New territory

This time I am writing in my Dad's new room at a beautiful Hospice facility in Jacksonville. I am going to be very honest and open about the process of what took place. Someone may read this and feel like they would have made a different decision. But, talking with my precious daughter-in-law, who is a seasoned blogger, she encouraged me to share it all. It is my desire that this blog and what I share here will be a blessing to someone. Maybe, what I have experienced will help someone else at a time when they may face a similar situation.

Okay, now that I have prefaced it, here we go. Last night I got out the paperwork for Hospice to show that I had the medical power of attorney and their living will directives. As I was reading it I discovered that we were functioning outside of my parents desire for their end of life. The directives were very clear as to their intentions. Continuing to use the feeding tube in the condition that my Dad is in was directly against their desire. My brother, Richard, who is here with me at this time also read the the living will and agreed with me that we needed to discontinue the tube feeding.

This was, understandably, a tough and painful discovery! We cried together and prayed together for wisdom and strength and then went to bed only to struggle with sleep. (He went to his room and I went to mine with Sam). :) I got to the hospital early to in order to not miss the doctor on his rounds this time. I told him what we had discovered and suggested that we were not honoring our parent’s wishes and he responded, “no, you are not. I see it all the time.” He was not unkind, just direct with us. He totally supported our decision to stop the tube feeding. After we talked for awhile, he went out to the nurse's station to immediately write the orders for Hospice and in about an hour, the Hospice representative was there to talk with us and sign the papers necessary to make the move.

In the meantime, I knew that I needed to talk to Mom about this decision and I also had to check on her leg that she had been having pain in. They came to the nursing home this morning and did the test on her leg and she did not have a blood clot for which we are very thankful. She was sleeping when I went into her room so I went to find the Unit Manager/Nurse to tell her what was happening with Dad. She was in a meeting so I left a message for her and went back to Mom's room. I checked on her leg and then Mom asked me how Dad was. I told her that I was there to talk about him and then asked if she remembered years ago when they signed the papers about the the way they wanted things to be handled for them at the end of their life. She said that she did. I then told her about Rich and I and the night before and understanding that we were not following their wishes. She said that she agreed with us and that it was the right thing to do and that she had always prayed that he could go first because he would not be able to survive without her. We cried together but she continued to assure me that we were doing the right thing. I had called Frances to come and be with Mom because I didn't want to leave her alone right after and conversation like that and I knew that I would have to go back to the hospital to meet with the Hospice nurse to sign the papers.

Sam called to let me know that the nurse was ready for us so I went back to the hospital. Nila and B.J. sat with Dad while Sam and I talked with the nurse and I signed the papers. We were blessed to have a room available in a facility as it can sometimes take up to a week or more to have an empty bed for someone. Dad was transported about 1:30 this afternoon. The nurse had indicated that it would be a couple of hours before we could see Dad and that they would have a meeting with us. It didn't quite work that way. We waited in the parking lot for quite awhile watching for the ambulance to arrive. It never did. Or so we thought. There was a back entrance that we knew nothing about and he was in his room snoring away by the time we decided to check. The doctor had already checked him and had to come back to the room later to chat with us. Very nice doctor!

After we saw that he was settled in, Sherri and Mark brought Mom over to see Dad. It was quite an emotional time for Mom and the rest of us as we watched Mom love on Dad and cry for him. Mom couldn't take it any long. She turned to me and asked if I was ready to go yet...in other words, she was. So we made plans for Sherri, Mark, Rich and Nila to take Mom to supper at Cracker Barrel. Sam and I stayed in the room until NIla and and Rich returned from eating dinner. Sam and I got dinner. We wee given a patient tray of food that was YUMMY. We shared. I had so wanted to write more but I am falling aalsleep...............g'nite for now. Can't stay awake.

Watching and waiting

As I am writing this, I am sitting beside Dad's bed in the hospital. I'm sorry that I haven't updated this before. Yesterday was a bit consuming for me and I couldn't get the computer online. By the time I got home it was after 9PM and I was too tired and wanting to just get a shower. We are all trying to stay clean and not get anything from the hospital. :(

Yesterday Dad was responding and smiling and trying to talk -- almost a chatter. Unfortunately, very little of it is understandable. He did smile when I came in but when Sam came in later he raised his hand and said clearly enough for all of us to understand, "oh, look who's here!" Amazed us all. He was awake most of the morning. We brought Mom in to see Dad and he was happy to see her. She sat for awhile with him and held his hand and when he started to get sleeping and snoring and then his body started jerking alot.......(several hours later)...we decided that it would be better to take her back to the nursing home. Sam and Sherri took her for lunch first.

Okay, now. I had written two more paragraphs explaining alot of stuff and due to a technical malfunction, I lost it all. Now I am home from the hospital, have eaten a late supper and am trying to finish this, again, so that those who are waiting for an update will have one. I'm sorry that I haven't been able to do this sooner but please understand that it has been almost non-stop today, especially.

Today, Dad was much less responsive and even less coherent in his conversation. When he sleeps, which is most of the time, his body will spontaneously start to jerk, shake and jump. He will start to reach for something in the air or point. Sometimes he is very agitated and panicky. If you are holding his hand, at times he will squeeze so tight that it feels your hand will break. One time yesterday when I was holding his hand, he squeezed tightly and moved my hand as if he were shifting gears of a car.

His vital signs are good and stable. His oxygen levels have been above 90 all day. The hardest thing for us all to watch is the almost seizure-like body movements, his agitation and his inability to clearly communicate. Today we called Hospice to come in and talk to us about the possibility of their care for Dad. The representative that came was wonderful. She seemed to indicate that he would qualify but we needed the doctor's counsel first. She left the information for the Dr. on the chart for when he comes in tomorrow morning. I will be at the hospital early tomorrow so that I might have a chance to talk to him about this.

We had an upsetting day today (we, meaning the family) because of the nurse that was assigned to Dad's care today. When I got to the hospital this morning she was preparing to give Dad his meds by mouth!!! He can't have anything by mouth in case he were to choke because he can't swallow. It's in the chart!! She had the meds on the table with applesauce ready to give uncrushed meds in the applesauce. She didn't even have a crusher there until I said, "did they tell you how to give the meds?" I told her they went in his feeding tube. She said, "oh, he doesn't take anything by mouth?" I get angry again just writing about it! I proceeded to tell her how to give it and she said, "Oh, I'll go get the crusher and be right back." I won't bore you with the details but the rest of the day went on like that. I was watching this "lovely" lady's every move! Nila and I gave the night crew and real once over before we felt safe to leave Dad for the night. The night nurse and tech were awesome and said they would take good care of him all night and we believed them by what we saw. I'm going to try and finish this post soon so that I can get to bed because I intend to be at the hospital by 7:00 am.

Mom has some leg pain going on that we also are needing to address. Grace is her nurse at the nursing home tonight. I left Nila at the hospital with Dad earlier and went to check on Mom because she was complaining so much about the leg pain. Grace had been taking care of her and given her Tylenol. I expressed concern about a blood clot and Grace put in a call to the doctor who said that they should do a veinous doppler tomorrow. We are staying busy here and I am so grateful for having Nila her and Rich at this time.

If this doesn't make sense and/or you have any questions because of this post and my writing it tired, please don't hesitate to ask!! (I'm not even taking the time to proofread it..I'm going to bed now.)

Challenges, fears & trust

As I right this update we are traveling home from Pennsylvania to Florida. We were to have been heading to Ohio today for the rest of our vacation. After we had left Allentown and just started out on our day of driving, Sherri called. She had just gotten a call from B.J. (our house cleaner who has become a great friend and who loves Mom and Dad as her own parents). She had gotten to the nursing home to check on Mom and Dad early and discovered that Dad was burning up with fever. She checked him out to see if there was infection around the entry place of the feeding tube, etc. Sherri immediately proceeded to the nursing home. Just before she arrived they had tried to give Dad his meds in his feeding tube and he promptly threw up everything they put in his stomach. In the process of throwing up, he choked badly (as if you can choke goodly). B.J. said his lips turned blue at one point and the nurse believed that he had aspirated. (Now the concern is that he could get pneumonia from having this foreign matter in his lungs.) Sherri spoke with the head nurse who said they could do a chest xray to see if this had indeed happened. She also communicated to Sherri that they could have him transported to the hospital if the family pushed and said that was what they wanted. Sherri and I concurred that this was our desire. The last time they did a chest xray at the nursing home to check for aspiration, it took over 24 hours. We also were anxious to find out what was causing the high fever.

Kathy and Carmen had planned to go to Orange Park today from St. Augustine for some errands. They had planned to see Mom and Dad while they were there. I called them to catch them up to speed on what was happening. They went to the nursing home shortly after that. Sherri said that when they arrived and Kathy said her perky hello to Dad that he brightened up, his eyes twinkled and he smiled. He later tried to kick Carmen at the foot of the bed (his way of teasing with Carmen). That was an encouraging moment.

They decided that Sherri would go to the E.R. with Dad and B.J. would get lunch and then relieve Sherri for lunch. Kathy and Carmen stayed at the nursing home with Mom to make sure she understood what was going on and to keep her company for awhile.

So now we wait...for the chest xray and blood work results at the hospital. Dad is on an IV in the E.R. and their goal is to keep him comfortable right now.

Nila called me a little while ago after getting the latest news by way of text message. (This is a great part about sharing things as a family and holding each other up.) She reminded me that I have been their rock and anchor (the earthly one) for awhile now and that Dad is probably quite anxious and not understanding what is happening and his rock and anchor isn't around. She suggested that it was quite important for him to hear my voice and to even pray with him. I have spoken to him once since I left and that was when he was in the hospital for his feeding tube. He can't respond but he can listen. I called Sherri and she put the phone up to his ear. I spoke to him, prayed with him and then I sang him his song...GOD WILL TAKE CARE OF YOU. Sherri said that his breathing changed when I started to sing and that he was smiling and looking around a bit afterwards.

I'm so glad I'm on my way home!

Difficult day that ended better than it started

This has been an emotional day for many of us who love and care for my Dad. The brunt of the stress fell on Sherri first thing this morning when she went to the hospital to check on Dad. When she got there she felt like he was on his way away from us. He was unresponsive and his oxygen levels were below normal. The doctor had arrived early and decided to remove the oxygen, thinking that he no longer needed it. The weight of wondering if he was dying was very heavy on her and when we talked, of course, I was torn about what to do as we are in Pennsylvania. I was ready to jump in the car and head home but reason overcame impulsiveness with the help of friends and family. Sherri and I talked about different things to do, one of which was to talk to the nurse about getting his oxygen started again. The plan was to return him to the nursing home this afternoon and we were concerned that he wasn't ready to go yet. I made phone calls from here. I spoke with the unit manager/charge nurse at the nursing home to see if they were equipped to handle things if he were moved back now. Her one concern was his o2 level. She said that if he came back and his o2 levels started dropping that they would return him to the hospital. We didn't want that. We wanted it to be resolved before he was sent back to the nursing home. Somewhere along the way, the oxygen was returned. Sherri says that he will pull it off and sometimes puts it in his mouth so that is something that they will have to watch.

My concern was that Sherri was alone and needed someone to support her. I called a close friend who is also a friend of Sherri's and asked if she could go be with Sherri. Before that, I had suggested to Sherri that she get Mom and take her to the hospital to see Dad. She hadn't seen him in a couple of days as she had not been comfortable being there alone with Dad and had asked to just wait for him back at the nursing home. Sherri was concerned that it would be difficult for her to see him like he was this morning. We discussed it and decided that Dad's need to see her probably far outweighed concern for her at this point. So Sherri picked Mom up after her lunch to take her to see Dad.

Meanwhile, here in Pennsylvania, I was having trouble deciding what to do. I called another dear friend and unloaded my breaking heart on her. She, being the prayer warrior that she is, said "let's pray". While we were talking, Rosie beeped in on my cell phone. I clicked over to tell her that I was on the phone with Kathy and would call her right back. Knowing her sister, Rosie sensed that something was wrong and began to pray for me. I just really needed to know what to do. Was there anything that I could do differently if I was there at home? Thinking that Dad might be dying, I just wanted to be there to sing him into heaven. I kept thinking of the song, "God Will Take Care of You". Kathy prayed that I would know what to do in the next 10 minutes. I told her that I wanted to be there with him if he was dying but I realized that the angels could sing him into heaven better than I could. We hung up and I called Rosie back. Again, I unloaded my breaking heart....(that means I was sobbing). What to do??? Just after we started talking, Kathy beeped in and I clicked over. She told me that she and Carmen were leaving the house to drive up to Orange Park to check on things at the hospital. Now Kathy has been there with several people as their lives were ending. She was a hospice volunteer several years ago and then cared for two family members who passed away in their home. (She's got some experience!) She was going to evaluate the situation and would call. When I got back on the line with Rosie, she told me that was my answer. I was to sit tight and relax until I heard back from Kathy.

Sherri had gone to eat lunch and then went to pick up Mom at the nursing home. When she got back Dad began to perk up...I'm not sure if he had begun to already or if it began when they got there but it was happening. Then Sherri's sister, my neice Kristen, arrived. (They have been down from Indiana on vacation. Another blessing that I had mentioned before.) Frances arrived. The friend that I had called first to be with Sherri. Next, it was Kathy and Carmen. They now had a room full of people who loved Dad and whom he also loved. Kathy called me a few times from the hospital. The first time to tell me that Dad was smiling and enjoying the interaction of the folks in the room. He was now trying to say a few words while before he had been quite unresponsive. But she also wanted me to know that she believed that he was not dying at this time and that I needed to stay put and try to enjoy my time away with my husband and family. Later, Frances also called me to tell me that things were going to be okay and I did NOT need to come home. She and her husband were both going to visit Mom and Dad later in the evening.

Sherri was finally able to call me again when things had been settled for Dad's return to the nursing home this early evening. Sherri took Mom back to the nursing home so that she could have her dinner and her sister, Kristen, who is a CNA, rode with her Grandpa in the ambulance back to the nursing home. Sherri stayed to get Dad settled in and then called me again on her way home to tell my that my two favorite nurses were on duty tonight on their wing. If you have been following this blog, you will remember Grace from the first day at the nursing home. Grace was on duty and is a precious, loving, conscientious nurse. So I am again thankful for Grace. And mercy. Mercy that God allowed the two nurses that I feel the most comfortable with to be there tonight on his first night back following this ordeal. I'm thankful for the friends we have that love Jesus and my family. I'm thankful for my family that love Jesus and me. I'm thankful for Jesus who cares for my parents much better than I ever could and He can do it even if I'm not in town to help Him!

Dad's feeding tube

A quick update. Dad had his feeding tube placed this afternoon. He came through everything just fine. Sherri is with him as I write this and I just finished speaking with her. She said he is awake and seems to be aware of what is going on. They will not feed him until tomorrow. His sugar count has been very high but the nurse said that it is partially because he is not eating and is getting sugar water in his IV. It was down after surgery but the nurse said they had probably given him insulin down in the O.R. I will add more later. Oh, Mom is doing fine -- she had lots of company today. Sherri was going to stop by the nursing home to see Mom after she leaves the hospital. Mom didn't want to go back to the hospital today. Kristen was at the hospital with Dad before surgery while Sherri was home dealing with the excess water that was working it's way into her house because of the heavy rains that are falling in Florida. Our close friend and neighbor, Frances, stopped to check on Mom on her way home from work. Mom was so glad to see her. So, all is well and everyone is pitching in to help things run as smoothly as possible. I am so thankful for that so that Sam and I are able to continue on with our vacation. For some reason, when I sit down for very long, like to write these updates, I feel like curling up in a bed somewhere and falling asleep. I did that yesterday but now we are leaving to go meet our kids to eat supper together in Charlotte.

More news about Dad's feeding tube

Sherri called me just after the doctor had come in to see Dad. It was about 5:30PM tonight. I had asked for the gastroenterologist that we have used before but he was unavailable. His associate came in. The nurse told Sherri that both doctors were really good. He said that the results of Dad's blood work showed that his potassium level was too low and his sodium was too high to be able to have anesthesia. They will have to get all of that regulated with the IV drip before placing the feeding tube. At this time they anticipate accomplishing that on Wednesday. He said that he would only remain in the hospital long enough to make sure that Dad tolerates it well. When I talked to the doctor yesterday, he indicated that it would only be a matter of 12 to 24 hours to regulate things before he would return to the nursing home. Hopefully, he will be able to return to be with Mom on Thursday.

Sherri plans to take Mom up to see Dad in the hospital tomorrow morning. Mom is understandably more confused with all of this happening. Fortunately, she is loved at the nursing home and will be well cared for and Sherri is keeping her informed of all that is going on. And, as I know more, I will keep all of you who may be interested, informed.

As I read back over my previous post, I realize that I did not make something clear. This procedure will be what keeps Dad alive and healthy for the rest of his life. There is no anticipation of it ever being removed as his swallowing capabilities no longer function. This is a "normal" and frequent result of the aging process for some people. Dad will have the food in his mouth and you can tell him to swallow until the cows come home but it just doesn't make it happen. You can see the wheels turning, trying to do it, you can even rub his throat (which works for babies) and it won't help. I am thankful that we live in a time when this sort of procedure is possible as I am not quite ready to give my Dad up yet. He still has a personality that shows through and his sense of humor is still intact.

Update on Dad

Dad was admitted to the hospital today to have a feeding tube placed and receive IV fluids. He has had increasing difficulty swallowing and choking. The swallowing issue has become so bad that Dad was rapidly becoming dehydrated and losing weight. We are actually encouraged to be having this done as we feel that this will help Dad to regain some of his mental abilities that have deteriorated because of the dehydration.

Sam and I are actually in the car traveling to South Carolina as I write this. This had all been coming to a head before we left and yesterday when I went into the nursing home I was able to talk to the doctor and get everything worked out. Sherri and I talked and the consensus (Rosie, Paul, Sherri) was that Sam and I continue with our plans to leave for our vacation today. There is nothing different that I can do that Sherri cannot. Dad is in good hands. Rosie's daughter, Kristen, who is a CNA in Indiana, is visiting in Florida right now. She and her husband arrived at the nursing home at 7:30AM to check on things and were in with Mom and Dad all morning. Sherri went to the hospital with Dad. I am moved to tears as I think about the providence of God in the timing of all this. Knowing that Kristen was there with them all morning to help out and love on her grandparents with her skills is such a comforting thing. A reminder that God has all things under control. I am reminded again of what Dad has told us several times. When he was born in the apartment above the church where his dad pastored, there was a service taking place below. His mother told him that the song being sung at the time of his birth was GOD WILL TAKE CARE OF YOU. She told him that was his birth song. One line of the song is "Be not dismayed what e're betide, God will take care of you. Beneath His wings of love abide, God will take care of you." And God certainly continues to do that for my parents!