Latest from Roni

This is Roni writing.

Kevin has been wanting to write a new blog update — his goal had been to get one done last week after all the family visits were over — but he's been too tired to think through what he wants to say. I'm hoping he will feel a bit stronger and we'll be able to work on sharing his thoughts in a posting this week. 

Kevin’s pain is now fairly well controlled with narcotics, but he has very little appetite. He does eat small amounts of food throughout the day — mostly cold creamy things like pudding, ice cream and yogurt and protein drinks. The loss of appetite is due, at least in part, to his body being less able to process food. Hospice says to concentrate on his comfort and not push him to eat.

Kevin’s breathing is labored (he’s on oxygen 24/7), and the least little effort gets him winded. He has to be supported now when he walks down the hall, and he sits to brush his teeth. He’s sleeping a lot, but never for more than 4-6 hours at a time, as he wakes due to breakthrough pain or wheezing. On Wednesday, Kevin was having a bad morning after a very restless night with lots of difficulty breathing. We called Rabbi Bruce, and he was here in minutes to pray with and for Kevin. Since then sleeping at night and breathing have improved overall. Even though Kevin still wakes up, he is now falling right back asleep after taking meds. or nebulizing, instead of staying awake like he had been. His nurse was here this afternoon, and she will talk to the doctor about increasing the steroid dosage in hopes that that will further alleviate the wheezing and muscle pain and maybe help increase his appetite as well.

In daytime, Kevin dozes some, but is fairly alert and cognizant when awake. We continue to have visitors, and though he doesn’t always interact fully, Kevin tends to rally when there are people around, becoming most animated when showing pictures or telling stories about his life. In addition to frequent visits from neighbors/friends/Beth El members, we’ve enjoyed recent visits from Jeff, Kevin’s previous boss at Time Inc. (Jeff brought an iPad with him; Kevin perked up to play with that!) and Neil and Debbie, old friends from Philly. (I’ve known Neil since we were teenagers and Debbie since our early twenties.) We are blessed to have so many caring people in our lives.

Speaking of caring people, since the last posting, we’ve enjoyed more visits from family. Kevin’s sister and her husband returned to Oregon on Saturday 11/6. The next day, my family – Mom and Dad, brother Rohn and sister-in-law Wendy, my niece Alanna, her husband Justice and my nephew Zach — rented a mini van and drove up together, bringing a yummy dinner with them. After a really nice visit, all but my parents returned to Philly. Mom and Dad stayed through Wed. morning. It was good being with my family as I haven’t been able to get to Philly to see them as often as I would like.

The following Thursday evening Kevin’s nephew Scott, his wife Tausha and Kev’s niece Hannah came for a long weekend. We asked them to go and play in Manhattan during the day and come back to regale us with pictures and tales of adventure in the evening. We’ve had the joy of introducing Scott and Hannah to the great playground of Manhattan on previous visits, and now it was their turn to share their love of the city with Tausha, who was seeing it for the first time. On Sunday, the kids (they’ll always be kids to us) announced that Scott wanted to stay with Kevin while I went into the city with the girls. The weather was gorgeous, and we walked for hours in Central Park, went to Zabar’s and saw a museum exhibit while Kevin and Scott bonded by watching Henry V, one of Kevin’s favorite movies. Most meaningful was when Kevin gave both Scott and Hannah treasured items that in some way signify a special joy or memory he shares with them; there were tears, hugs and lots of love.

Even though I no longer have house guests to feed, friends and congregants are still providing small prepared meals to help keep the caregiver healthy. I’m so grateful because not being on a fixed schedule, I sometimes forget about meals until it’s meal time and I’m hungry. When that happens, there’s always something at the ready that I can just heat up. What a blessing!!!

Hospice has been great. I can call anytime with any question or concern, and they either put me right through to the person who can help, or someone calls back within the hour. A nurse comes twice a week to check on Kevin, order any meds that are needed, provide tips for ways to make Kevin more comfortable, and answer any questions we have. If needed, she is available to come more often, and there is always a nurse on call for any emergency.

After not being happy with the first aide hospice provided, we asked our congregation to pray that G-d would send us someone wonderful. That prayer was answered with the arrival of Rosalee, who is not only capable and attentive, but sweet and loving. She’s here for four hours every weekday afternoon, which enables me to get out to run errands, take Elke for long walks and romps in the park, or nap. She loves Kevin and refuses to let her agency reassign her. She told me today that she has never thought about or cared about another patient the way she does with Kevin.

G-d has continued to be near to us in some very tangible ways. Though this is a very sad time, we are so grateful for spiritual strength and peace in the midst of it all. We keep hearing that there are people praying for us every day, and we feel sustained by those prayers. Thank you. Thank you. Thank you!

I just want to say that I'm sorry for not being able to reply individually to all the emails and voice mails, but I read and listen to all of them, and share them with Kevin. Your kind words continue to mean so much to us.