Nuggets from the Fire

We went to see Louise for her birthday. She was happy to see us and happier to learn that is was her birthday. We had to improvise with the candle so we used a taper candle off the dining room table. She wasn’t sure what we were doing, and honestly, it was a bit unusual. However, she sang with us and blew out the candle. She seemed to know we usually have a crew with us and it must have seemed odd for there to only be 3 of us. She asked if the other kids were at home. We explained that they were all off at college and she got confused. We pulled out a picture from Thanksgiving and showed her each one. She seemed to understand, then Hannah called and Louise asked her where she was. She had already forgotten our explanation just five minutes prior.
She fed the dogs even though Ray had already done it. They would clean their plates, and she would think they hadn’t eaten and give them more. She was also confused on her medicine. She kept looking at the different compartments for the different days and asking what day it is. We said Friday and she looked to see that it was empty, but then wasn’t sure if she had taken it. Ray told her she had, that he had watched her take it but she was wondering if she should take Saturday yet. For the most part she can get through the day with Ray at her side, but there are times, like with the medicine confusion, where memory loss can be dangerous. It doesn’t seem to be getting better, leading me to believe that it may very well be the new baseline. While that is discouraging, she is still Louise. She has not lost what makes her who she is. She has the ability to converse, to joke around about her “weird world,” and she can move around the house fine. She gets adamant about things, like feeding the dogs, but she can be distracted because if you redirect her she forgets what she was doing. If you saw her you would know it was her. The fun thing about today is that every time she heard it was her birthday she was surprised. Now that is a way to have a birthday!

I went by to see Louise tonight. She and Ray were on their way to eat dinner so we talked a few minutes in the driveway. She is glad to be home. She said she remembered the dogs, but she seems like she is in a different world. I told her that her memory is not too good and she thanked me for telling her. She asked Ray why he hadn’t told her. We told her that he had…that we all had, but that she just cannot remember. She seems alarmed that she doesn’t know what she has done or that she has lost her memory. She said it is scary.
It seems to me, that she has snippets of memory…like flashes, but nothing that lasts very long. Yesterday we told her we were talking to Gail. She said she remembered her, and that she lived far away. She couldn’t remember Colorado, but she knew it was far. Today she talked to Gail on the phone but she thought she lived in Georgia. It is like she has a flash, but then it goes away. Friday is her 76th birthday. Yesterday we asked her if she knew what happened on Jan. 27th and after a few minutes of thinking about it she said, “It’s somebody’s birthday.” We told her it was hers and she was surprised. Everything is a surprise to her now. She is very cute in her expressions when you tell her something she doesn’t remember…which is just about everything. Her eyes light up and she exclaims, “Really? Is that true?”
Starting Friday she will have therapists coming to the house to work with her a few days a week for an hour or so. It will be interesting to see what they do and if any of it helps her memory at all.

Today was a big day for Louise. First, to see her regular neurologist this morning, then a team meeting at the nursing home/rehab center this afternoon. Once again, I could be a neurologist. “We don’t really know…and time will tell.” I didn’t really expect much different. He said this could be her new baseline, but then again you never know…she could still gain some back. At least that was my thought. It seems that multiple seizures, like the ones she had, can cause some permanent injury. He upped her anti-seizure medicine again, and will keep an eye on her blood levels to make sure she is not over medicated. We got some brochures for care centers that work with memory, in case we might need them later.
In the afternoon, there was a team meeting. All her therapists came and told how she was doing for them. The speech therapist said she was doing great in speaking, and swallowing. She has actually gained some ability to read a small amount and to write more legibly than before this happened! The brain is absolutely amazing! Her physical therapist said that she is physically strong. Her walking is good, though she is not as balanced when turning, she is fine on multi-level surfaces, like carpet to wood, or carpet to tile. Her risk of fall is mostly due to her quick steps and forgetting to look before she sits in a chair. The occupational therapist said she is independent on all her hygienic needs as well as dressing herself. Basically, she has reached all the goals they have set for her. They feel she has reached her new baseline, and that she will only progress in small amounts from here. This was, for me, the hardest thing to hear today.
Though she can converse, and even joke around some, memory continues to be the biggest issue. She still cannot remember even just a few hours prior to the present. By the afternoon meeting, she didn’t remember she had been to the doctor this morning. She still is amazed every time we tell her that she had seizures. In this way she is very childlike and still very dependent. Bill and I were concerned that they wanted to send her home in this condition, but they have no other goals to reach with her. She is a rehab patient and according to them, she has rehabbed as much as she can. She will have therapist who come to her a few days a week. They feel that being at home would help her memory better than being in a center. I have to agree with that much…however, I am very concerned about the unbelievable stress this will place on Ray. I remember being in this very place myself. It is exhausting and constant…like having an over active toddler. She will not be able to be left alone, even for a few minutes in a room by herself because she could wander off. At the center she wears an alarm bracelet on her wrist that sounds if she gets near a door. At home, she will not have one of those. We asked about options for sitters, or other in home care, but Ray is insistent he can handle it all himself. The decision was made that she will go home tomorrow morning.

I haven’t had the time to see Louise the past couple of days because of commitments made months ago. When I saw her this morning she was sleeping, still in her clothes from yesterday. I didn’t ask why that was, because I knew she wouldn’t know why. She brightened when she opened her eyes and gave me a big smile. She told me something is wrong and she doesn’t know where she is. When I told her the story, she was once again shocked that she has been in a “hotel” for two weeks. She seemed just as confused as the last time I saw her, only she is beginning to know she is confused, if that makes sense. Before you could tell her she was in the hospital and she would be surprised, but then go right on with whatever she was doing before. Now she is asking a lot of questions and is surprised at every answer. I told her that since her brain surgery she had been doing very well until the seizures happened. She had no idea she had brain surgery or a tumor. She seems to really be trying to take in the whole thing, but then she said, “I have so many questions, but I won’t remember the answers after you leave.” Now all this may sound hopeless, but I can still see forward progress. Her brain is trying to construct meaning. It cannot put things together, but it is trying. She is questioning and she has realized that she won’t remember what happened. That is also progress. She knows that she won’t know it tomorrow.
I told her Bill was just like this after his accident and she was shocked that he had an accident. I had to explain that to her too. That is the first indication I have seen that she doesn’t remember the long term past. I told her I saw an old friend who lived in the cabin years ago, after the tornado. She didn’t remember the tornado, but she was trying. You could see the wheels turning, just no connection for her to hang that information on. While that is concerning to me, it is also familiar, because Bill had huge lapses like that. He still doesn’t remember any of that time of his recovery. His took probably two years or more…so it is slow going…trust me on that. One day I could see forward progress, the next was two steps back. It is the steady uphill climb that you have to focus on. One day is completely different from the next, but remarkably the same. Sounds impossible, I know. Hard to describe really, unless you have lived it day in and day out. I have lived it…for years. It is hard. It is unpredictable, but I have learned some things to watch for and I am still seeing some of them with Louise. I am not a medical doctor so I cannot tell you why she is not coming back faster, or why her memory is affected, or when things will turn around, or if they will turn around. Honestly, I don’t think they could answer those questions either. I CAN tell you what I see that is good. She is trying to construct meaning. She has figured out something is wrong. She remembered today that she had a haircut yesterday. That is forward…tiny steps…but forward just the same.
One thing that is just like Bill, she wants to go home. She says it over and over when Ray comes to see her…somehow she thinks if she could just get there things would be normal. Bill was just like that. When I came to see him, he thought of home, because to him I was his home. However, when he came home he didn’t remember a lot. Some things, but not everything like he had hoped…like I had hoped. It wasn’t the magic fix. I had to re-teach him mostly everything about our home…where the bedroom was, how to use the shower, where his clothes were in the closet. Even so, I do think that some familiar is better than waking up to a strange place every day. I think in a home environment chances are higher that recovery will come faster than laying in a bed with a bed alarm all day. There will be a meeting on Tuesday to review Louise’s progress. Decisions as to her treatment and care will be made. Please pray for clarity and for just the right options that fit this circumstance. I know there are many out there from home health, to sitters, to assisted living. We want to honor her wishes without putting her in danger, or having Ray overly burdened with the physical demands of her care. We want her to recover as much as is possible. We want the right place that is conducive to that kind of healing. Thanks for your prayers in this matter.

Went to see Louise today. She was happy to have company. Her roommate is a sweet lady with congestive heart failure. She seems in good condition, she’s in a wheelchair but very coherent, and she is very kind to Louise. She worries about Louise and tries to keep a watch on her. She let me know right away when Louise stood up that it was not allowed, but did so in a gentle way. I think they get along fairly well.
The confusion continues, though she seems more able to chat each day. Today she got our names right when asked directly. That is something she could not do before last week. I wondered if she could name other things if asked directly so we did a little test. We held up a fork and asked her what it is and she said, “Chair.” So much for my theory. We gave her the word ‘fork’ and then held up a knife. She said, “Spoon.” Though it was not the right answer, it was associated with the fork. It is good that she can do some associations. She was not capable of that just a few days ago…in fact a few days ago she wasn’t even talking. I have to remember that when it seems like things are moving slowly. She has come a long way in a few days.
Her new favorite adjective is weird. She knows what it means and it describes how she is feeling about everything. When you ask her how she is she will say weird. When she got up to look out the window at a bird feeder, I asked her to sit back in bed. She looked at the bed and said, “Who’s bed is that?” It was less than a minute since she got out of it. So she still has a long way to go with the confusion and memory issues, but therapy will work on that with her. She will probably see her own neurologist next week. There is a coordinator that arranges all appointments for her, which takes a load off Ray. He doesn’t have to do all the phone work and scheduling, he just has to take her. (Actually he doesn’t HAVE to, they would do it, but he wants to) Brain recovery is a hard thing to predict, and to watch. Pray for quick forward progress.

I didn’t get a chance to go see Louise today, but I talked to her on the phone. I asked her if she had been to physical therapy today and she said, “I don’t know. I think I have been sleeping all day.” I talked to Ray and he said she had been to therapy. He also said they have put her in a wheelchair with an alarm on it. (I am telling you the brilliant person who developed bed and wheelchair alarms should be sainted.) I guess she was too active for them to feel comfortable with her walking a lot. The danger of falling, if she should have another seizure, is too great. As of now, there still have not been any more events. She is settling in and trying to get into a routine. She just doesn’t know it yet. The familiarity should help her to make some progress. She will see her regular neurologist next week, as he is still out of town now. She told me today that everything is weird. I asked her if it felt like a dream world and she said, “Yes, it’s kind of foggy all the time and weird, really weird.” Pretty good description for someone so confused…a good sign.

Louise was moved today. She is in a nursing home with a rehab unit in hopes that she will recover to where she was before the events of last weekend. At this point, she is on the move. Making us a bit nervous about the possibility she could fall. However, after laying in a bed for a week I think I would want to move too, so I cannot say I blame her. She doesn’t want to sit or get in the bed, just walk around. She is checking out the new center. When I talked with her on the phone tonight she said, “There are all kinds of people here from good ones to bad ones.” I took her to mean the ability levels of the other residents are varied. She continues to be confused about things, but I see some improvement each day so I think, that over time, this confusion may get better as the doctors hope. Her therapy schedule will start soon I am sure. That will give her a regular rotation of things to do and that should help her with getting settled. The progress she makes will determine how long she will stay. Our hope is that it is not long, but we really do not know. All we know is that “time will tell.” Ah…my favorite phrase once again.

Tomorrow is a big day. They plan to release Louise to the nursing home for rehab. It is just in the nick of time too. She decided to get up and go today. She wanted to go outside, walk around the hospital, anything but get in the bed. She was adamant. As far as we can tell, she hasn’t had any more seizures. The medicine appears to be working. She is eating on her own, so we begin the recovery road. She has a couple of issues you can be in prayer about. One is her memory. She can converse and respond when you are talking to her, but in five minutes she may not remember it. She seems to be stuck in the continuous present. She still doesn’t seem to know she is in a hospital and every time you tell her she acts surprised. I remember this stage from Bill’s recovery. It is a stage they must go through, we hope it will go quickly and there will be no residual longer term affects.
The next area of concern is the agitated stage. She seems to have started that today. Always moving and refusing, to the point of belligerence, to get in the bed. There is a tendency to be angry and not exactly know why….just an overall frustration that affects her attitude and actions. I also remember this stage in Bill’s recovery. Only he was much bigger and stronger that Louise. He would walk in circles in his room, he tried to run away from the hospital, he regularly threw things…at me. He turned over tables, threw wheelchairs at nurses, and put doctors up against the wall. Not a fun stage. They want normal and they want home…but it is not possible for them, this causes great frustration and anger is the outlet. My prayer is that this will pass quickly and that she will be willing to work with the medical professionals to get better instead of fighting them.
I would also ask for prayer for Ray in this. I can tell you from personal experience this is by far the hardest part. You have to say NO a lot when they don’t want you to. You become the bad guy and you have to stand firm for their safety even though they cannot understand. It is similar to being a parent in many ways. Only they can say and do things that are hurtful in their frustration. It is very difficult not to take this personally. It hurts, because you are doing everything humanly possible to care for them and they don’t see your sacrifice. Not only do they not see it, they come against you as if you are the enemy. Yet in another minute, they are childlike in their need and dependence on you…a very hard line to walk. The thing is that they do not remember such actions…and that is what the caretakers have to remember as well. It is not personal…it only feels like it. Bill remembers nothing of his outbursts from those months. I remember every one of them. Hard to think about even now 24 years later.
Pray that Ray will have the courage and strength to say no when needed. That he will have the knowledge that it is not a personal thing but a stage. And that he will be able to take time away for a few hours if needed to get a breath of fresh air. Pray that Louise would recover and move through all the stages quickly. That she would work with her team to get better. That she would not remain at the nursing home but progress enough to get to return home. That there would be no long term effects of this time. That God would draw us all closer to himself.

Last night, while Louise was feeding herself her first solid food, we got a chance to talk to a different neurologist…the weekend one. He came to check on her at the request of the doctor who has been treating her. In the morning, she had been chatty and, with Ray’s help, called many family members. She was conversing, meaning responding back to questions we asked her. This was great progress and we were all thrilled to hear her voice after a week of mostly silence. However, about mid-morning Ray said she fell back into her deep sleep. When she woke 45 minutes later, she had no memory of any phone calls or visitors from the day. By the time we arrived in the afternoon, she was back conversing again. However, her short-term memory was noticeably affected. She also seems slow to process. During our conversation with the doctor, she didn’t seem to be following our comments, or to realize we were talking about her. When we told her she was in the hospital she said, “Really? I am?!” even though we have told her numerous times before. She doesn’t seem able to retain information.
According to the neurologist, that is normal for this type of seizure activity. It seems that just before an event, as well as just after all memory is wiped out for a time. He said the thing to watch for is the frequency of the events, and the severity…both of which are decreasing. Rather than just blast her up to a huge dose of meds, they are increasing it in small increments. That way they can get just what she needs to stop the activity and no more. He called them complex partial seizures and he said they accompany her particular type of brain tumor. Any time there is brain trauma, could be a tumor, or brain surgery, or radiation, there is a risk of seizures 6 months to a year from the event. Louise had all three of these traumas. Her first seizure was in June, which was just over one year from her surgery. She was put on anti-seizure meds and has been seizure free until last week. Now it appears that they are coming one right after the other for some reason. This neurologist did not seem stumped by this…in fact he made it sound as if this is a fairly normal occurrence for someone with Louise’s history. He said that once the medication was regulated that she should be able to regain function as it was before this happened. It may be slow in coming, but her brain is not injured at this time….just shorting out repeatedly. He also said that the drug they are using is the drug of choice because it does not interfere with liver function, or other medications she may be taking. I asked about drowsiness from the drug and he said that it is only one of a long list of possible side effects and that most people do not have significant sleepiness from it. He feels her sleep is due to the seizures, not the meds. I felt much better after our talk with him. It didn’t seem so “unknown” as I had thought based on the other doctor.
Today Ray says that Louise is chatty again. She has had several visitors on this lovely Sunday afternoon. She is still enjoying her solid food and insisting on feeding herself. She does a good job. Last night she said she wasn’t hungry, but once I gave her a few bites she said it tasted “so good.” I figure after a week of not eating it would probably taste good…even hospital food. We couldn’t stop her then…it took her over an hour to feed herself but she ate every bite…not a crumb left. The return of appetite is a good sign. She may not realize it but she is hungry. This reduced sensation of hunger happened after surgery too, so I think we can just get her started when she doesn’t think she is hungry and then she will realize it. Overall, the news is good I think. At least we are on the right track. The time to recover what function she had is unclear, but the fact that they think she can is a weight off our minds.

Why is it that health issues always make me feel as if I am on a roller coaster? I go up hills, only to be plummeted down, screaming, trying to hold on to my lunch. Then up I climb before, I am slung around at breakneck speeds holding on for dear life. Why would anyone WANT to take a ride like this? It doesn’t matter if it is my own health issue, or the problem of any one around me…I don’t like the health roller coaster ride. It is exhausting trying to hold on when the unexpected is right around the corner.
My last note told about Louise’s remarkable turn around. She was eating, talking and seemed to be coming back very quickly. We were thrilled and began discussing where she would go after they released her…which was supposed to happen today. Then, true to the roller coaster ride we are on, she had a set back. It was yesterday afternoon. (Of course, Friday after 5…because our roller coasters always seem to run on the weekends) She was sitting on a chair, then standing trying to leave, then suddenly confused, followed by non-responsive. Bill put her in the bed and she curled up, eyes closed, into a semi-fetal position. No talking. No communication. They couldn’t even get her to open her eyes. It seems that we were starting over again…right where we were last Sunday. The doctor came in and said they would up her anti-seizure meds and evaluate her once they had kicked in. The goal was to stabilize her over the weekend and pull in the team on Monday to figure out what next. Since she was in a deep sleep and heavily medicated we all went home to get some much needed sleep. This morning, Bill’s phone rang early. He answered and it was his mom. Ray had given her the phone to talk to Bill. She was saying how she felt weird and that something was wrong with her. She told him that she was better now, but she cannot understand what is going on. It was the most alert and coherent she has been since all of this started. It’s like a miracle happened while she slept and she was back with us again. And so, today, we are back on the uphill climb of the roller coaster. We are guardedly optimistic.
It seems that the “neurological events” she is having short out her brain, which shuts down her function. The docs say that it does not damage the brain itself. The only danger to her brain is if she should fall and hit her head while she is non-functional. These events are unlike seizures in that they do not spread over the whole brain, but are localized in one spot. Therefore, if they can stop the pulses from happening her function returns quickly. It is the continuous pulses that are the problem…not brain damage. All tests show the brain itself is still in good condition, and the tumor is not growing. The cause for the impulses isn’t understood, but the stopping of them is the treatment. If the dose of the medicine can be regulated the doc says she should be able to regain the function she had before this happened. She is weak, so it is likely to take a while, but they plan to release her to a rehab/nursing facility so that she can gain function back. I promise you that if she is aware, she will not like this one bit. It will motivate her to do the work in order to be able to go home. Home is her goal and when she is with us she tells us so. Please continue to pray for Louise, the doctors and us.