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.   

 

April 17th - Wednesday

 



Joe slept pretty well again last night.  We're still working on that raw nose bridge.  The sponge pads are working but there has to be a better way.  Maybe I need to contact hospice to get the respiratory therapist in here to evaluate if the mask needs to be adjusted or changed.  I don't want Joe to develop an infection.

Joe's cousin, Tom (aka T-Bird) helped us out today as our day shifter.  Amber (hospice aide) came by in the morning to bathe and shave Joe.  That is Joe's favorite time during the day, although it does tire him out and he usually goes down for a power nap right after.  Joe's friend (and former customer), Joe S., stopped by after his work shift ended to visit.  Our friend, Pat, once again picked up Dan from school and brought him home.

 

Steve and Dave (both Elder Class of '79) came by to talk to Joe.  They tried convincing Joe that they would try to arrange a field trip to get him out to an Elder baseball game.  We'll have to see how just going to church goes this weekend.  Joe tires out so easily.  We need to gauge how much time Joe can enjoy getting out without wearing himself completely out.  Another friend, Jack (Elder Class of ;79), dropped by to visit and brought along a dinner, too.  Thank you!  Joe's cousin's fiancé, Dennis, was going to stop by and visit, but the timing wasn't the greatest (I'll spare you the details), so instead he dropped off 2 Tropicana OJs for us.  Much appreciated!  Finally, Joe's sister, Jane, also came by to help with his care in the evening.

 

We love all the words of encouragement and prayer we get from people every single day.  It truly does help us get through the day.  Please continue to keep us in your prayer list.  Thanks to everyone for the love and support!

April 16th - Tuesday

 



Joe slept pretty well last night.  He does have an issue with the breathing device though....the darn thing is pretty invasive so it rubbed the bridge of his nose raw.  We have done just about everything to get it to heal.  We have covered it up with tefla pads and sponge type bandages to get it to scab over, but wearing the device (which is a necessity when he sleeps) continues to rub the area under the bandage and breaks open the boo-boo.  It's also moist inside the mask from the water in the oxygen machine to keep him from getting dried out.  So, we end up in a catch-22 situation.  Hopefully, we will see some success with the new sponge bandage he has on today.  That bandage has to be changed daily, so we will see if we can get that wound to scab over and heal.

Our friend (and "best man") Dave helped us out today as our day shifter.  He brought all the bad stuff to snack on (thanks!)....chocolate/caramels and mint dark chocolate M&M's.  Dave also helped us by dropping off Becca at her new job.  One of the hospice aides, Wilma, came to give Joe a bath, and work on range of motion exercises.  It felt good, but the process tires Joe out, so he needed a very long power nap.   

 

Our friend Kay (from Taco Bell group) stopped by to visit with Joe.  Our friend, Pat, once again came to the transportation rescue and not only picked up Dan from school, but also waited around to take him to work at his part-time job (thank you!).  Our niece, Stephanie, graciously agreed to pick up Becca at the end of her shift and brought her home with a pizza in tow.  She also helped me by feeding Joe his dinner.  Joe's sister, Jane, stopped by to help with Joe's care prior to the arrival of the nighttime hospice nurse.  At the end of the evening, our friend, Jerri (from church) picked up Dan from work, stopped at the store to pick up a few loaves of bread and then brought him home for us (thank you!).   

 

Everyone comments to me how much they love this blog I update every day.  I do too, but it is such an emotional time going through and picking out all the pictures to scan and crop to put on the blog.  Today's pics were very emotional for me, as it is so sweet to see Joe with the kids when they were small.  What a great dad he truly is!

 

We love you all and continue to feel all the love from you, whether it be in the form of a phone call, a facebook message, etc. offering to help in every way possible.  Thank you so much for being such a great support system for our family!

April 15th - Monday

 

 

Joe slept pretty well last night.  He was tuckered out again trying to do what you and I do fairly easily....go to the bathroom.  He had a lot of visitors today so those power naps were short ones!  We continue to only receive night time hospice help, so we fill the weekday days with friends and family who are so gracious to volunteer their time.

 

Our friend (and hairdresser) Vicki Y. helped us out today as our day shifter.  She made a pot of homemade vegetable beef soup on the stove while she was here helping with Joe's care.  We ate it for dinner last night and it was wonderful! 

Our friend Donna (who used to take care of Joe's dad when he was ill) stopped by to visit and pick up the shower seat she let us borrow.  A friend and classmate of my sister Jenny and a former student of our dad's, Mark (who also has ALS but a seemingly slow progression) called me to offer support and then stopped over to drop off 3 loaves of banana nut bread (yum!).  A childhood friend and elementary school classmate of Joe's, Judy, brought a few grocery items I needed (thank you!) and came to see Joe.  There were a lot of tears with her visit.  She would cry, then Joe would cry, then I would suck it up and went back to work, so I wouldn't cry. 

 

Our friend, Pat, once again picked Dan up from school.  My cousin, Mike (not Harry), was in town from Denver to see to his mother's long-term care, stopped over in the late afternoon to see Joe.  It had been a long time since they had seen each other and the tears flowed yet again.  Joe's cousin, T-Bird, stopped by but couldn't visit because Joe had just fallen asleep. Tammy and her husband, Greg, brought over a hot Mexican dinner (either Tacos or Taco Salad), but we already had the veggie soup hot and on the stove.  So, that will be a dinner for another night.  Our friend, Jerri, helped with transportation by picking up Dan from work.  Joe's sister, Jane, her husband Jeff (who cut our grass again, thanks!) and Stephanie came over to visit.

 

A big thank you to everyone for all the dinners, offers to grocery shop, kid transportation, etc.  We are eternally grateful for all the love you have shown our family.

April 14th - Sunday

Joe slept like a brick last night.  He was totally exhausted.  When you have ALS, all of your muscles are impacted, and that includes not only the arms, legs and torso, but internally as well.  So, swallowing, breathing and digestion are all affected....the contraction of those supporting muscles is impeded.  Trying to go to the bathroom is difficult, no matter how well you eat, the disease prevents the normal bodily processes from functioning as they should.  Needless to say, everything Joe does and has to do is a chore and saps all of his strength.  That's why those power naps with the breathing device become so important.  And all the help from the hospice staff has been wonderful!

It is so nice to see family and friends take time out of their Sunday to visit Joe.  Our friend Regina drove down from Springboro and brought lunch (yum....Chipotle!).  Joe's cousin Holly and her daughter, Natalie, came all the way from Milford and in lieu of picking up some grocery items, they picked up a gift card (thank you!) for us to use.  Don (Elder Class of '76) and his wife, Janet, stopped by and brought a "We Love You" balloon that all of Joe's visitors are supposed to sign.  Joe's sister Jane, her husband Jeff, and their daughter Stephanie stopped by to offer their support.

 

It was a very long day today, so my narrative is much shorter than normal.  Thank you all for your ongoing support and concern for our family.  Keep praying for a miracle!