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.
