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.

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.... 

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!

Number 50

This blog is number 50.  We started recording Tina's journey on February 1st, just one week after she had been diagnosed.  I didn't realize at the time that this blog would keep me so busy.  ALS is a disease that keeps progressing and there are many updates.  I also didn't realize how many blog followers there would be and I especially did not know how many people that would be generously giving their time and gifts to Tina to help at a time like this.

Emma has been a great help to Tina since summer break started.  She has tried to keep me informed of what is going on and sends me pictures.  She has been asking since yesterday when I would do the next post and so I thought before I go to bed I better get working on it so that I can publish it in the morning before we chat.  I don't want to mess with Emma or her crazy aunt.

The shirt says:
“Back off! I have a crazy aunt
She has anger issues and a dislike for stupid people
And I am not afraid to use her.” - purchased by the crazy aunt in the picture 

The physiotherapist told Tina that evenings should be added to her homecare time.  She needs to do evening exercises, breath stacking and needs assistance to get ready for bed.  Tina said that the time allotment that she is already allowed is not getting filled.  This past week, only 5 out of 9 PSW times were filled. 

I neglected to mention that when Ray came to visit last week, he didn't come empty handed.  If you know Ray, you know that he is a very generous person.  He brought along a gift card and this wasn't the first one that he has delivered.

Roxane and Philip (cousins) gave some money to Tina to help with gas, meals or whatever is needed.  Another generous and kind gift.

Janie was with Tina one day when they went shopping at Giant Tiger.  Tina had seen a dress that she liked but they didn't have her size and so Janie kept her eye open and found the dress at a different store and bought it.  Tina is wearing the dress in the above picture. She also gave Tina a baby monitor for us to use at the cottage.  

Percy and Ron brought Ron's mom's mattress to Tina's.  Tina said that the bed is so comfortable.  Ron has been stopping in every day to check on Tina and to make sure that his name gets in the blog.  We may need to get a picture to prove it....Emma, that's your job.

There is an interesting story that happened in the Maritimes.  Truman and Lynne were in their home town area visiting.  They went to a market and a lady was selling quilts.  Lynne was telling this woman about her friend Tina with ALS.  The lady went and pulled out a quilt and asked them to give it to Tina.  Scott and Kim were down visiting with Truman and Lynne and delivered this special gift to Tina.

 Blessings are coming from all over the country, from people we don't even know.  We are guessing that this woman has probably been affected in some way by ALS.

On Monday, respite came for the day and Emma spent part of her day with Tina, some with Nana and Papa and some time with Grandpa.

That night Bert and Dawn brought supper and stayed to eat it with the Tina.  They enjoyed ham, scalloped potatoes and a salad and good company.

Emma sent this picture to show where Hope, the cat, likes to sit.

I'd say that there is a lot of Hope on Tina!

Judy came early yesterday  because her homecare was coming later.  Judy was busy putting laundry away while we chatted.

******

One week from yesterday , Carol will be flying into Calgary and we will spend a night in Calgary before flying to Ottawa.  We are almost there. Carol already got her hair done and my appointment is on Thursday.  We need to STEELE look good even for our cottage time.

*****

Other family news...Stephen got sworn in on Monday (virtually) and is now employed by the RCMP.  This has been a long time coming and we are excited for him and Kylie as they start a new adventure.

Taylor, Carol's granddaughter is rocking her new scrubs and we are so excited for her as she follows her own dreams and in her mama's footsteps.  I am thinking this family needs all the psych nurses that we can get.

So number 50 it is ... and all we can say is thank you for STEELE reading, STEELE praying and STEELE being there for all of us.  We are STEELE Standing!

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.

65 Years!

Quick Facts From 1957:

World Changing Event: The Soviet Union launched Sputnik, the first space satellite, starting the Space Race. The Top Song was All Shook Up by Elvis Presley Influential Songs include: The Banana Boat Song (Day-o) by Harry Belafonte and Wake Up Little Suzie by The Everly Brothers The Movies to Watch include An Affair to Remember, Jailhouse Rock, Gunfight at the O.K. Corral, 12 Angry Men, A Face in the Crowd, The Incredible Shrinking Man, Pal Joey, The Spirit of St. Louis, Old Yeller, and The Bridge on the River Kwai The Most Famous Person in America was probably Rock Hudson Notable books include: Atlas Shrugged by Ayn Rand and The Cat in the Hat by Dr. Seuss Price of 45 RPM single record in 1957: 79 cents Burger King Whopper: 37 cents US Life Expectancy: Males: 66.4 years, Females: 72.7 years Wham-O Company produced the 1st Frisbee, called the “Pluto Platter” until 1958. The Three-Point Seatbelt was invented by Volvo’s Nils Bohlin. Volvo let other car companies use the patent at no charge. The Funny TV Lady: Lucille Ball The Funny Late Show Host: Steve Allen The Baseball Hit(s): Richie Ashburn hit Alice Roth with a foul ball, breaking her nose, then hit her again her while she was on the stretcher.

from:  Quick Facts From 1957

Some of these things are interesting, some are kind of funny, some are a big "who cares" and some are even quite shocking....a whopper for 37 cents!  Really, none of them are as noteworthy as what happened in our family 65 years ago.

Mom and Dad with Aunt Juanita and Uncle Johnny
June 29, 1957

Before I get to the celebration of today, I need to catch up on a few days in Tina's journey.  It had been a few days since we had video chatted and boy, did she have a lot to say.

Let's step back in time to last week.

Friday - Janie (or Jane) came all the way from Tweed to spend the day with Tina.  She said that they had a great time.  Dad was a little disappointed when she showed up without tarts.  Of course, she didn't come empty handed.  Ron guessed right when he said that she would bring something with strawberries.  (Facebook gives hints!)  She brought  pineapple pistachio fluff, dill pickle salads, chicken pot pies (that Tina said were sooo good!) AND strawberry/rhubarb pie.

Janie also gave Tina a great idea.  We could take a baby monitor to the cottage so that if we need to put the baby sister to bed, Carol and I can party by the fire with the mosquitos.  

Saturday - Nancy D arrived for the day.  Tina said that they "had a blast."  They went to Giant Tiger to shop and she got her wardrobe for the cottage.  She bought a dress, a top, and 8 tank tops (every colour that they had!).  They found a bathing suit that she really liked.  The top was the right side but there wasn't the right size in the bottoms so they reluctantly had to leave the top behind.  (Remember this part for later in the blog.)

Sunday - Tina arrived a little late for church.  Tina was supposed to give her testimony but because of their tardiness they postponed it until next Sunday.  I will be checking in virtually to hear this.  I think you should be able to get to it through this link Wilton Church

Tina got to go for a drive and google maps didn't even know where they were.  Tina said, "I guess we know when we get to the end of the road."  Kind of like life.  We never know what is just around the corner for us but somehow we keep going and find our way back to where we should be.

Monday - Tina continues to have her homecare each morning and on Monday day and Thursday evening she has respite.  Kate, the respite worker is a keeper.  She did a manicure and pedicure for Tina.  I asked if we would have to do this at the cottage and she said, 'No, Kate will do it!"

The nurse came and told Tina that she was "the perfect patient."  The nurse will be coming to the cottage when we are there.  It will be nice to mean all the team of workers that have been there for her.

The Occupational Therapist came and Tina had her driving test.  WHAT!  She had to start on the ramp and drive a power wheelchair down.  She was then instructed to turn right, left, do a complete circle, stop, etc.  If she passed, then she would be qualified to have a power wheelchair.  10 out of 10!  She is already thinking about the possibilities.

Cathy R came from Belleville and brought butter tarts!  I've seen pictures of these and my mouth waters.  So what Janie didn't bring from Tweed, got delivered from Belleville!  Butter tart blessings!

Tina got a call from Nancy D.  She was in Kingston and found the bathing suit that Tina wanted and they had her size.  She wanted to know if Tina wanted it...and it was a big yes.  I'm glad that I'm gong shopping tomorrow because it sounds like Tina got all new duds for the cottage and I better not show up in my old rags.

Tuesday - Judy was back on duty.  She was there for the speech therapist appointment.  Tina has no problem speaking and we are hoping that she keeps her voice.  It's actually funny to even say that.  Do you know how any times growing up I wished that I could silenced her but now, it's different.  Keep talking!

Adam, the speech therapist also was giving instructions on how to swallow.  Tina has had a couple times of choking.  This is where my typing pauses and I take a breath.  This is Tina's journey and she wants the facts to be out there.  Choking is a very normal thing with ALS.  Adam and Tina discussed different things about choking.  They watched a video and he left instructions for others that are feeding Tina.  The food needs to be soft, juicy and easy to swallow.  He left 5 commandments and said that there will be more to follow.

Judy and Tina went for a drive and had lunch at Pita Pit.  

Geneva P., a wonderful lady from our home church, showed up with a lemon loaf.  She said that she had Tina's name on the fridge for awhile and wanted to bring something over to her.  There have been so many people showing love and concern to Tina through this time.

Wednesday - I'm almost caught up.  Jenn came to spend the day and brought Emma.  Emma will be spending the week with Tina.  Jenn was doing double duty.  Her grandma (Ron's mom) fell yesterday and broke her hip.  Jenn went to the hospital and visited with her and was working to keep the family all informed and using her connections in the Kingston Hospital to see when she would be transported there for surgery.

Tina, Austin, Jenn, Emma, Mom and Dad went to Tamworth to enjoy an anniversary lunch.  We hope to all celebrate at the cottage in a few weeks.

I apologize for the length of this blog.  Tina's life is way too busy to do a weekly blog and so I will try harder to do more entries so that you can read shorter updates more often.  I have to say that Carol and I are so encouraged by Tina's upbeat attitude.  She lifts us up when we get down.  

Thank you to all who have helped in any way this past week.  We appreciate those who spend time with Tina, brought food and snacks, picked up bathing suits in Kingston, etc.  We are encouraged by your comments, thoughts and prayers.

Your marriage has lasted almost as long as the average male in 1957.  Thanks for STEELE sticking together. Happy Anniversary Mom and Dad!  

We are STEELE Standing and before too long we will be flying.

Back to Day Zero

 Well, it's back to day zero again....if we are counting how many days without incidences for Tina.  

On Saturday, Tina made her way to the washroom.  She is "usually" able to get there on her own.  On that day, something went wrong.  She fell and banged up her face pretty bad.  The result was a huge goose egg and two black eyes.  😥

Tina is pretty amazing though.  She doesn't lose her sense of humour.  She told us on Monday that she was never really good with eye shadow so this was a way of testing out a new colour.  The Respite worker was there when she told us and laughed and said "I love your sense of humour."  

We would like to have Tina sign an agreement when we go to the cottage that she will not have any falls or injuries while we are there.  Ron said that we just need to bubble wrap her.  Perhaps we could get one of these for the lake:

So, let's step back a few days to catch up on what else has been going on besides bumps and bruises.  On Saturday (before the fall), Tammy (a cousin) came to spend the day.  They had a great time.  They picked up pizza and headed back to Frizzell road to see Gary (Tammy's brother) and Denise.  They had a really nice day.  Thanks Tammy for sharing some of your time with Tina.

On Monday, Tina was back to her regular homecare.  Yes!  The majority of people that have come to help Tina have been more than amazing.  They show that they care and really want to help the people that they work with.  Tina's regular homecare worker, Janelle is Tina's angel.  She is caring and puts in the extra effort to braid her hair and make sure that she is comfortable before she leaves.  She has asked her not to be sick or take holidays! The Respite that came on Monday was new and was really good.  She worked around Tina and cleaned the house and took care of Tina's needs.  Tina is hoping that she will be back.  The nurse came to check Tina out and said that she will need to watch the lines under her eyes.  There is bleeding under the skin.

Today Judy was back for her regular Tuesday time with Tina.  The weather wasn't good enough for the convertible but Judy had been doing some research on some stretches that they might try.

Carol and I made the video chat from my house.  Yes, Carol and Augie came for a visit and what a blessing to have her her for a week.

We have done a little touring around my neighbourhood, enjoyed some meals and lots of coffee and tea and I put her to work on my gardens.  They look amazing!  We are having our Sister Two time and are looking forward to the Sister Three Cottage week.  Carol and I are hoping to order our STEELE Standing shirts today from HartnHart.  We noticed that Tina had her STEELE Standing shirt on when she fell.  

Tina has to go for her breathing test later this week.  Tina also joked about that.  Jenn will be going in with her and she just had her wisdom teeth out.  They will look like they have been in a brawl.  Tina has two black eyes and bruising and Jenn has swelling and could possibly have black eyes too.  They will be asking who won?

So to continue with more information in regards to ALS Awareness Month...

How ALS works in the body

Our brain is connected to our muscles through millions of specialized nerve cells, called motor neurons, which serve as our bodies’ internal wiring and enable us to move our bodies as we choose. Motor neurons work in pairs: an upper motor neuron in the brain extends to the brainstem at the back of the neck or the spinal cord, and a lower motor neuron extends from the brainstem or spinal cord to the muscle. The brain sends a signal along these motor neurons telling a muscle to contract.  This signal is an electrical impulse created by chemicals in our neurons.

In ALS, motor neurons gradually break down and die. This means that the brain can no longer communicate with the muscles of the body. As a result, the muscles become weak and eventually someone living with ALS will be unable to move them.

Taken from:  ALS Society of Canada

Once again, we can't thank you all enough for being there for Tina.  She continues and will continue to need care and people to come and visit.  We appreciate your support in whatever way you can help.  Thank you for sending her messages and for continuing to pray.  

Tina may have had another fall but she is STEELE Standing and we are too.

Jenn has updated the new meal train if you are interested in helping in this way.  You can click this link to pick a date:  Meal Train for Tina

ALS Awareness Month

What’s the response when you tell someone that your sister has ALS?

Most of the time it is, “I know someone that had/has that.”

Once in awhile, someone will say “what is that?”  That is one of the reasons that Tina wanted this blog.  She wanted people to walk beside her on her journey and see what ALS takes from you.  ALS, also gives in Tina’s case, so many wonderful support people who have helped and continued to help in so many ways.

This month I am going to copy some facts from ALS Canada so that we all can better understand this disease and how research and trials need to be done.  The facts are hard and cruel and much of it we would like to ignore but unfortunately it is happening to our sister.

About ALS

Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.

ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.

Copied from https://als.ca/what-is-als/about-als/

…..

Tina and mom were sitting outside this morning enjoying the sunshine in Ontario.  Tina has some concerns about our cottage time.  Will we be able to handle everything that needs to be done?  We are STEELE Standing, aren’t we?  We can do this and we will have fun trying.  Life isn’t always easy but as we support each other we can make good memories along the way.

Thank you for STEELE Standing with us!❤️

Tina’s Schedule

Tina is feeling better and enjoying the warm, sunny days.  She loves to be outside no matter what the weather.  Just throw a blanket on her if it is cold or a fan if it is too warm. She tires easy but most days she likes to go if someone is willing to take her for a walk or a drive.

Tina’s Schedule:

Each morning Tina is helped out of bed.  She is helped with her personal needs and then gets settled in the chair with the remote.

Around 8:30 a.m., the homecare worker arrives.  She gets Tina showered and dressed. They usually braid her hair or pull it back.  They give her something to eat for breakfast and place the phone and tablet within reach.

Around 10:15 a.m., we have our Sister Three video chat.  We are usually talking until someone comes to be with Tina.

On Mondays, the nurse arrives and does her vitals.  Tina's workers know that they just need to walk in as she is not able to greet them at the door.

Respite comes after the nurse and is there for 5 hours.

This morning, when we were started our chat, Tina was already outside.  Mom and dad were with her.  Her homecare worker was sick and couldn't make it.  Tina was waiting in her chair for her worker and she didn't arrive.  She had apparently sent a message but Tina can't get access to the messages by herself.  What she can do is say, "Hey google, call mom."  Mom and dad arrived and mom helped Tina get dressed, took her to the bathroom and got her something to eat.  

While we were chatting, Judy arrived.  She thought she was late because mom and dad were with Tina but she definitely wasn't.  

Schedules are super important for all of us but especially for someone who can't look after themselves anymore.  Sickness happens and it makes sense that someone can't make it to work (like a homecare worker) but shouldn't there be a replacement for times like these....just my thoughts.

Tina sent us this picture and we think it is because her hair is so curly after being in braids or that we get excited to see her upright but either way I thought I would share it because we know that you like to see her too.

The rest of the week there are many soldiers in her army coming to help.  There should be the regular homecare in the morning and a nurse on Thursday.  

Tomorrow, Jenn will come for the day.  On Thursday, Thelma (a friend of Jenn's and mine) is planning on spending the day.  Mom will be with Tina on Friday.  The last time Mom was there for the day, Anthony also came.  It was a good team.  Anthony helped when Tina needed to move and mom did the waiting on Tina. I think they plan on teaming up again. On Saturday, Tammy (another cousin) is coming for the day.  Thank you to all who share their time with Tina.  It is really appreciated.

Next week Tina is scheduled to go to Kingston for her breathing test.

There haven't been any results yet from her MRI.

I think that catches us up for a day or two.  Once again, thank you for your prayers, visits, and those that come to spend time with Tina.

We are STEELE Standing because of your prayers and help.

Not Up To Talking Today

On Monday, we had a short chat.  Tina had already had the homecare worker there and we talked for a few minutes and then the nurse arrived.  Respite was scheduled for the rest of the day.

Tina sent us a message on Tuesday, "not up to talking today."  That's always hard to hear.  We know that this means that she is having a hard day.  Judy arrived for the day.  Tina warned her that she was having a low day.  Anthony was around most of the day too.  Judy said that "it was a sleepy day."

I wasn't really feeling that well that day either and then tested positive for Covid that night.

On Wednesday, we didn't talk because Tina was too busy.  She went with Mom and Dad to Tamworth.  Mom had a doctor's appointment.  They then drove to the cottage and had a look around.  Mom and Dad think that we will be enjoying that location for our Sister Three Cottage time.  They went to the Soap Shack but Denise wasn't around.

This morning we got to chat.  Tina was looking good.

Carol was at Xara's.  She will be there for a few days to look after the animals while Xara and Alex have a weekend away before the baby arrives in the fall.

I was laying on the couch feeling pretty rough but it was good to talk to the girls.  Missed days are missed memories.

The rest of the day for Tina was full.  Jenn, Abby and Emma arrived shortly after our call.  Mom and Dad were bringing lunch. Rita came for a visit.  Rita is an old family friend.  She has had her own health issues and was looking good.  She brought gift cards for Wendy's and McDonald's.

We have been blessed in our lives with having a huge family and so many great friends.  They have all been showing up to help Tina.  We want to thank you all for reaching out and helping in so many ways.  

Some blog stats:

• We have 18 followers, including one new...welcome Rick.
• We have regular followers from Canada, United States and Ireland
• We usually have between 125 to 150 people that read the blog after each post
• We are STEELE Standing
• We are better together!

Convertible Time and Back to Zero

On Thursday morning, I received a phone call from Tina.  It was our usual time for a video chat but this was just an audio call.  She used google to ask "her" to call.  Her regular homecare worker wasn't able to make it and so no one had shown up as of yet.  So there she sat with her phone and tablet out of reach.  Austin was still in bed.  The phone had rang twice.  It might have been from another homecare worker but who knows?  We talked until about 10:45 and I could hear the cheerful "hello" from Judy.  I told her that she was a life saver and Tina said, "Oh good.  Now, I can at least get to the washroom."

We all know that things happen and people can't make it to where they are scheduled to be but when it comes to someone that depends on them to get out of a chair, it is frustrating.  Thankfully Google will make calls for Tina if she really needs help.

Tina and Judy's schedule was changed.  They waited for the homecare worker to come and help get Tina ready for the day.  It was also the day for the nurse.  They then took advantage of the beautiful day and went for a drive in Judy's cool convertible.  They made a quick stop at Mom and Dad's to show off their wheels.

They went for a drive and Judy asked Tina if she would like to go to a restaurant. Tina said, "if you don't mind feeding me?"  They went to a restaurant called "Itty Bitty Restaurant."  They shared a clubhouse and some home fries.  There was a gentleman that showed quite a bit of interest in Judy's car.  Tina teased her and said, "that man is flirting with you".  Judy responded, "He's flirting with the car."  Thanks Judy for giving Tina a great day and showing up at just the right time.

On Friday, Mom was back on duty.  She still wasn't feeling well and so spent the day just being there for Tina.  We chatted for a bit in the morning.  When our dad worked at Dupont, they would have a sign at the front of the plant saying how many days they had gone without an incident/accident.  Tina said that she was back down to zero this morning.  She fell when she was with her homecare worker.  She was proud of herself that she was able to roll on her side instead of falling face forward.  She didn't hurt herself but it sure is hard to hear that this is happening. Austin was there to help her up.

This morning, Tina used google to call mom.  Her control for the chair had fallen on the floor.  She was stuck in the chair.  She managed to somehow use her foot to do what was needed.  Nancy D spent the afternoon with.  

Today, Ron and I celebrated our 39th Anniversary.  We went out for breakfast, had a steak barbeque for lunch and stained the fence in between meals.  We are STEELE together and STEELE having fun even if it is staining a fence.

While I was working on this post, Carol was texting me.  She has her ticket booked to come to Calgary before our trip to Ontario for cottage time.  Our plans are coming together for our Sister Three Cottage Time.  Cottage booked, flights scheduled and car rental reserved.

The Three Sisters 39 years ago today!

We will get an updated picture at the cottage.

We are STEELE Standing except when Tina falls and then someone is there to pick her up and we stand again.  Thanks for standing with us.  We need you!  We need each other.