Tuesday, May 21st - Funeral Arrangements

Joseph C. "Joe" Mueller

November 18, 1960 - May 20, 2013

52 years young

 

Visitation:

Friday, May 24th:  5:30pm-8:30pm
Meyer & Geiser Funeral Home
4989 Glenway Avenue (opposite the Covedale Center)
Cincinnati, OH  45238
513-921-4144

Mass of Christian Burial:

Saturday, May 25th:  10:00am
St. Lawrence Church
3680 Warsaw Avenue
Cincinnati, OH  45205
513-921-0328

Monday, May 20th





It is with tremendous sadness and sorrow that I report to all of you that my beloved husband and partner in marriage for these last 21 and 1/2 years, Joseph Charles Mueller, has passed away at the age of 52.

Joe left this earth, to be with family members and friends that have gone before him, this afternoon at approximately 3:35pm.  After closing off visitors last Wednesday, May 15th (which also happened to be my birthday), Joe headed rapidly downhill the next day.  He was awakened from sleeping and was completely catatonic....blank stare and no response.  It was quite shocking and took all of us by surprise.  I'm pretty sure, although we will never know, that he may have had a stroke.

The doctor found that Joe did have blood clots in his legs and lungs just prior to his original neurological diagnosis in late December of 2012.  He was on blood thinners until we received the awful ALS diagnosis on Friday, March 22nd of this year.  At that point, hospice was called in because the doctor gave Joe only 6 months to live.  With his passing today, we did not even make the two-month mark.  Although Joe had a more rare, aggressive form of this horrible disease, we're feeling very lucky in that he didn't suffer for years and years like many of those who are diagnosed with ALS.  His first symptoms did not appear until early November of last year.

Earlier today, we decided as a family that living in a vegetative-type state was something that Joe never wanted.  So, he was administered the maximum dosage of pain medications, and then we gathered as a family by his bedside.  I spoke to him and explained that we did not want him in pain any longer, it was OK to leave us although we would miss him terribly, and then we removed the bi-pap breathing device.  The equipment that assisted his breathing during this awful disease had basically turned into an external ventilator and was keeping him breathing....but he was not living.  As a family, we said the Our Father, Hail Mary. and the Memorare.  Within a few minutes, Joe took his own unassisted last breath, opened his eyes and then peacefully passed away.   

We have not finalized funeral arrangements at this time.  When I do know them, I will pass them along in this blog.

May 13th - Monday & May 14th - Tuesday

Effective today, May 15th, I've officially closed the door on visiting Joe...unless you're family. 

Although we've loved the visitors, it is now the time for us to spend Joe's remaining days with him as a family.  We are now back on hospice continuous care.  I'd like to take the opportunity to thank all of you who so graciously volunteered your time to help Joe with his care, and be his "day shifters".  I'd also like to especially thank Pat B. for volunteering to be our lone "night shifter" and sleep next to Joe on our couch to be there when he awakened at night.  I know this was difficult for her physically to sleep on our couch.  She went above and beyond the call.....she said she'd do anything for Joe because he's like her son.

Monday:
Our day shifter today was Becca!  The day time was fairly quiet...no visitors.  And then, early evening Greg S. (brother of Joe's friend Don) stopped by with a dinner.  Joe's sister Jane, and her daughter Stephanie stopped by to visit Joe.  Jane's husband, Jeff, cut our grass again.  It looks great, Jeff, thank you!  Sisters and our friends, Kathy H. and Karen K., stopped by and each gave me a piece of strawberry cheesecake.  They brought 2 concrete molds to make a cast of Joe's handprint.  Karen also brought several magazines to browse through.  My sister, Jenny, and her son, Erik, also stopped by to see Joe.

Tuesday:
Our day shifter today was Tom F. (Elder Class of '79).  Today was a very busy day.  Father Mark and Sister Helen Julia stopped by to see Joe and give him anointing of the sick.  Dave B. (Elder Class of '79) stopped by to visit and brought us some Yoplait yogurts.  Our friend, Sandy F. from Naples, FL (member of the Florida vacation "fam-damily") wanted to help with a dinner, so we picked our favorite Chinese restaurant (Wok of China) and she called in our order, paid for it, and we picked it up.  It was delish! 

Donna B., wife of Joe's friend Tim B. (Elder Class of '79) stopped by to visit Joe and brought us a dinner.  Our friend, Kay (from Taco Bell group), also brought a dinner.  Our friend, Kathy H. mixed and set up the concrete mold/stepping stone and we placed Joe's right hand print in it.  I decorated it, and then placed lettering on it.  It will be a wonderful keepsake.  More friends came by to visit.....Mike C. and Steve C. (Elder Class of '76 and '78), Don S. (Elder Class of '76) and his wife, Janet.  Joe's former customer and good friend, Jack M. drove down from Dayton to see Joe one last time.  And, Joe's sister, Jane came by to see her brother.

Now that we have hospice help back, we know that the end is nearing.  This is such a horrible disease, but I know that when Joe leaves us, he will no longer be in pain and gasping for his next breath.  I'm very sad now knowing that our time together is short, but I also look forward to Joe taking his next step and joining his parents in heaven.  He misses them terribly and was very close to both of them.  I told Joe not too long ago that if dying is like it was portrayed on one of my show favs, Ghost Whisperer, that he should not go into the light right away so he could stay awhile and let us know he was OK.  Then, it was fine for him to cross over into the light.

Please continue to keep our family in your prayers.  I will miss my husband and best friend very much, and the thought of him leaving us very soon is hard to accept.  Thanks for your understanding as we spend these last days with our immediate family.  Your support is so greatly appreciated.

May 9th - Thursday through Sunday, May 12th





For those of you who have been following this blog and Joe's journey, I need to let you know that if you want to stop by and visit, you need to do so this week as I don't know how much longer Joe will be able to have visitors.  Joe is struggling with his breathing more and more.  His voice is gone, and only but a whisper.  He is almost continually on the bi-pap device to assist his breathing and sleeps most of the day.  When you call or text, know that I have done the best that I can in terms of letting you know when it is a good time to visit.

Thursday:
Our day shifter today was Becca.  Joe's Aunt Jean and our friend Kay, stopped by during the day, but Joe was sleeping.  Our niece, Stephanie, brought by poster board for Dan to work on a school extra credit project and to visit with her Uncle Joe.  Jeff, our brother-in-law, once again came over to cut the grass for us.  Our friend, Karen K., stopped by and GOT MILK for us.  Andy H. (Elder Class of '79) brought us a dinner and danish for breakfast, but Joe was dozing off again....although I did get a picture.  By the way, Joe's ginormous scab on the bridge of his nose finally fell off.  YAY! 

Friday:
Our day shifter today was Pat.  Joe's cousin, Lisa (who came into town from TN) and her mother, Aunt Mary Jane stopped by to visit and brought us a hanging plant for our shepherd's hook in the front yard.  That was well timed, because I hadn't yet been to Home Depot to get our plants yet.  Thank you!  Our friend, Kay stopped by and brought candy for Joe's sweet tooth and a gift card.  Joe's sister, Jane, brought us a few tubes of toothpaste and came by to visit with her brother.  Jerri and Ed B. (our friends from church) brought Dan home at the end of his work shift.  Thanks to all.

Saturday:
Our day shifter today was Becca and me.  Steve M. (Elder Class of '79) stopped by to see Joe but he was sleeping.  Our neighbors, Mary Alice M. and her daughter, Katie, brought us Tropicana OJ, lunch from Arby's (French Dip subs and Jamocha shakes....OMG), and flowers for me for Mother's Day.  She tried to tell me they were from my son, Dan, but he didn't claim them.  MA, thanks for thinking of me.  It means a lot.  Jerri and Ed B. (our friends from church) picked up Dan from his work shift, stopped by with a couple of soft drink 12-packs, and brought back communion from 4:30pm mass.  Thank you everyone!

Sunday:
Our day shifter today was me!  Joe's sister, Jane, stopped by to visit with Joe.  My sister, Jenny, and her husband, Steve, came by with a jello creamsicle pie.  Joe had a very rough Saturday night and Sunday.  He was very anxious, normal med dosage didn't seem to help, he struggled with coughing, was sweating profusely and he could not get comfortable.  He also didn't eat or drink much of anything all day, so his output was limited, too.  When he was off the bi-pap for a very short period of time, he struggled to focus his eyes on you.  I asked him if he felt drugged, to which he responded with a head nod of yes.  I got worried and called hospice.  They sent out an RN to evaluate him.  She determined that he didn't get more than 3-4 hours of sleep at any one time and he was just plain exhausted.  However; since she had only just met Joe, she also commented that we could be entering the next phase in this horrible disease.  I upped his meds so he could sleep through the night.

I apologize for leaving all of you hanging these last few days....wondering about what was going on.  It was a combination of long days, not having the energy to update the blog and 2 days of waiting for security software updates to load on my laptop.  UGH!

Keep our family in your prayers as I think what the RN said about moving into the next phase is correct.  I find myself crying more and wondering "why Joe?".  It's so unfair that someone so vital is being totally stripped of everything and wasting away right before our eyes.  It kills me to not be able to take the pain and frustration away.  You try your best to keep things upbeat but even that is getting next to impossible to pull off these days.  It helps to know that all of you, our support system, continue those prayers for Joe and our family every day.  We thank you!

  

May 6th - Monday, May 7th - Tuesday & May 8th - Wednesday

 

 

I'm only sharing one picture today.  Joe's had several visitors over the last 3 days, but this picture is very telling.  Joe is using the bi-pap device more and more, and interacting less.  The last 2 days, he's been very nauseous.  We went from 1 nausea med to another.  The latter helped more, but still not feeling well.  Joe's voice now is mostly a whisper.  He does have a voice that comes and goes and he gets frustrated when he tries to talk and not much comes out.  His anxiety is pretty high, so he's asking for more meds.

Monday:
Our day shifter today was Becca!  Joe hasn't slept well in the last few days due to nausea.  When he does eat breakfast, it's either 1 soft boiled egg or very small cup of Life cereal, some jello or tapioca.  Then, its more meds and back to sleep.  He's coughing more often.  His lungs are completely clear, it's only attaching to his voice box and rattles.  He doesn't have the strength to cough it up.  And, it's not up high enough to have it sunctioned out.  We've been trying Robitussin, and it calms the cough.  The nebulizer (with albuterol) treatments works very well.  It seems to stop his cough completely.  But, it does wear him out.

Our friend, Laura R. (from church) texted and offered to bring a few grocery items over in the morning.  When she came by, Joe was sleeping so she didn't stay.  The rest of the morning and afternoon was pretty quiet.

Later in the day, our friend Regina (from work) brought Joe some fresh squeezed OJ and "heavenly hash".  Unfortunately, Joe couldn't enjoy any of it....nauseous again.  UGH!  Joe's sister, Jane, came by to visit and stopped up the street to bring back a 2-liter of room temperature 7-Up for the sour stomach.  Thank you!

Tuesday:
Our day shifter today was Vicki Y. (our hair stylist).  She helped me quite a bit with laundry, and general cleaning.  I appreciate it very much!  It was a very quiet day and night.  It's the first time that Joe had absolutely no visitors. 

Wednesday:
Our day shifter today was Cathy M. (from church).  It was a much busier day all the way around.  Joe had another coughing episode that required a breathing treatment.  Then, he slept much of the day.

Later in the afternoon, our friends Pat (Elder Class of '79) and his wife, Lynn, stopped by to visit Joe and brought us a dinner.  Thank you!  Several other friends made return visits to see Joe including, Dave B. (Elder Class of '79), Mike C. (Elder Class of '76), Steve C. (Elder Class of '78) who also brought a few 12 packs of soft drinks, my sister Jenny and her son, Erik, who brought 2 boxes of Life cereal. 

Jane, Jeff and Stephanie all stopped by.  Jeff tried to rig something for Joe to allow him to get our friend, Pat's attention when he awakens during the night.  With the oxygen concentrator on, and the noise it makes, its hard for Joe to make enough sound, while wearing the bi-pap, to awaken Pat who sleeps on the couch next to him.  Joe has minimal use of his hands/fingers, but we tried to use a wireless door bell under his hand.  He doesn't have the strength to depress the button.  We also tried putting the same control on his bi-pap mask strap so he could push his head against the button, but that wasn't comfortable.  Jeff ended up using a sleigh bell strap with a string coming from Joe's bi-pap mask and draped over the pillow behind him and balanced on the edge of the bed.  When he wakes up, Joe pulls his chin forward, which pulls the bell strap forward.  It falls over the edge of the bed to make a loud jingle sound.  Success!    

This is the last time that I will allow myself to get 3 days behind on the blog updates.  It's too tough trying to remember everything.  My apologies, if I did forget.  As always, thank you for your continued support of our family.

May 4th - Saturday & May 5th - Sunday



Saturday:
Our day shifter today was me!  Joe is sleeping pretty well, only to awaken for bathroom breaks and a drink.  The bi-pap device really dries you out.  His breakfast was small.....a soft boiled egg and tapioca.  He tells me he is trying, but always feels full.  He slept much of the day.

Our friend, Pat, took Dan to work in the morning for me when she left.  Our friend, Ed B. (from church) picked up Dan from work at the end of his shift and brought him home.  Thanks to you both!  Later in the afternoon, our friends from church, Ed B., his wife, Jerri, and their son, Joe brought us communion after 4:30pm mass and to visit with Joe.

In the evening, our friend, Kathy H. stopped by to visit with us.  Joe's sister Jane, and her husband, Jeff, came over.  Jeff finished cutting the grass that he had started during the day.  He had to make two passes across the yard because it grew so fast and was too high....from all the rain.

Sunday:
Our day shifter today, again, was me!  Since it was the weekend, there are no hospice aids here for bathing and shaving so I handled at least the shaving part to keep Joe looking his best.

Our niece, Stephanie, came over to visit her uncle and take her cousin, Dan, out for some extra practice driving the car....in the rain.  She also helped Becca with cleaning her room and adjoining bathroom.  My sister, Jenny, and her son, Erik, stopped by to see Joe, but he was sleeping.  They had made a lime jello/cool whip pie since Joe has really enjoyed his desserts lately.  Many thanks!  Late afternoon, our friend, Kathy H. came by to help Joe with a video he wanted to make.

In the evening, Steve S. (Elder Class of '79) stopped by to drop off a dinner and visit with Joe, and encouraged him to keep fighting.

Thank you to all that continue to support us by following the blog.  It helps to keep me and my family going during this very stressful time in our lives.  We love you all!

May 2nd - Thursday & May 3rd - Friday



We took delivery of a nebulizer machine to give Joe breathing treatments when the coughing becomes too much.  We also have a suction machine to help rid Joe of the stuff he can't quite cough up.  Fortunately, the nebulizer is helping to loosen the secretions and I haven't yet had to use the suction machine.  I'm not looking forward to having to use the suction machine.   

Thursday:

Our day shifter today was our friend, Pat.  Joe continues to wake fairly early, has breakfast, his meds and then watches a little TV before taking a power nap.  Joe's breakfast is fairly small...usually a very small cup of cereal and either jello with fruit, tapioca or yogurt.  He's trying to eat, but he always feels full.  As you can see from pics posted with his visitors, Joe continues to lose weight.

Wilma (hospice aid) came by in the afternoon to bathe Joe.  Our brother-in-law, Jeff, cut the grass for us.  Ever since the lawn service company put down the weed and feed and we've been getting the rain, the grass has just taken off.  This makes for quite a job keeping the grass cut.  We use a mulching mower, so the job is really a big one.  We can't thank Jeff enough for handling this huge job for us right now.  Thank you so much!  Dave B. (Elder Class of '79) came by after work to visit Joe, and stopped by the grocery store pick up some Yoplait yogurts.  My sister, Jenny, and her son, Erik, came by to visit.  Mike W. (Elder Class of '79) and his wife, Tina, also came by to visit with Joe.  They told us about another Elder grad, a few years behind Joe, who was also diagnosed with ALS last year.

Friday:

Today's day shifter was our friend, Bob, (and later, Becca, when he had to leave) who helped me deal with AAA who had to come and unlock our Camry that was stuck in the garage.  Somehow, the security system malfunctioned and it locked all the doors.  The key fob that we use to unlock the car was not working, and for some reason none of the keys will open the door locks.  AAA tech unlocked the door and said most likely the security system was the problem and to take it to the dealership for service.  Bob suggested we keep all the windows down, just in case.  We needed to get that car out of the garage because it was blocking the mower, which I had to move outside so the tech could come and change the belt that got shredded the other day.

Amber (hospice aid) and her trainee, Christine, came to bathe and shave Joe right after breakfast.  He enjoys those baths, but they always tire him out.  Afterward, Joe took another one of his power naps, so Bob didn't really have to do much for Joe, but he helped me quite a bit, by helping to fold the laundry, which was greatly appreciated. 

Later in the day, Jack W. (Elder Class of '79) stopped by to drop off a dinner (thanks!), but he couldn't visit because Joe was sleeping.  Early evening, Donna D. and Judy B. (both OLV grade school classmates), came by to reminisce about the old days and brought several class pictures. 

We are thankful for the many blessings we have from all the love and support of our friends and family!

April 30th - Tuesday & May 1st - Wednesday



For those of you planning on coming to visit Joe, I would do so sooner vs. later.  His breathing is becoming more labored and he is asking for the bi-pap breathing device more and more.....whether he's asleep or not.  He's had a nagging cough, and its very difficult to rid his throat of the secretions that seem to lay on his voice box.  Joe doesn't have the power to cough like you and I do because his diaphragm is so weakened by the ALS.  The disease is rapidly taking a toll on Joe's body. 

Tuesday:

Our day shifters today were our friend, Pat, and our daughter, Becca. Mornings, during the week, are usually pretty quiet except for the regular visits by the hospice nurse case manager.  They come now 3 times a week to evaluate Joe and his symptoms.  Joe usually gets up early, has breakfast, his meds and then watches a little TV before taking a nap.  The naps are getting longer now, and the food intake is getting less.  It is very hard to watch your loved one's physical appearance change.  Joe has lost quite a bit of weight.

Wilma (hospice aid) came by in the afternoon to bathe Joe.  Peggy K., who was married to Joe's late cousin, came by to visit.  She also brought a couple of Tropicana OJs for us.  Thank you!  Later in the day, Joe's sister, Jane, and her daughter, Stephanie, came by to help with Joe's care.

Wednesday:

Nights continue to be pretty quiet except for that darn coughing.  It doesn't typically start after eating or drinking, as one would think.....you know, something going down the wrong way.  It will be several minutes after eating early in the morning, and then the nagging cough starts.  Sometimes, we give Joe some Robitussin to loosen the mucous.  It just lays there on his voice box and rattles.  He doesn't have the power to cough up anything.  I have to push down on his stomach as he coughs to provide a substitution for the diaphragm that is no longer providing lung support.

Today's day shifter was Lisa, who offered to help with Joe's care after she met him for the first time a few weeks ago...transporting him in the handicapped accessible van to church.  Lisa is my sister, Jenny's, neighbor.  She was here only part of the day, but boy did she help me, along with taking care of Joe.  Lisa completely cleaned out my frig, reorganized all the hospital supplies and medicines, and did some general cleaning.  She also brought several choices for dinner.  Thank you so very much!

Amber (hospice aid) and her trainee, Christine, came to bathe and shave Joe right after breakfast.  Later in the morning, Joe had a surprise visit from his physician, Dr. Bort, and Stephanie, who was there to observe.  When Joe had transferred from UC hospital NeuroScience ICU to Mercy Western Hills Hospice wing for 2 days until I got the house ready, Dr. Bort told Joe he would come to the house to see him.  Joe was thrilled, as he and Dr. Bort are also good friends.  At the end of his visit, all of us at the house encircled Joe's bed and Dr. Bort led us in prayer. 

Later in the day, Trish D. (went to a HS dance with Joe) and Sue D. (a friend, who has an interesting nickname for Joe) stopped by on their way home from school.  Trish gave us a gift card and Sue brought some homemade Italian soup...she got the recipe from the Olive Garden website.  We can't wait to try it.  Joe's sister, Jane, her daughter Stephanie and Jane's husband, Jeff, all came over to help.  Jeff cut our grass, or at least tried to....right in the middle of the job, the belt on the riding mower shredded.  I've already called the company to come out on Friday to replace the belt. 

We did get doctor's orders for a nebulizer and suction machine to help Joe with productive coughing.  I will be administering the breathing treatments when Joe is in distress.  It's the same treatments those with chronic asthma or cystic fibrosis get.  Then, the suction machine allows you to vacuum out the mouth and back of the throat after Joe is able to cough up loosened secretions.  The process can be invasive so the key is to take care of this quickly before it causes too much anxiety.  Hopefully, I can be calm under pressure.

Your support of our family through this ordeal is so wonderful and we appreciate everything you do for us! 

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.   

 

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!