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.

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.

She’s Got Her Smile Back!

Tina was admitted to the Napanee hospital yesterday.  

It was so good to see her smile and laugh.  Jenn said that she had been joking on Friday when they were given the instructions on the lift.  When they had her up in the lift, she asked if someone could push her so she could swing.

After so many weeks of Tina feeling down and discouraged, we are so thankful to hear that her she is feeling a little better emotionally and it was great to see her dimples in the picture.

So we are very thankful that Tina STEELE has her smile and sense of humour.  We are STEELE standing.  We are grateful for the updates especially when they include a smiling Tina.

Another Hard Day

Mom had gone to Tina’s last night to check on her.  Tina wasn’t even talking.  She had thrown up a couple of times and was on IV.  I shutter when I think of Tina being sick.  How does a person do that without choking when they have no control over their body.

This morning, Carol was able to talk to mom and Tina for a few minutes.  Homecare had been there and Tina had been bathed and then they did exercises.  Mom was able to get Tina to eat a muffin and some instant breakfast.  She doesn’t need IV today.  She was feeling a little better but looked pretty tired so the conversation was short.

Our hearts are heavy but we hold onto any positives.  She ate.  Carol was able to have a short virtual visit. She was able to have a bath and get her exercises done.

We are STEELE Standing…

Casey just sent me this message and I wanted to share it here:

Good morning 😊 saw Tina yesterday. You've probably heard, but in case you didn't she had a rough night up till 3:00 in the morning puking. I think from a McDonald's chocolate milkshake that she was craving at bedtime 😄

I was trying to be there for 8:00 so your mom could have the day off and I could help get her up with the PSW, but apparently she had been texting me to come a little earlier but I didn't have my phone on, she really needed to pee! But I did get there in time 😀

Had to take the morning really slow because of a gag reflex and still feeling nauseous from throwing up. So no morning routine but did manage to eat half of one of your mom's chocolate chip muffins and some chocolate milk. Her eyes were quite puffy and runny, which she says is pretty common in the morning. She was feeling bad that she was poor company for the PSW and I (shaking my head) she also had a headache 😟

I stayed until around 10:00 when her friend Kate arrived, we toileted her and she seemed to be in better mood by then. 

We shared a few memories,  one of which was a party in your parents basement and someone, can't remember who- Brad maybe? Asked Dennis C for a Pop Shoppe - Dennis asked what flavor? And "surprise me" was the answer, he was gone for like 15 minutes and came back saying he couldn't find that flavor 😄

Praying for her healing 🥰

Thanks Casey for sharing and for being there for Tina! ❤️

Happy Birthday Carol!

 Today is a special day in our Sister Three World.  Our oldest sister, Carol is celebrating her birthday.

Carol is a wonderful sister.  She was amazing at the cottage looking after Tina's needs.  She is a beautiful person and I always enjoy the times that we can spend together.  

She enjoys it when people stop in to her beautiful part of Canada. I am sure that her Prince Charming will do something to spoil her today because she deserves it.

She's got a great family that loves her as she opens her arms to her own children, Mike's kids and Tyler.  The house is often food and there is lots of love and food to go around.

This year has been very hard and Carol adopted a new little friend to give her love when she needs that unconditional love.

Happy Birthday Sister One....Carol, we love you!

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News from Tina's world....

Janie, or Jane, as others call her stopped in and sent me this report:

"Hey FYI saw Tina quick today and I thought she looked great all things considered.  I even got to have a quick chat with Carol!  And your mom was there & Anthony....I didn't talk to Tina long as she was videoing with Carol."

Janie didn't come empty handed and I'm sure that they all enjoyed her visit and her goods!  She made sure that Dad was to get some for his belated birthday treat.

Carol and Tina were able to have a short video chat on Monday.  Carol said that it was so good to see her and hear her voice.  Unfortunately, I wasn't able to join in due to an appointment.

Last week, Jenn brought a hospital bed for Tina.

Tina is now set up in the back sunroom and Janie said that it seemed comfy out there.  She can now supervise all those that hang out clothes in the backyard.  

We talked to Emma and Jenn a couple of minutes ago and they are on their way to Tina's.  Casey and a PSW were there to help Tina with a shower.  It has now become a two person care for Tina.

Judy continues to do her Tuesdays and it is so appreciated.

I just talked to mom and dad today and they said that Donna B. was just there dropping off some Royal Coachman dinners and a homemade raspberry pie. She was on her way to visit Tina and drop something off there.  

I may have missed some of the people that have helped, visited or brought food as Tina doesn't feel like chatting as much these days.  Please feel free to send me a message if you visit, help, bring food in order to help us continue to document Tina's journey.

We want to say that we STEELE appreciate all of you.  This disease is moving fast and sometimes we find it hard to breathe when we hear the progression.   When I told Carol yesterday that I was having a hard time catching a breath, she said, "But we must.  We will get through this together."

So together we stand.  Thank you for STEELE standing with us.  We may be leaning a little harder on you these days.

Yard Sales and Napanee Connections

On Saturday, Howard H hosted a garage sale and all the proceeds went to Tina to help them.  Emma, Abby and Anthony did their part by running a lemonade stand.

They are pretty cute salespeople!

I was told that the day brought in just over $1000!  Tina was able to make it to the garage sale.  Hilda said that it was so nice to have a visit with them for a bit.

Thanks Howard and Hilda and all those that helped!

They were also able to get a ramp from the Gananoque church so that Tina can be wheeled into the bedroom instead of having to do the one step up.

Nursing has been changed to a daily visit instead of just twice a week.

Tina's beautiful blanket with the heart warming story behind
it a previous post.

There is still a struggle with the PSW and Respite times but this should be (hopefully) resolved within the next two weeks.  Saint Elizabeth has now got their Director involved to try and resolve the no shows or coming later than expected.

Tina continues to struggle with a lot of anxiety and panic attacks and so her medication has been increased.  Her anxiety is due to the workers not showing up and the progression of the disease.

With nursing coming daily, her care requirements will be reported more frequently and hopefully more care will be added.  A request was put in that the PSW time be changed from 1 1/2 hours a day to 2-4 hours and that Respite be increased to 4 days a week.

Today when I talked to Tina for a quick minute she said that she had gone to Dairy Queen for ice cream.  It's so good that she can still get out for these little treats.

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In Carol's world, Dustin (her second oldest boy) came for a week or so to visit on the island.  Carol got to have both of her boys around for a bit and it was good for the soul.

Ron and I drove north to a friend's birthday party.  It turned out to be a Napanee reunion.  There were lots of connections.  

The birthday was for Kevin, an OLD friend. 

Remember the Alberta boys in a previous post?

Kevin had recently been in Napanee to visit his mom, Thelma. Kevin's sister, Nancy has blessed Tina with meals and tarts.  I now have her recipe to try. Kevin had also stopped to see Tina a couple of times. Leanne, Kevin's wife, was friends with Tina when they were in their teens and apparently had a few experiences together that we laughed about.  I couldn't get a good picture of Leanne because she was busy hosting and looking after her little grandchildren.

Gary S. was also there.  He was quick to say that we were his Sunday School teachers way back when...

Ashley was there and the connection was two fold.  I don't think I had met her before but she is married to Kevin's nephew, Tyler.  Tyler's mom, Donna B just started following this blog.  Ashley's parents were youth pastors' in Belleville when we lived in Frankford, Ont.  

And then, in came friends of Kevin and Leanne's, Gord and Kendra.  We had never met them before but found out that Gord is a brother-in-law to Carolyn, another blog follower. They just moved from Napanee to retire in Alberta.

This may be all a little confusing to people that aren't connected to Napanee but I thought it was fun to share for the many that follow the blog that live or are from Napanee.

When we left Kevin and Leanne's, we went to stay overnight at Dustin and Katie's.  Dustin is our nephew and happens to be Kevin's 2nd cousin from the other side of the family.  Mind blown?  Let's just say "It's a small world."

We were thankful for some friend/family time in the west.  There were many questions about how Tina was doing.  Tina's journey continues to grow as people follow her story through these posts.

We have not been having our morning Sister Three chats and they are missed.  Mom and Dad told me that they continue to be amazed at how many people have poured out time, money, food and gifts to Tina.  

So we continue to STEELE Stand...sometimes we are lonely, sometimes we don't feel like talking but we are STEELE here.  We STEELE appreciate your thoughts, comments and especially your prayers.

Oh ...and one more thing, Howard (the garage sale host) was originally from Napanee!!!

She's a Motorin'

August started off with Tina not feeling well and ended up in Hospital requiring IV fluids twice.  Both times in Napanee on Wednesday and Thursday.  The nurse was not happy that she was not admitted and we ended up in KGH on Saturday.  After 3 1/2 hr wait in emergency she got a bed and meds.  She would be admitted and test showed she had a virus.  More meds and IV and released the following Friday doing wonderfully better.  On Wednesday last week she got her replacement lift chair and her lift.

Today she had her power wheelchair delivered.  After a test ride I had to do some adjustments to make it more comfortable for her to use and that took about 2 hours to disassemble and reassemble and no spare parts.

Homecare has been the norm no calls and no show Sat. Sun & Tues this week so far.

On Monday, respite was there for the day.  Tuesday, Judy came and spent her regular day with Tina. They took the chair out for a test drive.

Picture by Emma

Lynne M. stopped in for a visit.  Pastor Burt also dropped in to say hi.

Today, we got a video chat from Jenn who was spending the day with Tina.  Tina hardly would stop to say hello.  She was buzzing along in her electric chair and even doing circles in the road.  She looked pretty happy moving on her own.  Emma was running along beside and at one time sitting on Tina's lap.  Jenn finally gave up trying to video because Tina was getting too far ahead of her.  It was nice seeing Tina move on her own, giving her some independence.

We are glad that Tina finally got her wheels.  She's leaving people in the dust and doing donuts.  She had to take a driving test to handle the chair and she passed and now she is flying down the roads of Napanee.

You go, girl!  Do the donuts and the speeding.  Watch the curbs and don't do any wheelies!  You don't want to lose your license.  We loved seeing the smile and the sense of freedom in your eyes.

We are STEELE Standing and Tina is now wheeling.  Thanks for continuing to pray and visit and sending us your comments.

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Thanks for all the birthday wishes to Dad!  I'll make sure and share them all with him.

Carol has been enjoying some time with Dustin.

We've been celebrating birthdays at our house.  Sarah turned 13 on the 6th and Ron turned 59 on the 12th.  One is a teenager and one has one more year to retirement.

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Update from Jenn

She is getting better and eating more softer foods mac & cheese, cottage cheese mixed with peaches for supper last night with vanilla pudding and brownie for dessert.

Legs are weak so limited standing.  Sitting up she is good for 1/2 hour then needs to lay down.

Vitals are much better took her bypap to her yesterday so she has that.

She has her tablet and good group of support but she's at the point she likes someone with her as comfort and assistance."

Carol sent us a little bit of serenity

Jenn sent this information about yesterday:

She had a decent day, we had a meeting with Melissa, Care Coordinator and she is going to reiterate to the agencies the importance of her being a priority, and any calls about no-show have to be called! Judy is going today.  She was tired out after the meeting with Melissa.  She did sit up in the wheelchair for about 25 minutes.  I'm not sure why.  The Charge Nurse had it down she had more mobility than what she does because he was confused when something was said about her being fed.

They are putting a request in for Physio to come work with her in the hospital which is good because she hasn't done anything in essentially a week.

From Carol's World

And what we would all like to be doing....wouldn't it be good to put life on pause and just go cruising!

Tina is STEELE improving from whatever took her down so low.  She STEELE needs lots of care and prayer.  We are incredibly thankful that she is at KGH getting the medical attention that she needs.

From Janice C

 Thank you for STEELE Standing with all of us!

Update from the hospital

I will keep this in real time as it seems easier to keep it straight in my head.

Sunday

11:52 a.m. - Jenn was working and popped in to check on Tina.  She sent this: “Aunt Tina has more colour.  She drank a good amount of water.  They are holding off on IV for now but have it ready if needed.  She is going to email Dr. Melanson to let him know she is here. And we got a call bell she can use!”

1:20 p.m. - “she has ate some ice cream and had a bite of a club sandwich.  This is her second glass of water.” - from Jenn

Carol told Jenn to tell Tina that her garden is looking great as she tries to work away anxiety.  I added, that my garden looks horrible and causes me anxiety.  

At 7:48 p.m., Carol asked, “How’s the bp?”  I thought for a while wondering what this short form was and then asked, “Does this stand for Baby Princess or Bad patient?”  When she responded with “blood pressure” I realized how badly my brain is currently working.

Jenn responded that Tina’s blood pressure is perfect!

Jenn’s final update of the evening was at 8:33 p.m., “fluid intake up, still gets nauseous and tired out after being up. Was able to have a conversation and was smiling today and giving orders.  She drank two glasses of water.”

9:31 p.m. -  Tina not good. She made several trips to the washroom with help and a wheelchair. At supper she ate all of her mac & cheese first good eat since Mon last.

Monday

9:57 a.m. - Jenn was working again and popped in .  Tina was being taken for a shower.

I received a message from Casey, a friend of Tina’s to see how she could help.  She was willing to go and sit at the hospital with Tina but unfortunately is not allowed.  We have been overwhelmed with the number of people who have reached out to help, pray and just offer words of encouragement and comfort.

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We are thankful that Tina STEELE has a voice and can STEELE give orders.  We are also happy that she is STEELE our “Baby Princess” and hopefully she isn’t a “bad patient.”  We will give an update later on her bp!!!

News, Thoughts and Memories to Make

On Wednesday, Mom was with Tina.  Mom needed to go to an appointment and wouldn't leave Tina so they packed her up and brought her along.  Emma sent us this picture of Carol, Tina and I.  I am the middle one and definitely the tallest.  Speaking of tall, Pastor Herb came for his regular visit.

On Thursday, Jenn came and spent the day with Tina.  They sat outside most of the morning while Emma did her lemonade stand in the morning.  Angela, the nurse came for her regular check in and everything was good.  Emma liked Angela's hair style and so she did it for Emma.

On Friday, Mom was back on duty.  Tina said that she isn’t comfortable with having mom take her outside anymore. Emma has been taking days off and travelling around with Grandpa.  She has gone on a ferry ride, went swimming, lots of walking and even got locked up at the prison tour.  

Tina got a call and it was interesting listening in and very frustrating.  This person wanted to send Tina some videos to view on Teams.  It was for a something new that should be used. Tina tried to explain that she can't access it due to her lack of mobility and a lot of the people that she has with her are not very computer savvy.  I don't think a lot of people really understand the limitations and frustrations for people with ALS.  

On Saturday, Nancy D. came for the day.  They did what they like to do and went shopping.  Emma even did some shopping.

Meanwhile in the west...Carol is planning one more trip to Victoria to help Xarra with any last minute packing before she heads to Edmonton to set up her new place and wait for the baby to arrive.

I talked to Corinne the other night virtually.  Corinne is a friend that I worked with when I lived in Swift Current.  Her mom passed away with ALS after a short fight with the disease in 2016.  She now runs a group for people with ALS or family members that want information or need support.

picture used with permission

We talked about ALS, her mom, Tina and a whole bunch of other things.  I won't say that there weren't tears.  The next morning I talked to another tea friend from Swift Current and Catherine and I tried to solve all the world's problems but we didn't get it quite done so we will need to reschedule.

Sarah and I will be packing today and tomorrow.  We have a hotel booked in Cochrane tomorrow night so that we can see Stephen and Kylie before they head even more west.

We are STEELE planning and we STEELE need to pack. Mom and Carol had a chat yesterday and we are STEELE looking forward to making memories at the cottage and sharing some laughs.  Tina is STEELE planning on getting into the lake with Ron's help.  Oh yes, Ron, I need to add that he has been making daily stops to see Tina.  I must get his name in the blog!