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!

 

April 13th - Saturday

 

 

 

Joe had a somewhat restless night last night, so he napped after a hearty breakfast (Cracker Barrel pancake with blackberries, OJ, milk and jello with fruit) for about 3 1/2 hours....with the breathing device on.  For some reason today, Joe had a much better appetite for the other 2 meals of the day.  Lunch:  PBJ (1/2 sandwich), 12-15 Tostitos scoops, and 6 oz. root beer.  Dinner:  Shredded breast of chicken with swanson's broth, carrots and mashed potatoes, and jello with fruit again. 

 

On the weekends, we don't have extra help during the day which is fine.  Since I am working around the house, it's perfectly fine to take care of Joe along with doing my chores.  The kids help out, too.  Becca worked with Joe on some of his range of motion exercises.  Dan helps with the lifting and transporting of Joe when needed.  Both help feed him.

 

We didn't have as many visitors today....most came mid- to late afternoon.  Again, with it being a nice day and the weekend, I realize everyone else has their own "honey do" lists to tackle.  Joe's high school friends (about 11 of them) had a 4-day golf outing in TN, so they asked if they could visit with Joe via Skype.  Surprisingly enough, we didn't have any technical difficulties with the set-up and the "call" went off without a hitch.  Joe really enjoyed seeing and speaking to everyone.  All of them promised to "have a beer" for Joe. 

 

Joe's sister Jane and her husband Jeff stopped by to visit before going to a late afternoon wedding that their daughter Stephanie was in.  Jane stopped by the store to pick up a bag of razors for me.....for shaving Joe.  Ed, Jerri and their son, Joe (from church) stopped by both before and after 4:30pm mass.  We asked if they could get us communion, and they needed our pic.  They also brought a few 12 packs of soft drinks for us, after stopping by the grocery on their way back from church.  Thank you all! 

 

I was having a whole bunch of issues scanning older pics that weren't taken with a digital camera.  Well, I got "trained" how to do it today, so Stephanie R. I won't need your help any longer.  I know what the heck I'm doing now, as evidenced by the 6 pics I scanned and cropped above.  Thank you anyway!

 

We continue to be amazed and astounded by all the help and support we are getting with Joe's care.  We cannot thank everyone enough!  

 

 

April 12th - Friday

 

 

Joe had a better night last night.  We now have very small pillows that go under each hand, and the forearm is on folded towels.  Previously, he was using bed pillows under his forearm and hand.  I think the larger pillow was helping to cut off circulation, and causing the tingling.  Joe is sleeping more during the day.  His power naps are getting longer, but it does help when visitors come over.  He continues to eat very well at breakfast, and not so much for the other 2 meals of the day.

Our 4th day shifter volunteer, Pat (a family friend), helped with Joe's care today.  She also left mid-afternoon to pick up Dan from school, while I stayed with Joe.  Thank you Pat!  I took today off work to get some paperwork and bill paying done.  So many interruptions with phone calls, etc. did not allow me to be as productive as I wanted to be.

Even though we only have hospice nurses at night for now, we still get an aid twice a week during the day for about 1.5 hours to clean up and bathe/shave Joe.  Hospice put in for an aid 5 days a week, and we got one on Friday, her name is Amber.  So, beginning Monday next week, we have a little extra help all 5 days a week....Amber on MWF and Wilma on TR.

Joe's cousin's fiancé (Dennis) stopped by to visit Joe and brought jello/cool whip with fruit...yum!  Two people came to visit Joe in the middle of the afternoon, and unfortunately, Joe was sleeping so they didn't get to visit (Kay-Taco Bell gang, and she brought additional Easter Candy, Reese Peanut Butter Eggs and 2 Almond Joy Eggs, and Tammy, a friend's sister-in-law, who delivered a dinner on the behalf of Joes' HS friends that started a dinner chain).

Our niece, Stephanie, stopped by to visit after school (she's a teacher) and before she needed to get ready to go to her friend's rehearsal dinner.  She is a part of the bridal party at the wedding on Saturday night.  Her parents, Jane (Joe's sister) and Jeff came by to visit in the early evening.  Joe's visitors are lighter on Saturdays and Sundays, and my guess is that everyone has their "honey do" list to get done on the weekends.  Our evening was pretty light, which gave me the opportunity to get a little more sleep myself.

I had a volunteer step up to help me with cropping scanned older photos (thank you, Stephanie, Joe's cousin's daughter).  As you can see from yesterday's entry, I could not figure out how to get just the picture without all the white background.  That help will start with tomorrow's pics, as I need time to scan the pics, e-mail them to her, and give her time to send them back.

Thanks everyone for always asking "what could I/we do to help?".  I've been taking a lot of you up on your generous offers to transport kids, do some grocery shopping, bringing us dinners, etc.  We appreciate everyone's generous offers.  Please continue to keep us in your thoughts and prayers daily. 

April 11th - Thursday

 

Joe is having issues with his arms falling asleep overnight, so he is not as comfortable.  When you can't move your arms and legs, it is very difficult to relax.  The only way to do that is to take medicine to help relax....Morphine and Ativan.  Joe is needing to take more of this each day.  The breathing device is still helping, but he is taking more naps in order to stay awake later in the day.  Joe is still eating well at breakfast time, but lunch and dinner, he is having a difficult time with consuming more than a few ounces of food.

Our 3rd day shifter volunteer, Cathy (from church), was a last second replacement for Laura (from church) whose child woke up sick and ended up with strep throat.  Thank you Cathy for filling in!  Thank you also to Laura, who still stopped by to deliver a few groceries she had picked up for me and briefly visited with Joe, at a distance, so she wouldn't expose him to anything she may have come in contact with (strep).   

Joe's Aunt Posey and cousin Mary Kay visited a second time this week.  As you will recall, they won the "long distance award".  They were able to visit other relatives while in town and spent a few hours visiting with Joe before having to leave to head back home.  Joe's sister Jane stopped by to visit with Joe and with Posey and Mary Kay since she didn't get to see them a few days ago.  Jane's daughter Beth brought her Uncle Joe his favorite breakfast item from Cracker Barrel....pancakes with blackberries. 

Our friend, Pat, stopped by in the afternoon to visit before leaving to go and pick up Dan from school.  She also took him to work for us (thank you Pat!).  Steve (Elder Class of '79) stopped by late afternoon to visit Joe and brought me a bouquet of flowers for being such a wonderful and supportive wife.  That was so nice!  Of course, all the flowers were purple and white!  For those that read the blog from long-distance....Elder HS school colors are purple and white! 

My sister, Jenny, stopped by to visit and take Becca out for an ice cream.  When she got back, Joe had mentioned that he wanted to try and get out to church again.  Jenny has a neighbor friend who has access to a custom van/wheelchair transport that we may be able to borrow next weekend so we can honor Joe's wishes and get him to Saturday afternoon mass.  She also told me that another person made a generous donation to the benefit fund.  However; this person made the deposit at 5th/3rd bank and we have no idea who it was.  Later in the evening, Ed (from church) picked up Dan from his part-time job and brought him home (thank you Ed!).  He also visited with Joe.

Can someone tell me why, when I use the scan feature for a photo, that it ends up with all the extra white space?  I need someone's help here.

Thanks everyone for continuing to keep our family in your daily prayers.  We are certainly feeling all the love from everyone!

April 10th - Wednesday

Joe tends to sleep pretty well overnight with the breathing device, but he is taking more medicine at night to help with anxiety and to relax his breathing.  With just the cannula (oxygen tube in his nose), his breathing is strained and he uses his upper shoulders.  His voice is more breathy.  With the bi-pap device, his breathing is assisted and comes from the abdomen and diaphragm, which is the way Joe should be breathing.  It's more productive and allows for the removal of the carbon dioxide in his lungs.  His voice is much stronger after he awakens from using the bi-pap.  Breakfast continues to be Joe's biggest meal of the day.  Lunch and dinner portion sizes are still pretty light. 

Our 2nd day shifter volunteer, Tom aka T-Bird (Joe's cousin), did a great job helping with Joe's care.  He even brought a crock pot and made cottage ham, green beans and potatoes for our dinner.

 

Joe got a visit in the morning from Kathy, the hospice massage therapist, which he very much enjoyed.  Father Westerhoff came by late morning after mass and brought everyone lunch from LaRosa's.  He gave Joe communion and used the holy water we have from Lourdes.  Steve (Elder Class of '79) stopped by to visit Joe, and Nancy (a friend of Joe's sister, Jane) stopped by and brought banana muffins.  Our friend, Pat, picked up Dan from school again for us....thank you!

 

In the evening, we had a whole bunch of people visit Joe including Scott (Elder Class of '79) and his wife, Debbie (who brought a dinner), Dave (Elder Class of '79 and our "best man"), his wife, Kathy, and their daughter, Lexi, and our friends Susie and her daughter, Missy, and Joe's sister Jane, and her daughter (our niece) Stephanie.  It was a gorgeous day here and it reached 80 degrees.  So, we decided to get Joe outside to enjoy the weather.  It was an entire group effort to get Joe in the patient lifter out of bed and into the electric wheelchair, and then move the oxygen machine out on the front porch (with a really long extension cord) and use the extra long oxygen tubing to enable him to travel down the new ramp and out on the sidewalk to the driveway.  See the group shot of everyone above.

Joe asked that I take pictures of everyone who visits from now on so I can post those on the blog. 

It sounds like a broken record, but we want to continue thanking everyone daily for all the love and support you have shown our family.  People are constantly asking me "what can I do to help you?".  We are so blessed to have such a wonderful support system.  We are so grateful!

April 9th - Tuesday

 

Joe usually does very well overnight with the breathing device, and that trend is continuing.  He is taking more medicine for those power naps, for anxiety and to relax his breathing.  Breakfast appears to be his big meal of the day.  Lunch and dinner volumes are not nearly as hearty.  Hydration, he is doing very well.  Tonight, I'm back to more vacation pics as we didn't have time to scan some older shots.

 

In the morning, Tom (Elder Class of '79) stopped by to see Joe.  Another former co-worker, Rick, drove down from the Indianapolis area to visit.  Our friend, Pat, helped us by picking up our son Dan from school (thank you!).  Our 1st day shifter volunteer, since we currently only have night time hospice help, Dennis (Joe's cousin's fiancé), helped us BIG TIME with Joe's care.  Thank you so much! 

 

We have a winner in the "longest distance to visit Joe" award.  It goes to Joe's cousin, Mary Kay, who drove from NJ to NC to pick up her mother (and Joe's aunt), Posey, and then drive to Cincy.  It was a total surprise for Joe, and he was so emotional that they made the long trek just to pay him a visit.  They brought a potted plant that we can later transplant to the yard.

 

Later in the day, our brother-in-law Jeff completed the assembly of the wheelchair ramp AND cut the entire yard AGAIN (thank you!).  Our niece Stephanie helped Becca scan and resize some older pics for the blog.  

Prayers are helping because Joe is continuing to feel all the love and encouragement everyone is sending his way.  We continue to be amazed and humbled by all the outpouring of love and support.  Thank you all!