Friday 18 March:
The phone rings at 2:50 AM.
My first thought is, “Who is the world would be calling at this hour?” I really didn’t know what “hour” I was talking about since i had not looked at the clock yet. Gary answers the phone and comes back with phone in hand, turning on a light and says, “It’s Mary from the Crete Hospital.”
With those words, I was instantly awake. Since my dad’s health problems have begun, I have always wondered what it would be like to get one of “these” calls. Now I know!
So how did my dad end up in ER and I getting the phone call? When I got the call, the long-term care facility thought he had aspirated on something and the ambulance did take him from there to the hospital. They called me because they could not get my mom to answer the phone. I am pretty sure that my brother turns off his phone at night – so here I am with a land line phone that they could still get through on! They needed permission to treat him. It was obvious that he was not able to make the call himself or I would not be awake at 2:50 AM! So gave them permission, they told me that he seemed to look ok, but would need to do blood work. I was the one that had to tell them in the changes that had been made if he coded. What a horrible thing to be discussing at 3 AM, but at least I knew the answers to the questions.
I tried to call mom again just to let her know what was going on. She did not answer the phone. Her hearing is not that great. She takes her hearing aids out when she goes to sleep and if she was in a deep sleep, she would not wake up.
I call my brother and leave a message on his cell phone. I know that his phone is most likely off, but he will get it when he wakes up.
I go back to bed – but don’t really sleep much.
6:30 AM – Phone rings again. This time it is my cell phone and the caller ID lets me know that it is my brother. He has already called the hospital and found out that dad has pneumonia and running a fever of 102 when he was admitted this morning. The temp is now down to 99 – nice improvement. My brother is scheduled to leave town on Monday and be out-of-town all week. Still have not been able to get mom on the phone. I know that her alarm goes off @6 AM. My brother will be driving over there some time to check on her and let her know what is going on.
7:30 AM – Finally got mom on the phone. She has not slept well all week, except for last night! Anyway she now knows all that has been going on with my dad. She said she saw him yesterday, they played bingo and she didn’t notice anything out of the ordinary. She was thankful that I called and said she would try to get to over to see him sometime today. However she did also list about 5 other things she wanted to get done today as well! Busy lady!
I also called my brother to let him know that mom was OK and that she was up to date with all that had happened in the early morning hours. I discussed some initial plans that Gary and I talked about (at 3 AM) and possibly coming down on Sunday after a wedding. He didn’t say not to come which tells me a lot. There will be much to think through as the day progresses. So far only one of my children knows and I caught him before he left for school this morning!
Mid-Morning Update: I called the hospital to check on my dad’s progress. He is still very sleepy and does seem to be responding to the nurses. He has 2 IV antibiotics + oxygen. His breathing is labored and congested. He is being turned every 2 hours. I was told that it could take up to 48 hours for the IV antibiotics to take effect and before we see any changes in his condition. I guess this means that we are officially watching the status and checking regularly for any indication as to which way things may be heading. In the meantime, the laundry is being done, suitcases will begin to be packed and plans with options are being laid.
Late Afternoon Update – Just got off the phone with my mom (5:15 PM). Dad’s issue is a swallowing problem. If things are not swallowed properly, there is an aspiration that takes place and things that should not be in the lungs are in the lungs, causing a pneumonia like condition. The suggestions given to my mom – a feeding tube or Hospice help with feeding. Mom is advocating for the Hospice nurse for feeding at the long term care facility. I am with my mom on this one. Dad is constantly trying to take the oxygen tube off, I can’t imagine what he would be like with a feeding tube!
He was also evaluated for PT and is no longer a good candidate for PT. His muscles have atrophied to a point where he can’t do therapy on his own and it would be very involved to continue working his muscles. Would it be worth the effort, I think so, but others don’t. They say that he is “too far gone.”
All of this is expected with the disease/condition that he has. It is not easy, but expected none the less. We will be going down to see dad after the wedding on Saturday. At least 5 of 7 will be going. The two oldest have to work. We will be working on how to get them down as soon as we can. Time is getting short and now it is time to spend as much time with him as we can. So it looks like the weekends that I am not training a team, I will be in Nebraska. Pray for endurance!
All the kids have been told about what is going on and each is processing it in his/her own way. It is interesting to watch them process this. Death has not been so close and personal to them as this one will be. Some are asking so many questions, many of which I do not have answers to. Some have not asked any questions. Pray for them as they process the events of the day and as we walk through this next phase.
Saturday 19 March:
Preparing to leave. First to Iowa for a wedding then to Nebraska to see my parents. Mom seems to be doing fine. My brother and I are concerned about her as well. She does not seem to be eating as well as she could be. There are many things to deal with while we are there for less than 24 hours. Since the 2 oldest can’t make the trip this weekend, we are also planning on getting them down there as soon as possible. Trying to get as many pictures of my dad and the kids as possible while we can. Hopefully Garrett will be able to keep up with the editing! Still on the edge with regard to my health. Pray that I will be good enough to be able to see my dad.
It was a wonderful day with friends and sharing in the joy of Anna and Aaron’s wedding. It was good to re-connect with friends who have become like family before heading down into the onslaught of the medical concerns and big decisions looming in Nebraska.
Sunday 20 March:
Talking with my brother was very interesting this morning. Both of us were coughing at the ends of our sentences. God does have a sense of humor, but at least my cold won’t keep me from seeing my dad! Dad is off the oxygen and will have his final rounds of IV antibiotics. The goal is to release him back to the long term care facility on Monday! However we have some very hard decisions to make.
Dad has what is called Swallowing pneumonia – which means that the disease has progressed to the point where swallowing anything, including his saliva, can cause him to aspirate things into his lungs, leading to pneumonia. This could become a recurring problem and at some point antibiotics will stop working. My dad is proving to be stubborn on some issues and refuses to eat the diet that would help him – so we are forced to make decisions that don’t seem to make sense – at least on some levels.
My dad is mentally alert; physically spent. The muscles in his legs have atrophied to the point where they can no longer support his weight and actually don’t work like they should due to lack of use over the past year or so. Dad asks many good questions and when we give him the answers, he asks my brother if his guns are locked up! He is tired of fighting this disease and at this point the disease is winning. When I explaining to dad my he needed a different diet and referred to his illness as a disease, he quickly told me he didn’t have a disease but a condition. He loved having the kids around and watching them wrestle; play and read. I actually saw a smile on his face!
Dad is to be released from the hospital on Monday. We need to decide what kind of care that he will receive once he is back there. So many questions – not many good answers. As Mom, my brother and I talked with the nurse at the long term care facility, it became very clear that on some levels, he needs hospice care, but not on all levels. Finally we decided to go with the hospice care for several reasons – he will get someone to come in and feed him, with the hopes that it will reduce the choking and aspiration issues. These will not go away, but if someone is there, watching him, it should reduce them. It was also decided that if he get pneumonia again, we will treat it with oral antibiotics but he will not be transported to the hospital. If they nurses find him in a condition where his heart has stopped and they didn’t see what happened, they will not resuscitate.
It was a hard day.
Monday 21 March:
Dad is to be released between 1 and 1:30 this afternoon. Mom and I will go to the long term care facility and get the paper work done prior to him coming back. I have spent the morning looking over all of their legal power of attorney, health directives, etc. They have thought things through, but finding all of the paper work has been a challenge!
Gary and the kids went home yesterday. I will get home as soon as I can get a rental car. Who would have thought that in the small city of Lincoln, I would have trouble getting a rental car! I was going to come home today – but it looks like the earliest I can get a rental car is Wed. God is delaying my return for a reason! My brother is in Maryland for the week at a training. He was reluctant to go until he knew I would be staying – at least through today. It will be a hard day for my mother – and for me!
Just checked for earlier car rentals – Unless I am willing to pay really high prices – I am here until late Wed. Will be back in Minnesota – late Wed or Early Thursday! Guess there is a reason I am here until there. Pray that I will be looking for what God has for me here rather than wishing to be back in MN! I am very thankful for the washer and dryer at my mom’s house. This is one of the few times I didn’t pack any extra clothes. Mom is excited to have me around for a bit longer!
Dad is back at the Long term care facility and is pretty fragile emotionally. Physically he looks the best that I have seen in a very long time. However it took some time to determine the cause of his emotional state. Apparently a nurse at the hospital said something that dad interpreted at meaning, “it doesn’t really matter what we do, since you are going to die soon.” After all that dad has been through, this would have put me over the edge as well. Because we have moved him into hospice care, he has a new nurse that has an excellent bedside manner and she has gotten dad to try some things that he has previously been strongly opposed to.
While spending time with dad, my aunt and cousin stopped by. My uncle has been at this same facility the whole time and he took a downward turn over the weekend. He is not expected to make it through the night. This will be very hard on dad – they spent a good deal of time together.