melissa supplied dinner for them.  She made them a spaghetti casserole, salad and banana bread.

In the evening, Tina got out for a walk.  As they strolled along, Tina in her wheelchair, Tina said, "I needed this."  It had been an emotional day.

Today was supposed to be a respite day but the worker was sick and so mom and dad showed up to back up Emma.  The nurse came and checked Tina over from her fall yesterday.  She has hematoma on her hip.  I found out that this is a bad bruise.  It happens when an injury causes blood to collect and pool under the skin. (from myhealth.alberta.ca)  These are more dangerous for someone like Tina.

Tina (with Emma's help) showed us her new hat that she got when Judy and her were out last Tuesday.  Tina liked Judy's and wanted to get one for her convertible times.  Two cool ladies!

Picture taken by Emma

It was another beautiful day in Ontario so mom and dad were planning to sit outside with Tina while Emma continued her lemonade business.

*****

For Carol, she is at home on the island with her hubby and two dogs that help her smile.  She is working hard to find the right tenants for their rental cottage.  Screening potential renters is a big job.  You want to get the right people living next to you.  

For me, I have a house full of fur. 

Stephen and Kylie were able to find a house at their new posting and are excited to be one step closer to their new life in a different province.  We are happy for them and sad for us.

Ron left for Ontario this morning.  He talked to his mom's doctor yesterday and was advised to try and get to the hospital as soon as he could.  I wish that I could be there for him and the family but there were just too many appointments and plans to change.  

Another week closer to our cottage time.  We all are nervous about that week.  We want to make good memories and are hoping and praying for a nice week without any emergencies.

We are STEELE breathing and we are STEELE standing or sitting.   We are STEELE planning and STEELE seeing rain around us and looking for that rainbow.

Life is Too Short

On Tuesday, we had the "talk."  Tina wanted us to be aware of her wishes.  I'm sure many of you have had that necessary chat with loved ones but this was a first for me.  We are continuing to hope and pray that we won't have to come to that time for quite awhile.  

It is so hard to be sitting provinces away.  Carol and I both want to be closer to visit with Tina and help with her needs.  I can't tell you how many times I have gone to the WestJet page and looked up flights.

And then in the afternoon, Carol called with the saddest news ever.  Her precious 17 year old grandson had left this world way too soon.  Our hearts are broken.

It actually feels hard to breathe right now and it is so hard to even type this because it makes it more real.  This is not supposed to happen.  Jen, James and Carter had moved to the island 5 weeks ago.  These past five weeks were a time of reconnecting and Carol was so enjoying having these special moments.

December 15, 2004 - March 29, 2022

Carter, you are loved and missed!

James, Jen and Taylor….we love you! 

Our hearts are broken and somehow we are STEELE Standing but it’s hard.

Please pray for Carol.  A grandmother’s heart has been crushed.

Continue to pray for Tina.  She has not been feeling well all week and this news has been very hard.

What Gets Us Through the Day?

We haven't missed a week day of our video chats since the ALS diagnosis.  Lots of times we spend an hour chatting about what we did the afternoon or evening before or talk about the plans for that day.  We ask questions about these events the next morning.  There always seems to be something going on between family situations, appointments or just for fun things.

This morning Carol joined late due to talking to another family member.  Tina and I had already been chatting for awhile.  She already had me in tears.  I sometimes wonder how we are going to get through this and then I am always drawn back to how strong Tina is.  I know that she has times of struggling.  I hope that in those times we can be STEELE strong for her.

This week, Tina had a zoom meeting with ALS and Homecare.  They were glad that homecare has started.  They would like to see a nurse coming to the house for two reasons.  A nurse could administer the medication that Tina had declined previously.  It was offered to her if she was willing to come to the hospital 40 minutes away and have it administered intravenously for 30 minutes.  This would be approximately a 2 hour commitment every day.  If Tina had a daily visit from a nurse then she could have this done at home.  This medication would add some years of life.  The other reason to have a nurse now is to have one in place for when she really needs one.  We all know that the medical field is stretched thin and getting a home nurse when you need one might be too much of a wait when it is really needed.

Through this conversation, they also advised her to move her google to where she would be sitting most of the time so that she could ask it to make phone calls if she ever fell and needed help.

Back to the reason for why tears came this morning.  In Tina's ALS meeting, they told her to make sure that she had her plans in order.  When I hear my baby sister say something like that it brings tears.  I know that none of us know when that time will come and we all need to be prepared.  These are the things that Tina is dealing with now.  She wants to share with us her wishes and we want to be able to support her in the decisions and in the discussion about it. We want to stand strong with her. We didn't start this talk yet and plan to get into it next week.

At the end of our video chat today, Carol sighed and said "What gets us through today?"  We needed to look at some positives.  We are surrounded by family.  We have a cottage booked for our summer "Sister Three" Vacation.  We are STEELE standing.

"I look to the mountains; where will my help come from?
My help will come from the LORD, who made heaven and earth."
Psalms 12:1-2

This week....

• Larry and Barb Wilson brought in a dinner for Tina and Austin.  Tina excitedly told me, "there was apple pie!"
• Casey Distefano, a childhood friend, came to visit.  She said that the blog is an "eye opener."
• Pastor Herb stopped in and dropped off something from the ladies at the church.
• Tina had a zoom meeting with ALS and Homecare.
• Janelle, Tina's homecare worker, has been there to help each day for one hour
• Mom came on Wednesday to do baking, cleaning and laundry and visit with us via our video chat.

Tina has also been working on some t-shirt ideas for our get together but I'm sure that we could open it up to anyone that would like to be STEELE standing with Tina.

What do you think?

Welcome to a couple of blog followers:

• Melissa Price, friend of Tina (and in Tina's words, "she's a sweetheart.")
• Corinne Brown, friend of mine whose mom had ALS and I know will be a great support.

We have had over 500 views of the blog this month.  Many have commented via facebook or private messages.  We appreciate all of your support and especially your prayers.

We are STEELE standing....thank you for standing with us!

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!