April 28th - Sunday & April 29th - Monday

 



Sunday:

No day shifter today since its the weekend.  It was somewhat quiet in terms of visitors.  The weather was overcast; and rainy off and on during the day.  Several people called or texted wanting to stop by to visit, but Joe was napping quite a bit, and it just wasn't a good day.  He asked not to be awakened from napping to visit.

Our friend, Sandy (from hair salon we patronize), came by to visit Joe.  She brought homemade pumpkin pie since she knows Joe has a sweet tooth.  He hadn't been feeling well earlier in the day, so unfortunately, he just wasn't up to visiting at that time.  Dennis, (Joe's cousin's fiancé) brought another jello creation that Joe loves....with cool whip and fruit.  He did not want to wake Joe, so he said he'd come back to visit another time.  Our friends, Don (Elder Class of '76) and his wife, Janet, brought by a dinner for us.  I thought by late afternoon that Joe would be up for visitors, but he was still not feeling well enough to want to mingle. 

During the evening, Joe was uncharacteristically quiet and he didn't eat much.  He just wasn't hungry.  He is now taking his meds at regular intervals to keep on an even keel.  Those meds do relax you so you can fall asleep.  Plus, with the weather on Sunday, it led to a pretty lazy day.

Why is it that I still did not get everything done that I wanted to?

Monday:

Nights continue to be pretty quiet.  Joe is taking a larger dose of meds before bed and when he does, he sleeps through the night.  That scab on his nose from the previous bi-pap breathing device is finally almost ready to come off.  Yay!  I was kidding Joe and told him he looks like the "mole" from the Austin Powers movie.

Today's day shifter was Judy (Joe's childhood classmate), who works at our pediatricians' office.  Amber (hospice aid) came to bathe and shave Joe right after breakfast.  She is training another aid, Christine, who came along with her.  So, Joe had two young ladies bathing him.  Uh, he looked like he was really enjoying himself! 

The late morning and early afternoon were very quiet....no visitors.  Then, later in the day, Steve M. and Matt R. (both Elder Class of '79) stopped by to see Joe.  Our friend, Sandy M. ( and my UC bearkitten teammate) came over again to drop off some paperwork for me that she had notarized.  She brought dinner from Chipotle and City BBQ.  I had complained over the weekend about feeling overwhelmed in keeping up with all the paperwork (unpaid bills, going through mail, coupons, etc.), so Sandy brought a store coupon organizer wallet, and a couple of in/out baskets for me to get started on my reorganizing.  Thank you so much!

I'm still going through all the cards and letters that many of you have sent via snail mail.  Those cards and letters, along with bills, are right now sitting in a big stack waiting for me to have the time to go through them.  I promise, I will!  We appreciate everyone's concern and daily prayers.  We love you all!

April 26th - Friday & April 27th - Saturday



Friday:

We are now giving Joe his meds at more regular intervals to prevent anxiety and ward off "air hunger".  He is eating 3 times a day, but the quantity is very small.  He keeps telling me he's trying but always feels full.  He is enjoying all of the visitors but he does tire more easily than before. 

Our day shifter for today was Tom F. (Elder Class of '79).  Our friend, Cathy M. (from church), offered to take Becca to 2 different appointments today....one in the morning, and one in the afternoon.  After the one in the morning, she took Becca to breakfast and then brought me home a really nice salad to have for lunch.  Thank you so much!  Amber (hospice aid) came early morning to bathe and shave Joe.  Afterward, he took a really good and long power nap!

Joe's sister, Jane, and her husband, Jeff, came over to help with cutting the grass.  Jane picked up sticks that our ginormous trees in the lower backyard drop fairly often, and Jeff mowed.  We had the yard sprayed for weeds, etc. on Monday, and that forced us to wait at least 3 days to mow, and there was a day of rain in there, too.  Unfortunately, the grass needed to be cut last Monday....and having to wait all week made it twice the job by today.  We have a mulching riding mower, so 2 separate passes of the yard where necessary and a lot of scraping on the underside to clean it off.  When Jeff finished, he took Dan to work for us.  Thank you to the Schoenfelds for all that you do for us!!

Two friends from HS came by late afternoon to see Joe, Dave T. and Tom N. (both Elder Class of '79).  Tom brought Joe a book entitled "Proof of Heaven:  A Neurosurgeon's Journey into the Afterlife".  It sounds very interesting and can't wait to read it to Joe.

In the early evening, Beth (Joe's cousin), and her husband, Bill, stopped by to visit and pray with Joe.  Our friend, Ed (from church) picked up Dan at the end of his work shift and brought him home.  Thank you!

Saturday:

Nights have been pretty quiet as of late.  Joe seems to be sleeping through the entire night, only to awaken if thirsty or "taking care of business".  The newer bi-pap mask is so much better, more comfortable, etc. than the original one.  The nose is now healing quite nicely.

No day shifter officially today other than me.  However; my friend Sandy (back from our UC bearkitten days) called to say that she had freed up her whole day and that she was coming in from Milford to do whatever I needed.  Wow!  What an offer!  She helped do range of motion exercises with Joe, massage services and offering comfort.  When Joe was napping, she helped me clean the house.  She dusted, cleaned stovetops, scrubbed bathroom sinks and toilets, while I swiffered the floors and mopped, cleaned the inside of toilets, countertops, did laundry, etc.  We made quite the cleaning team and got a lot accomplished.  She also is helping me with some overdue paperwork that I had piling up.  Thanks Sandy!

Today was a fairly busy visiting day.  Steve C. (Elder Class of '78) came by to see Joe early afternoon and brought 2 gallons of milk for me.  Thank you!  My sister, Jenny, stopped by with bagels and blackberries later in the afternoon and to visit with Joe.  Our friend, Joe B. (from church) brought Dan home from his 1st full day shift on a Saturday.  I had taken him into work (8am), Joe B. brought him home after 3pm.  Then, we gave him our pic so he could bring communion back for us and visit with Joe.  Thank you!

Our friends, Dave B. (Elder Class of '79), his wife, Kathy, and their daughter, Lexi, drove down from Mason to bring dinner (Frisch's) and eat with us.  Plus, visit with Joe.  Our friend, Kathy H. also came by bringing a few things from the grocery (yogurt and cotton balls).  Then, to round out the party, our friend, Karen K. (who is also Kathy H's sister) stopped by bringing a whole bunch of McDonald's sundaes (both hot fudge and caramel) to top off our dinner.  She also gave us a gift card.  Yum!  Thanks to all! After eating, everyone hung around awhile to visit with Joe.  We all had a great time, but by the end of the visit, Joe was ready to go to sleep.  I have to admit, so was I.  We all went to bed fairly early.

 

Continued thanks for all that everyone is doing for our family.  We are eternally grateful!

April 24th - Wednesday & April 25th - Thursday

 

 

FYI....the ALS association is actually monitoring our blog, and they saw my request for a baby monitor.  It arrived today in the mail.  So, for those of you that have since messaged me about letting me borrow one.....we're now good.  Thanks so much for everyone's help!

 

Wednesday:

 

Joe is continuing to ask for more anxiety and air hunger meds more often....each day.  He is also still eating less because he doesn't feel very hungry.  Joe continues to take multiple naps per day and they seem to be getting longer.  He is still alert when he is awake and enjoys all of the visitors. 

 

Our day shifter for today was Beth (Joe's cousin) and her daughter, Molly.  While Amber (hospice aid) came by to bathe and shave Joe, Beth and Molly helped me with chores around the house (making beds, swiffering floors, collecting the recycling, etc.).  Donna (massage therapist), stopped by late morning to give Joe a complete workout to soft music.  He was so relaxed that he fell asleep in the middle of the appointment.

 

Mid-day, Joe's boss (Bob) came by after driving in from Indianapolis (he flew in from California), and brought lunch for everyone from Bob Evans.  He spent several hours here, and helped collect all the work equipment and cell phone, laptop, and materials that need to go back.  Bob also took care of taking the boxes, paper stuffing, etc. to the recycling center up at Kuliga Park, so I didn't have to clean anything up.  That was a lot of work and I appreciate him taking care of it.  I had to apologize to Bob after he left because I forgot to get a picture of him with Joe. 

 

Beth volunteered to take Becca to Beacon Ortho to have her foot x-rayed.  She stepped down on it wrong as she was taking our vacuum cleaner down the steps.  Becca thought it might be broken and it was!  Now, she is in a cast and on crutches.  Beth also brought her home after they stopped at the grocery to pick up a few boxes of oatmeal packets. 

 

Our friend, Pat, who normally picks up Dan from school was not available.  So, I have to thank Julie B. for arranging a ride for Dan.  He came home with another student who was driving her son home.  Thanks Julie!  Jeff D. (Elder Class of '80...that I thought was Class of '79) stopped by late afternoon to visit Joe.  He also brought a dinner for us.  Thank you!

 

That night, actually early the next morning (~4am), the alarm on the oxygen concentrator went off.  I called after hours support and they talked me through a few things to check.  All I could figure out was there was a loose connection or we had a kink in the tubing that set it off.  It took several minutes once the alarm went off for the machine to adjust back to 5 liters of oxygen.  It was difficult to get back to sleep after that adventure.

Thursday:

Joe had asked for an increased dosage of his anxiety meds when he went to bed last night.  And, he slept the entire night without waking, very rested.  Yay!  However; he is still eating quite a bit less than before.  We have to keep reminding him to drink water to stay hydrated and to keep the output clear.

Our day shifter today was our friend, Pat.  She was busy taking Becca to work, picking her up, and then taking her for a last minute haircut.....all while taking care of Joe (and me providing backup during lunch, and breaks, etc.).

 

A friend from work, Gail, drove out here to the west side from downtown to visit with Joe. 

She had actually never met him before.  However; he did sing to her over the phone on her birthday.  She and I were supposed to have lunch at the office that day, and I had neglected to tell her about Joe's circumstances.  So instead, she brought lunch for all of us.  Wilma (hospice aid) came out in the early afternoon to bathe Joe.  Later in the afternoon, T-Bird (Joe's cousin), Beth (Joe's cousin. although unrelated to T-Bird) and Aunt Mary Jane, all came by to visit with Joe.

 

Joe's sister, Jane, and Pat teamed up to help fold all the laundry that had been done throughout the day.  When the aids come to bathe and shave Joe, they also change the bedding.  So, there is always some laundry to wash and fold.  Jane's husband, Jeff, was going to cut our grass but since it had rained the previous day it was too wet.  So instead, he edged the yard.  Thank you!

I know I sound like a broken record but we have so many things to be thankful for during this stressful time in our lives.  Most of which has to do with our wonderful support system....all of you!




April 22nd - Monday & April 23rd - Tuesday



Monday:

Joe is starting to sleep more during the day.  Any type of activity tends to wear him out.  His food intake is also starting to decrease.  And, he is asking for more meds to fight off the anxiety and air hunger that happens with this horrible disease.  When you have nothing but time, you tend to think and worry about everything.  With worry, comes anxiety....and sometimes that is so hard to deal with unless you have some help. 

Our day shifter for today was Jane (Joe's sister).  She took a day off work just to help us out.  We can't thank you enough for giving of your time.  Amber (hospice aid) came by in the morning to bathe and shave Joe.  He really enjoys the pampering and I do, too.  He typically sleeps during most of the event.  Our friend, Pat, picked up Dan from school.  He had to work the 5-8 shift at his part-time job, so when Jane left here for the day, she took Dan to work for me.  Thank you!

Steve M. and Joe H. (both Elder Class of '79) stopped by late afternoon to visit Joe.  They talked about contacting some other members of their HS class to make sure they come by and visit Joe.  Dave F. (Elder Class of '79) stopped by early evening to visit Joe and drop off a dinner for us.  Thank you!  Our friend, Kathy H. (Seton Class of '81), called to ask if there was anything she could pick up for us.  I gave her a few grocery items and she delivered.  She also visited with Joe for a short time.

Later in the evening, our friend Ed (from church) picked up Dan from work and brought him home.  He came in for a few minutes to see Joe.

Tuesday:

Joe had a rougher day today.  He was very anxious about eating, taking his pills, drinking water, etc. all due to the choking incident from Saturday night.  Swallowing is difficult with this disease and the thinner the drink or food, the more chance you have for choking.  So, many times, you are asked to thicken everything....including water.  And, the thickening agent is nasty tasting.  Joe knows to tuck his chin down when he eats and drinks to keep things from going down into his lungs.  So, the meds come in handy to help with these feelings of anxiety....allows you to calm down and breathe easier.

Our day shifter today was Vicki Y.  She is our hair stylist.  She volunteered her time on her off day to help with Joe.  She's known Joe since he was in high school.  She brought along her trimming equipment to help give Joe a much needed haircut.  We used the patient lifter to get him in the wheelchair out in the entrance hall (tile floor) so clean up was easy.  We vacuumed the floor and chair when she was finished.  When she left at the end of the day, Vicki took Dan to work for us.  Many thanks!

Our friend, Kay (from Taco Bell group), stopped by to bring back Becca's gym shoe.  She twisted her ankle pretty badly and Kay let her borrow a boot to wear on her foot until we can get it x-rayed.  She was going to visit with Joe, but he was indisposed at the time.  Wilma (hospice aid) came by in the early afternoon to bathe Joe and change all the linens.

Dave B. (Elder Class of '79) came by after his work day to visit with Joe.  He ended up running to the store for us to pick up a few things on our grocery list because Joe was not having a good day at the time.  Their visit was shorter than planned.  My sister, Jenny, stopped by to deliver the hand pillow that we left in the van from the church visit over the weekend.  She also brought by 3 specialty Z-Flo (fluidized positioners) pillows that conform to the shape of your body.  Her friend, Lisa, who drove the wheelchair van to church for us, had them at her house and graciously let us borrow them.  Thank you! 

At the end of the evening, Jerri (from church) picked up Dan and brought him home from work.  She came into visit Joe and encourage him to keep fighting.  She was very emotional as she was leaving when she hugged me.  Of course, that made me cry, too.  But, it was good to let some of the emotions out. 

Wow!  The people that call and text and offer their time and help is just so unbelievably generous.  The outpouring of love from everyone is just so touching.  It helps us get through these days.  Thanks so much to all of you.....for everything.

  

April 21st - Sunday

 

 

Joe slept pretty well on Saturday night, after the choking scare.  He was only up a few times for a drink of water.  The new, smaller bi-pap device is working out very well.  His nose abrasion is healing over very nicely at this point.

 

The day shifter today was me!  It was a light visiting day, but that's OK.  Joe's sister, Jane, came over mid-day and brought Dan a newspaper so he could complete a homework assignment.  Thanks for stopping to pick that up!  I had called to let her know that Joe's neurologist, Dr. Quinlan, had called the day before to arrange an at home visit for today.  I asked Jane if she wanted to be here to ask questions.  The doctor, who is actually in a wheelchair, came mid-afternoon and spent over an hour talking to and examining Joe.  He is a very nice and gentle man.  We like him a lot.  We got more questions answered, and he always has ideas for some of the hurdles we've run into now that Joe is paralyzed.  He really liked our set up in the great room for Joe's care with the bed placement, all the supplies and seating for guests.  He gave us an "A".

 

Our friend, Pat, who is now our night shifter came by early evening to begin helping with Joe's care.  Most of the day was pretty quiet.  Joe took a few naps, and I tried to catch up with bill paying, paperwork, etc.  I never did get my nap.  I find that when I do get the opportunity to get extra sleep, I tend to stay awake thinking about all the things I still have to do.  When I go to bed later, I'm so exhausted that I have no issues with falling and staying asleep.  Does that make sense?

 

Thanks to all of you who are in the dinner meal rotation.  The food that has been brought by all of you is certainly appreciated.  It makes it so much easier to get things done when I don't have to think about food prep myself.   





April 19th - Friday & April 20th - Saturday



 



Friday:
I decided, after getting a few prods from our faithful followers, to call hospice asking if a respiratory therapist could come out to the house and get another bi-pap breathing device for Joe.  Trying to come up with a bandage to help his nose heal, wasn't working.  So, Phil (from respiratory therapy) stopped out to the house during the morning with a different model that fits over the mouth only, with little probes that fit into each nostril.  So, we were able to get rid of the triangular mask that rubbed his nose bridge raw.  And, the nose bandage was removed to promote healing.  Joe sleeps much better with this device, too.  YAY!

Our friend, Pat, helped us out today as our day shifter.  Amber, the hospice aide, came out in the morning to shave and bathe Joe.  Then, Laura (friend from church) called and offered to pick up a few grocery items (shampoo and soft drinks).  Thank you!  Kay (from Taco Bell group) stopped by in the afternoon and brought a replacement supply of Reese Peanut Butter Easter eggs and offered to take Becca to work for us.  I ended up picking Dan up from school myself because I had a few errands to run that only I could do.  Boy, it was sure nice getting out of the house in this beautiful Spring weather.

Later in the afternoon, Steve C. (Elder Class of '78) stopped by to visit Joe.  At the same time, Bert and her husband, Bob (from Taco Bell group) came by and brought 4 different flavors of Graeter's ice cream without chips.  They thought maybe Joe had a chocolate restriction so they opted for the non-chip flavors.  As a cousin of Joe's always says, "it's all good!"  Teri, wife of Jim (Elder Class of '79) who had visited Joe previously, brought over a dinner.  Unfortunately, I was on a work call late afternoon and couldn't come upstairs to thank her in person.  Pat, our day shifter, did that on our behalf.  Joe was taking a power nap at the time.

Saturday:
On the weekends, I have day and night shifter duty.  It was a quiet morning and I was able to get some laundry and chores done around the house.  Our friend, Pat, who did the overnight shift, stayed around long enough to take Dan into work for me late morning.  She also picked him up and took Becca to work mid-afternoon.  Thank you!

The afternoon was all about Joe.  We had to prep for the big event later in the day.  Going to church!  I shaved Joe and washed his hair, got him completely dressed.  My sister, Jenny, and her neighbor/friend, Lisa, were able to get a Honda Odyssey mini-van that had been converted with an adult wheelchair lift.  They came over early to help me get Joe in his coat and into the patient lifter.  We moved him into the wheelchair and strapped him in.  He had a little difficulty keeping his right hand on the remote control, but he was still able to "drive".  However; throw in the need to move the portable oxygen tank on wheels along the side and it made for a challenging trip.  It was interesting getting Joe to drive up the ramp into the van.  There wasn't a whole lot of extra room and the remote is very sensitive to the touch.  Needless to say, I had to reach over his back to operate the remote to get him in without tipping over the side. 

We drove to St. Lawrence church for 4:30pm mass.  When we arrived, Joe jokingly asked me to "announce his arrival".  We sat at the front pew at the break on the end.  During communion, parishioners had to walk around past Joe.  One of his HS friends, who didn't know what had happened to Joe, was utterly shocked and stunned as he saw him in the wheelchair.  After church, Joe was a total "rock star".  He had at least 60-70 people waiting in line to talk to him.  It was awesome and Father Mark came over to visit with him, too.  Joe thoroughly enjoyed the trip but it also wore him out completely.

When we got home, we had a message on the answering machine from a friend who wanted to stop by that night and visit.  It was the first time that we had to turn folks away.  Joe was just too exhausted.  He actually only had some jello with fruit because he didn't have the energy to eat anything solid for dinner.
  
Dan and I got Joe ready for bed, and the ritual includes giving him night time pills, which he takes with water.  He got all of the pills down and after the last one....about 2-3 minutes later, he started to cough.  It is very difficult to cough up anything because the disease affects the ability to swallow so pneumonia can be a big concern.  He kept coughing and we pulled him forward to slap his back, but he was gagging and making strange faces.  Finally, he was able to expel something and it turned out to be the last pill he swallowed.  He was so anxious and upset about choking that I contacted hospice and they sent over a nurse to check him out.  His blood pressure was sky high due to the scare, so anti-anxiety meds were very important last night to calm him down.  He was able to relax enough to fall asleep.  WOW, not a great ending for an otherwise awesome day.

I do have request:  Does anyone know of or have a baby monitor that we could borrow?  We'd like to be able to hear Joe when he wakes up if we are out of the living room.  With the breathing device on and his inability to move, it is difficult for him to make enough noise to get someone's attention.  A monitor would sure help.

 

Thanks to everyone for their continuing support, prayers and words of encouragement.  It certainly helps our family get through this difficult journey. 

April 18th - Thursday

Joe didn't sleep very well last night.  That darn breathing device was still rubbing the bridge of his nose and irritating it.  Every time we get some bandage that seems to work, in a few hours the pad gets pretty soaked and it has to be changed.  I'm going to call hospice and have them re-evaluate his breathing device.  Maybe something isn't fitting quite right.  I've had a few people who use similar devices for sleep apnea suggest a new fitting. That's next on my agenda with hospice.  Stay tuned....

Our friend, Pat, helped us out today as our day shifter.  She normally picks up Dan from school, which she did on top of taking care of Joe.  Unfortunately, starting this evening we lose our hospice night help.  Per hospice, and our insurance company, Joe is currently not suffering from any acute condition, such as breathing difficulties, anxiety or pain.  So, he is considered to be in a plateau-type state, and we basically need to cover both days and nights until Joe suffers a setback.  Finding day time help is difficult enough.  Now, we have to cover all 24 hours.  Fortunately for us, we were able to find a family friend to help us out for the overnight shift.....Pat (our transportation diva)!  She will sleep here and cover the nights while others help us with days.  Thank you so much!

 

We had several hospice folks stop by, Wilma (aide) came by to bathe Joe.  We also met with Jennifer, the social worker, who put me in touch with the ALS society here locally to find out what services and information are available to us.  Joe's Aunt Jean came by for a visit.  Our niece Stephanie stopped by after work to see her Uncle Joe.  My sister, Jenny, and her daughter Natalie, came to visit Joe and brought a few items from the store (2 packages of bagels....thank you!).  Jenny also said her neighbor was successful in obtaining a custom wheelchair van that we will use this weekend to get Joe to church.  We sure hope that we will be able to pull that off!  I think Joe is fearful that he will not have the energy to make it through.  I believe that he will!  God will look out for him.

 

Joe's cousin's fiancé, Dennis, stopped by to visit.  We gave back his Glad plastic container so he could make another batch of his jello/cool whip/fruit salad creation for Joe.  We all loved it!  Finally, both Jane (Joe's sister) and her husband Jeff stopped by at the end of the day to see Joe.  We love all the visitors, but Joe does get tired pretty quickly.  The power naps and length of them are getting noticeably longer. 

 

It never ceases to amaze me how many people read this blog daily.  I'm getting comments all the time about how everyone enjoys following Joe each day and taking part in his journey.  We do love to hear about how many of you are praying for him and our family.  It truly touches our hearts!  Thanks to all of you so much. 

 

I promise to add more pics tomorrow.  I just didn't have the time to spend scanning and cropping them today.