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!
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