So any post from here on out is going to be difficult. I'm not sure how to gather my thoughts because everything is so fresh. But I know there may be some family that would still like to know the details we have.
Last Wednesday I got a call from the nursing home that my dad's behaviors have changed again. He was much more subdued and was unsteady since Monday. Then he woke up on Wednesday and couldn't get out of bed or feed himself. Just the day before, he was walking on his own. Nobody could quite put their finger on what was going on, but they just wanted us to know something was going on, and that they were scheduling him for a CT scan. We left work to go see what was going on, hoping we could be there for the CT scan at the nearby hospital. I know these things are supposed to happen at the end of the disease, but I didn't think he was there yet. And I didn't realize it could come on in a matter of days. This also happened to be my dad's birthday. He is now 67.
I was afraid what we would see when we got to the nursing home. His normal routine is to spot us as we're walking in, hop out of his recliner with a big beaming smile, and say he was hoping we'd stop by today and he was just dying to shoot pool. This day he was sitting in a wheel chair because of his unsteadiness. He saw us and it took a couple seconds, but a slow smile came to his face. But that was it. We saw he had a pile of cards in his lap that he had gotten from family and many volunteers from the veterans home. We sat with him and tried to get him to look at the cards, but he would just hold them and stare. He was very flat and could really only respond with one word answers.
We found out since he was not scheduled for an emergency CT scan, he had to be scheduled as an appointment, and we weren't sure when that would happen. The doctor was on site this day so he examined him with us present to ask questions. We noticed while sitting with him for a little while that he did not look well. He kept taking off his glasses and rubbing his eyes, which were goopy and he had big dark circles around his eyes. He also seemed very wheezy, which got worse as he tried to eat one of the cookies we brought him. The doctor put him on some antibiotics, a steroid, and ordered a chest x-ray to check for reoccurring pneumonia, along with the CT scan already on order. Before we left we found out when the tests were scheduled, and the CT scan was moved up to Thursday at 4:30. I left feeling maybe he's just sick with some sort of illness and the antibiotics will kick in and he'll go back to the way he was.
I got a call around 7 on Thursday from the veterans home informing me that he had been admitted to the hospital after the CT scan. They found a brain bleed. She gave me the hospital number so I could call and find out more. I was late for a prayer service we were attending, but it seemed like the most fitting place to be, so I went anyway and passed the message on to my sister to call the hospital. We weren't sure if he was having surgery, if we should rush out to Sandusky that night, or how dire of a condition he was in. After several phone calls with the hospital staff we found out he was stable and comfortable and that the neurosurgeon would talk to us in the morning about his options. So we stayed home and waited until morning.
I got the call in the morning and the neurosurgeon wanted to know if I wanted him to operate on my dad. There were 2 massive subdural brain bleeds on both sides of his brain. He said he couldn't believe the size of them, and that my dad was even awake and responding to him. I immediately thought, well that's just the "Sabol strong-will gene" at work. He said it's a tough decision, a rough surgery considering my dad's current state, but he said he would do whatever we wanted him to help. I of course could not answer this, so I asked if we could come meet with him. So he got us in for an afternoon appointment. I still didn't think anything was going to help me feel comfortable about deciding something like this.
My sister, my husband and I, along with my aunt and uncle, met with Dr. Braun. He showed us the images of the brain. He showed us the first CT scan that was taken the day of my dad's fall 6 weeks ago. It was clear, with no signs of a bleed. But it was sickening to see the large holes in the brain caused by the FTD. The next image, that was taken the day before, looked better to me because the large holes were much smaller. Until the doctor explained the blood surrounding the brain is putting pressure on the brain, closing off those holes. Not a good thing. The bleeds required surgery, and again he wanted to know what we wanted to do. So we sat down with him and had a long discussion.
The brain bleeds are due to the fall he had 6 weeks ago, but he also believes there must have been several falls that we did not know about. He may have fallen and not said anything, or bumped his head on the wall. Reading up a little on these brain bleeds, I found that people with dementia are more prone to them because the shrinking brain creates more room for the blood to pool. Basically the bleeds are speeding up the dementia process, putting him in the end stages now.
Our options were to operate with a risky surgery that the doctor described as "torture". He would need to remove several portions of the skull. He would need drains from his head that may or may not become infected. He would likely be on a ventilator until (if) he recovered, and it may not work. If the surgery wasn't successful, or the bleeds came back which was a possibility, he would require more surgery. It would be a long road to get back on his feet, but he might never get there. He said that he would not be able to come back the way that he was, that patients are expected to lose several IQ points, and an already demented brain would be worse. And if he did get there, the disease may have already progressed to where he'd be going through the same symptoms again and this time there was no turning back. These are all stages that dementia patients go through, if they live long enough to get to them.
The other option was to do nothing, and let him go comfortably. I will admit it was still hard to decide. Because we are fighters. We never give up. I know I don't, and I got that from him. But at the same time I have to think of what he would have wanted...20 years ago when he was ok. I don't believe he would want to live like this. My sister and I often talk about how horrified dad would be if he "knew" he was exhibiting some of the behaviors he has, if he knew he was living in a nursing home where all the other patients were 20+ years older, now sitting in a wheel chair unable to stand or go to the bathroom on his own. There's no way he would want to prolong this in an even worse state.
The doctor was very candid and honest with us. He admitted that if he had been taken to a major hospital, they would have already done the surgery last night. Big name hospitals that are all about "cases" and don't worry so much about what comes next with a person or their family. And when asked what he would do if it were his family, he said there's no way he would do this surgery on them. If it was someone that was otherwise healthy and didn't have a demented brain, then yes, that person could recover and live a normal life. But not the state that my dad is in. He felt it was borderline unethical. He said he felt like my dad had been tortured enough with this disease and would he really want to prolong it when there is something better waiting for him in his future? But it was still our decision. He said we had a day or so before he would need to proceed with the operation.
Even though the decision seemed obvious, I was still glad to hear everyone else felt the same way. I'm always looking for signs and answers, and my aunt said something that made me realize we would be doing the right thing by accepting the doctors advice to leave him be. She said she felt like my dad was sent to this hospital for a reason, and God brought this doctor to us. In the medical field she has dealt with many doctors, and you don't find very many who would be this honest and candid with us. And that maybe things are happening according to God's plan. He gave us time after the initial horrific fall that nearly took his life. He gave us time in the hospital to decide what is best, they didn't need to rush him to emergency surgery before we had a time to think things through. And after talking to my mom later, she said all she could do the night before was pray. Pray that we would have an answer and know what to do.
So we are leaving him be and will keep him as comfortable as possible. Hospice will be taking care of him back in his own room at the Veterans Home where he is most familiar and comfortable with. It may be days, or it may be weeks. Only God has the answers.
Saturday, October 15, 2016
Wednesday, August 31, 2016
A Big Scare...
It's been awhile since we've been able to get in an update. But one is definitely needed now. We went for a visit and my dad's quarterly assessment on Wednesday. He wasn't quite himself. Very hard to re-direct. And even though he was so happy to see us and wanted to "kick our butts" in pool, we never actually played. He sat at his table and kept telling us he was going to get up and take his shot. But he never actually did. He was off, and slower, and he had a bad cough. I thought maybe he was coming down with something and just wasn't feeling well. We took him back and went to his meeting.
Not much new to report, just the overall general decline. But he's still pretty active and conversational with the staff and other residents. He's big into counting things, he likes looking out the window and counting the cars in the parking lot. Or commenting and reading aloud everything he sees. There will be some normal conversation mixed in. He'll talk about the past like it was yesterday. We even pulled up a photo of his house when he was a boy on google maps, and he told us all about it, including the address. Then he want back to commenting on the "medium sized yellow flag" on the wall (not only does he read things, he'll tell you the shape and size too!).
We left a little worried about him being off, but hoped he'd perk up the next visit. What happened the next day was completely unexpected, and I know it's something we'll never forget. I got a call at work on Thursday saying my dad had a fall. I remember thinking that's weird. Dad is very stable and it's unlike him to be unsteady on his feet. He's one that actually helps out with the other residents because he is strong and able. Never having received a call like this in the past, I figured it was just part of their procedure and they were required to report this to me some time after the fact. I assumed it had happened earlier in the day and they were getting around to the phone call now. But then she said they were sending him to the ER, and the more she talked I realized he was still on the ground. And he was not conscious. I was trying to get a sense of should we take off work and rush there now? I even remember asking her "I'm over an hour away, what should I do?" I felt like I was trying to think in slow motion. I was caught off guard, and I couldn't form a coherent question to get the information I needed to know. The last thing she said before hanging up was "I can't tell you what to do, but it looks pretty bad."
I called my sister who was even further away than I was and we decided we would meet up and head there together. In the meantime, the nurse called back and said they had gotten him in the ambulance and he had regained consciousness and was starting to respond. We at least got to spend the drive feeling a little better about his condition. I couldn't help worrying what this fall would do to his brain. Would he be worse, much much faster? Would he turn mean again?
When we got to the ER and took one look at him, it was heart-wrenching. He looked like he got beat up. His eye was purple and swollen shut. There were cuts on his face and one side of his face was so swollen, his face was completely misshapen. He was lying on his bed in a quiet room by himself. Drumming his fingers on his (oversized!) stomach to some kind of made up beat. I knew immediately it was a self-soothing mechanism and he was keeping himself calm. He really didn't stop the entire time we were there. But he did seem more at ease once he saw us and we put the T.V. on for him. He thanked us for coming, and said he was glad we could come out (same as he would say when we come in for a visit). And anytime we talked to a staff member and asked a question he would thank us for being there and thank us for asking. It felt like he was a child, and he really didn't understand what was going on. The CAT Scan came back normal, but he had an orbital blow out fracture under his eye, and the sinus cavity was filled with blood. They said to make sure he didn't blow his nose or anything, which would be hard because he still seemed to be coming down with something and he had a horrible cough. Within 4 hours he was being sent back to the nursing home.
We met him back at the nursing home and when we saw some of the nurses come up to us, it really hit me how serious this was. They were really shaken. One nurse said she didn't think he'd be back. When she heard the fall from a distance, and then saw what happened, she thought he was gone. She said he was walking out of the dining room with his magazines and then he had a bad coughing spell. He lost his balance, fell and crushed his face into the wall, and then hit the ground. From a distance she said it sounded like someone threw a coconut against the wall. And then he was unconscious.
Once we saw he was settled in a recliner and had eaten some lunch, we headed home. He seemed more confused than usual, but he had been through a lot and he needed rest. We left feeling very thankful, considering how things could have turned out. We're also thankful that the staff is just as concerned about him as we are.
But then Thursday evening around 10:00 I got a call that my dad now had a temperature of 102 and it wasn't responding to meds. They wanted my consent to send him back to the ER. Of course I agreed, and then I had to wait. All I could think was they must have missed something, and some infection was spreading now. I called the ER and left a message for them to call with an update as soon as they could. They called back at 12:30 and said he has pneumonia. They were running several courses of IV antibiotics and they would be sending him back in a couple hours when they were done. I could picture him, how tired and exhausted he must be by this point, and how he'd be dragged back in the middle of the night. I asked how he was, if he seemed anxious about being there. She said no, actually he's just drumming his fingers on his belly and he seems very calm. Again made me think of him as a small child being alone, and I felt terrible we couldn't be there.
Over the past couple days he seems to be doing much better. No more fever, the cough is getting better, and his face looks much better. Still very black and blue, but the swelling is much better. He has a face shape again. I saw him yesterday and I should be relieved at how well he looks considering everything he's been through. But I can't help but think how this is going to escalate things? He is much more subdued, and seems more confused than I've seen. He's been on a lot of different medications, he is sick, and had a horrible trauma to the face/head. So it is understandable. I just hope he can bounce back a little from this.
Not much new to report, just the overall general decline. But he's still pretty active and conversational with the staff and other residents. He's big into counting things, he likes looking out the window and counting the cars in the parking lot. Or commenting and reading aloud everything he sees. There will be some normal conversation mixed in. He'll talk about the past like it was yesterday. We even pulled up a photo of his house when he was a boy on google maps, and he told us all about it, including the address. Then he want back to commenting on the "medium sized yellow flag" on the wall (not only does he read things, he'll tell you the shape and size too!).
We left a little worried about him being off, but hoped he'd perk up the next visit. What happened the next day was completely unexpected, and I know it's something we'll never forget. I got a call at work on Thursday saying my dad had a fall. I remember thinking that's weird. Dad is very stable and it's unlike him to be unsteady on his feet. He's one that actually helps out with the other residents because he is strong and able. Never having received a call like this in the past, I figured it was just part of their procedure and they were required to report this to me some time after the fact. I assumed it had happened earlier in the day and they were getting around to the phone call now. But then she said they were sending him to the ER, and the more she talked I realized he was still on the ground. And he was not conscious. I was trying to get a sense of should we take off work and rush there now? I even remember asking her "I'm over an hour away, what should I do?" I felt like I was trying to think in slow motion. I was caught off guard, and I couldn't form a coherent question to get the information I needed to know. The last thing she said before hanging up was "I can't tell you what to do, but it looks pretty bad."
I called my sister who was even further away than I was and we decided we would meet up and head there together. In the meantime, the nurse called back and said they had gotten him in the ambulance and he had regained consciousness and was starting to respond. We at least got to spend the drive feeling a little better about his condition. I couldn't help worrying what this fall would do to his brain. Would he be worse, much much faster? Would he turn mean again?
When we got to the ER and took one look at him, it was heart-wrenching. He looked like he got beat up. His eye was purple and swollen shut. There were cuts on his face and one side of his face was so swollen, his face was completely misshapen. He was lying on his bed in a quiet room by himself. Drumming his fingers on his (oversized!) stomach to some kind of made up beat. I knew immediately it was a self-soothing mechanism and he was keeping himself calm. He really didn't stop the entire time we were there. But he did seem more at ease once he saw us and we put the T.V. on for him. He thanked us for coming, and said he was glad we could come out (same as he would say when we come in for a visit). And anytime we talked to a staff member and asked a question he would thank us for being there and thank us for asking. It felt like he was a child, and he really didn't understand what was going on. The CAT Scan came back normal, but he had an orbital blow out fracture under his eye, and the sinus cavity was filled with blood. They said to make sure he didn't blow his nose or anything, which would be hard because he still seemed to be coming down with something and he had a horrible cough. Within 4 hours he was being sent back to the nursing home.
We met him back at the nursing home and when we saw some of the nurses come up to us, it really hit me how serious this was. They were really shaken. One nurse said she didn't think he'd be back. When she heard the fall from a distance, and then saw what happened, she thought he was gone. She said he was walking out of the dining room with his magazines and then he had a bad coughing spell. He lost his balance, fell and crushed his face into the wall, and then hit the ground. From a distance she said it sounded like someone threw a coconut against the wall. And then he was unconscious.
Once we saw he was settled in a recliner and had eaten some lunch, we headed home. He seemed more confused than usual, but he had been through a lot and he needed rest. We left feeling very thankful, considering how things could have turned out. We're also thankful that the staff is just as concerned about him as we are.
But then Thursday evening around 10:00 I got a call that my dad now had a temperature of 102 and it wasn't responding to meds. They wanted my consent to send him back to the ER. Of course I agreed, and then I had to wait. All I could think was they must have missed something, and some infection was spreading now. I called the ER and left a message for them to call with an update as soon as they could. They called back at 12:30 and said he has pneumonia. They were running several courses of IV antibiotics and they would be sending him back in a couple hours when they were done. I could picture him, how tired and exhausted he must be by this point, and how he'd be dragged back in the middle of the night. I asked how he was, if he seemed anxious about being there. She said no, actually he's just drumming his fingers on his belly and he seems very calm. Again made me think of him as a small child being alone, and I felt terrible we couldn't be there.
Over the past couple days he seems to be doing much better. No more fever, the cough is getting better, and his face looks much better. Still very black and blue, but the swelling is much better. He has a face shape again. I saw him yesterday and I should be relieved at how well he looks considering everything he's been through. But I can't help but think how this is going to escalate things? He is much more subdued, and seems more confused than I've seen. He's been on a lot of different medications, he is sick, and had a horrible trauma to the face/head. So it is understandable. I just hope he can bounce back a little from this.
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