It's Friday; I can't believe it's been a week since I came home. It feels like the longest week of my life. Mom is resting a bit, though she continues to awaken with the slightest sound, touch, or movement around her. She is still on the 4th floor at UCONN Hospital, in a private room again, with one-to-one supervision at all times. After putting her restraint vest back on after a half-day with it off on Wednesday, it is off again as off 11:30am today. We are hoping that she will continue to be okay without it.
Mom has had lots of visitors this week, including family, friends, a co-worker, and her home health aide, Beth O. She has been so talkative, in fact, she has almost lost her voice entirely and is quite hoarse. Although her speech is still very confusing and very few phrases make much sense, we are becoming somewhat attuned and are getting better at connecting words and thoughts as they come.
This morning we had a family meeting with Mama Marian's doctors, social worker, case manager, and also had a brief visit from the psychiatric team. There are a couple of options for discharge, which will likely not take place until Tuesday at the earliest. Right now, we really would like to bring her home. Because she needs so much supervision and has been restrained so often, an inpatient hospice like Branford would have to keep her sedated. With all of the disastrous attempts at sedating her in the past few weeks, we are VERY wary of this and would also like to have some more time with Mom as Mom if it is possible.
Depending on how things play out this weekend, we would like to bring Mom home with Hospice and some other home health aides in place. The hospital is arranging for a medical bed to be brought into the house and we are scurrying about this weekend getting other odds and ends like pads to go on top of the sheets, a waterproof mattress pad for a twin bed, cups and spoons that might make feeding easier, etc... I am hoping to be able to stay a little while longer to make sure that things are do-able at home, to be sure Mom is safe and comfortable, and to have as much time with her as possible. Dad has already called a friend of our neighbors to knock down a wall in the basement family room that is no longer needed for the old boiler and heating system. This way Mom gets more light and there will be more room for people, furniture, medical devices, and other things. The plumbers are at the house today putting on some finishing touches and Dad plans on spending the weekend getting the room ready for her. She has her bird feeder now hanging from the bottom of the deck and we have been cutting some of the lilies that Mom planted in the yard to put in vases by her bedise.
I continue to stay here most of the time and hang out with Mom. She's had very little pain these past couple of days, which we are very wary about because of how much she has had over the last few months. Dr. Senatus recommended Neurontin or Lyrica for her pain when it does begin to recur, because the narcotics make her so agitated and the pain is centrally located and may respond better to this type of drug.
In the meantime, Mom has apparently been spreading family secrets, like one she told our cousin Pat yesterday. I wasn't aware either, but she had killed a boat builder and Dad had buried him in the backyard. She has also been questioning Dad on a fairly regular basis about him "sleeping with women". Some of it is pretty amusing, though it would be great to have her clear a bit more. I know that we would all love to have some more time with Mama Marian.
Friday, August 7, 2009
Wednesday, August 5, 2009
Wednesday
Today is a better day so far. I am currently sitting by Mama Marian's bedside and, for the first time in five days, she is sleeping. In fact, she even managed to sleep through the psychiatric rounds with Dr. Hill and his ducklings. She is also currently out of restraints for the first time since Sunday. Her speech is still very confused and difficult to comprehend for the most part, but you can understand what she is trying to get across much of the time by her expressions, movements, and tone of voice. She has been entertaining everyone today, in fact, as her mood has been very pleasant and her sense of humor is clearly returning.
A couple of hours after my last post we received a phone call from the nurse at McLean, who was very concerned with Mom's restlessness and agitation. A few minutes later Abby, the NP at Dana Farber, called in response to Dad's earlier email regarding the change in symptoms. Abby recommended that we take Mama Marian to the hospital, as it was getting too risky for all of us to keep her home. The nurse from McLean agreed when she arrived at the house around 2pm or so and she called for an ambulance to take Mom to UCONN Hospital.
The next few hours were excruciating, as Mom grew increasingly disoriented, agitated, and paranoid. She began screaming before we reached the hospital and I could hear the fear in her voice immediately. It was as though someone had flipped a switch and Mom became extremely labile, screaming in anger one moment and sobbing in terror and grief the next.
Dr. Fuller, the ER physician, was very patient and very respectful of our wishes, experience, and recommendations on how to treat and manage some of Mom's symptoms. He listened carefully as I explained the last eight months as succinctly as possible and took our lead on holding back on narcotics, opiates, and benzodiazepines because of her adverse, and often contradictory reactions to them. Dr. Fuller requested a consult with the on-call neurologist, whom came in shortly after to examine Mama Marian. During her exam, the neurologist had Mom keep her eyes on a five-dollar bill she had plucked from her white coat. In the blink of an eye, Mom seized the money and had ripped it in half. She clutched her portion of the bill tightly and did not release it until Dad pried it from her fingers before the doctor left. The neurologist, Dr. Greenspan (yes, we called her Allen but she was not amused) noted many of the same neurological deficits that have developed with the tumor over the past eight months. She and Dr. Fuller ordered a CT scan after trying to sedate her a bit with 400mg of Seroquel, two Percocet, and two muscle relaxers.
The ride to radiology was a brief one, as Mama Marian decided to climb off the stretcher mid-way through. She began yelling and screaming as though we were taking her to the torture chamber so they wheeled her on back to her "room" in the ER. The doc ordered an injection of Haldol to try and sedate her further, but this just made her even more agitated and angry. Once she seemed to be a bit calmer, though, they tried to take her to radiology again. This time we made it to the CT scan machine, where Mom promptly spread out over the stretcher and the CT scan bed and cursed a few techs out... so, we returned again to the "room" in the ER. On our way back Mom was extremely agitated, so I tried again to calm her and help her lie back on the stretcher/gurney. I received another chomp on my right shoulder and let out a nice yelp so that now not just 99%, but 100% of people in the ER were staring at us in horror.
After this, Mom received another injection of Haldol and anesthesiology was called. They gave her the Michael Jackson cocktail of Propofol to knock her out. The CT scan was done, she was returned to her "room", and we waited while they prepared to admit her. Little did we know, she would not be admitted until the next afternoon...
Monday and Tuesday brought some changes, good and bad. A psychiatrist, Dr. Hill, met with Mom and explained that he and the psych team were going to experiment with some medication to counter the psychotic effects from the narcotics and opiates she had been given. She has responded well to Zyprexa and this is her second day on this. She has also just been prescribed Elavil for depression and for her pain, while the Cymbalta that was started last Wednesday was discontinued. They are also weaning her back off the Decadron, as she does not have much edema apparent in her scans. Mama Marian finally got some food in her system yesterday around noon, as she had not eaten since Sunday. And today, finally, she began to sleep again. She had not had any more than 20 minutes or so of sleep since Friday night.
We managed to get Dr. Senatus, Mom's neurosurgeon, involved again with Mama Marian's case. He came yesterday for a consult and Mom was delighted to see him again. Dr. Senatus explained that much of Mom's pain is "centrally located" and is very difficult to treat. However, he recommended a couple of drugs and will be following her for the remainder of her hospitalization.
In the meantime, Mama Marian has had some great visits and advocacy from friends at home and work. Mary T. has been so good to Mom and has helped me and Dad out quite a bit as well. After her visit with Mom on Monday, I called her to put her on the case yesterday morning while I contacted Dana Farber, Dr. Senatus, and Dr. Levine to get them further involved.
There are many questions looming... what caused what? Why is this happening this way at this time? What exactly is going on and how long will it continue? I have been trying to stop the questions, because they are becoming less and less important these days. What matters is that we are doing what Mom would want us to do; we are making sure she is as comfortable and pain-free as possible. I suppose we have the rest of our time on earth to ask questions, but for now it feels like somewhat of a relief to put the puzzle down and take a look at the bigger picture. We hope to bring Mom home when she is discharged and will have Hospice in place. If she is not able to be managed at home, the doctors have presented us with inpatient Hospice options as well. We are lucky to have this time with her and will take the good days, or hours sometimes, as they come.
A couple of hours after my last post we received a phone call from the nurse at McLean, who was very concerned with Mom's restlessness and agitation. A few minutes later Abby, the NP at Dana Farber, called in response to Dad's earlier email regarding the change in symptoms. Abby recommended that we take Mama Marian to the hospital, as it was getting too risky for all of us to keep her home. The nurse from McLean agreed when she arrived at the house around 2pm or so and she called for an ambulance to take Mom to UCONN Hospital.
The next few hours were excruciating, as Mom grew increasingly disoriented, agitated, and paranoid. She began screaming before we reached the hospital and I could hear the fear in her voice immediately. It was as though someone had flipped a switch and Mom became extremely labile, screaming in anger one moment and sobbing in terror and grief the next.
Dr. Fuller, the ER physician, was very patient and very respectful of our wishes, experience, and recommendations on how to treat and manage some of Mom's symptoms. He listened carefully as I explained the last eight months as succinctly as possible and took our lead on holding back on narcotics, opiates, and benzodiazepines because of her adverse, and often contradictory reactions to them. Dr. Fuller requested a consult with the on-call neurologist, whom came in shortly after to examine Mama Marian. During her exam, the neurologist had Mom keep her eyes on a five-dollar bill she had plucked from her white coat. In the blink of an eye, Mom seized the money and had ripped it in half. She clutched her portion of the bill tightly and did not release it until Dad pried it from her fingers before the doctor left. The neurologist, Dr. Greenspan (yes, we called her Allen but she was not amused) noted many of the same neurological deficits that have developed with the tumor over the past eight months. She and Dr. Fuller ordered a CT scan after trying to sedate her a bit with 400mg of Seroquel, two Percocet, and two muscle relaxers.
The ride to radiology was a brief one, as Mama Marian decided to climb off the stretcher mid-way through. She began yelling and screaming as though we were taking her to the torture chamber so they wheeled her on back to her "room" in the ER. The doc ordered an injection of Haldol to try and sedate her further, but this just made her even more agitated and angry. Once she seemed to be a bit calmer, though, they tried to take her to radiology again. This time we made it to the CT scan machine, where Mom promptly spread out over the stretcher and the CT scan bed and cursed a few techs out... so, we returned again to the "room" in the ER. On our way back Mom was extremely agitated, so I tried again to calm her and help her lie back on the stretcher/gurney. I received another chomp on my right shoulder and let out a nice yelp so that now not just 99%, but 100% of people in the ER were staring at us in horror.
After this, Mom received another injection of Haldol and anesthesiology was called. They gave her the Michael Jackson cocktail of Propofol to knock her out. The CT scan was done, she was returned to her "room", and we waited while they prepared to admit her. Little did we know, she would not be admitted until the next afternoon...
Monday and Tuesday brought some changes, good and bad. A psychiatrist, Dr. Hill, met with Mom and explained that he and the psych team were going to experiment with some medication to counter the psychotic effects from the narcotics and opiates she had been given. She has responded well to Zyprexa and this is her second day on this. She has also just been prescribed Elavil for depression and for her pain, while the Cymbalta that was started last Wednesday was discontinued. They are also weaning her back off the Decadron, as she does not have much edema apparent in her scans. Mama Marian finally got some food in her system yesterday around noon, as she had not eaten since Sunday. And today, finally, she began to sleep again. She had not had any more than 20 minutes or so of sleep since Friday night.
We managed to get Dr. Senatus, Mom's neurosurgeon, involved again with Mama Marian's case. He came yesterday for a consult and Mom was delighted to see him again. Dr. Senatus explained that much of Mom's pain is "centrally located" and is very difficult to treat. However, he recommended a couple of drugs and will be following her for the remainder of her hospitalization.
In the meantime, Mama Marian has had some great visits and advocacy from friends at home and work. Mary T. has been so good to Mom and has helped me and Dad out quite a bit as well. After her visit with Mom on Monday, I called her to put her on the case yesterday morning while I contacted Dana Farber, Dr. Senatus, and Dr. Levine to get them further involved.
There are many questions looming... what caused what? Why is this happening this way at this time? What exactly is going on and how long will it continue? I have been trying to stop the questions, because they are becoming less and less important these days. What matters is that we are doing what Mom would want us to do; we are making sure she is as comfortable and pain-free as possible. I suppose we have the rest of our time on earth to ask questions, but for now it feels like somewhat of a relief to put the puzzle down and take a look at the bigger picture. We hope to bring Mom home when she is discharged and will have Hospice in place. If she is not able to be managed at home, the doctors have presented us with inpatient Hospice options as well. We are lucky to have this time with her and will take the good days, or hours sometimes, as they come.
Sunday, August 2, 2009
The Longest Roller Coaster Ride...
...is 273 seconds long. That's the longest one in the world. 273 seconds is about four and a half minutes in duration. It must be a blast. Roller coasters are something you decide to climb on and off and, for a few seconds or minutes, everything spins out of your control. It's terrifying and it's breathtaking, but it's only fun because it stops and you know that it's going to stop soon... within no more than 273 seconds.
This ride is longer. It's terrifying and it's breathtaking and it's not any fun because you don't know how long it is until it stops and you don't want it to stop because you can't get back on when it does. In the meantime, though, you have no control and slowing down or speeding up happen all on someone, something else's time.
We start Hospice with McLean on Monday. After another week of pain and little to no relief without hallucinations, delusions, and extreme discomfort Mama Marian will stop palliative treatment for her brain cancer. She can no longer stand on her own, walk at all, feed herself, or make it to the bathroom. It is terrifying and painful for her just to get out of the bed. When we help her to move her on to the little bedpan/hospital commode it is horribly frightening and painful for her. She yells out and grabs us with a shockingly powerful grip and does not let go until we pry each finger individually off and move it to the next handle, sheet, hand, back, neck, or piece of clothing.
Beth O., Mom's home health care aide, and Jean M., Mom's home-based physical therapist, called me on Friday afternoon to let me know that it was time for me to come home. Things were "different" and changing quickly. Mom told Beth and Jean that she no longer wants to leave the house for anything. She agreed that Hospice seems to make the most sense at this point in time.
Mom started a Fentanyl pain patch on Wednesday after seeing Dr. Rosenberg for a required referral to a pain management clinic/doctor. She slept all day on Thursday but was up most of the night with increasing pain and discomfort. On Friday morning Dad woke her up very early for an appointment with a pain management doctor in New Milford. It was almost impossible to help her down the stairs and, when she reached the landing, Dad had her wait while he brought the wheelchair up to the front steps of the house so that he could take her down the lawn to the car. She was unable to walk the remainder of the way down the stairs.
The pain management doctor gave Mom few options that we have not already explored. He told her that she could increase her muscle relaxer before bed but, if she does this, should not take it during the day. He also gave her a Lidocaine patch to put directly on her leg and ankle where she is having the most severe pain. Another prescription for Valium was written and Botox was briefly discussed once more, though the doctor did not expect it to help much and does not offer this form of pain alleviation treatment.
When Mom came home that morning she could barely get out of the wheelchair and into the house. Dad helped her to the couch in the basement family room, where she has stayed since. Beth and Jean helped us with the decision to pursue Hospice and Jean spent the afternoon and evening setting up weekend nursing and initiation of Hospice care for Monday or Tuesday at the earliest. I drove home to Connecticut from Virginia that night, but did not arrive until about 2am.
The weekend has been excruciating. I cannot think of a more appropriate word to describe almost every moment over the past two days. Mom is still in pain most of the time and is extremely restless. She gets up to use the bathroom several times each hour, but often is unable to go at all. Her speech is confused and chaotic, most of it incomprehensible. The "word salad" or schizophasia is often very agitated, especially when she is in pain or experiencing some kind of drug-induced psychosis.
The tremors and muscle cramping have spread from her right side to her left. We are unsure of whether or not this is mass effect from the bulkage of the tumor, meaning that the cells are now impacting the left side of the brain and right side of her body. This midline shift can indicate swelling or tumor growth that causes symptoms to move from one side of the brain to both sides. It may also be a side effect of the Fentanyl though, as one of the more severe side effects of this medication involves muscle spasms and seizures. These days, it is almost impossible to discern what is the illness and what is the treatment.
In between the pain and discomfort Mama Marian is very sweet and full of smiles, laughter, and "I love you"s. She is consistent in telling us that she "needs to go" and "can't do it anymore". At times, I think she feels as though we are keeping her here, though we continue to let her know that we are with her wherever she is and are okay with whatever it is she wants or needs to do. She tells us that she's "got to go" again and again and, when Dad asked her Friday night where, Mom replied, "to the place where people go when they die". Other times, Mom seems to be carrying on conversations with friends, family, or other people who aren't in the room. Even when she sleeps she talks, sometimes mumbling and other times is quite clear.
There are times that are so painful and so frightening that it seems unreal, like this cannot actually happen in real life... like we are in this forever unfolding dramatic movie. Mom's desperation is unbearable during these times. Last night we helped her into the wheelchair so Dad could change the sheets. After just a minute in the chair, she was terrified and extremely agitated. I tried to calm her, hold her, help her move so she could be comfortable, but nothing seemed to help. She grabbed at me and finally bit me hard on the shoulder. When I screamed out she suddenly looked at me in this moment of pure lucidity and her face fell while she started to cry. It was awful. Mom's panic takes her farther away and she forgets who we are in these moments. Last night around midnight she became actively psychotic and extremely agitated, yelling at us to let her go and furious with someone or something that we could not determine. We tore off her Fentanyl patches and her agitation and aggression have since subsided. Though the confusion and pain continue, she does seem a bit more oriented.
Mama Marian is currently laughing in her sleep, though as she still does at times. She had an hour or so yesterday of laughter and smiles where she seemed high on the meds, but still restless and unable to relax. Right now she is talking to me in her sleep, repeating "Megan began... Megan began..." And then it turns to "ow, ow, ow... oh, Megan... ow!!!" and another bout of pain and restlessness ensues. Sleep only seems to take her away for minutes at a time anymore. She falls asleep but is awakened soon after, always telling us she needs to go, has got to go.. then we help her to stand, only so that she can beg to fall back on the bed. It feels endless and full of torture and unknowing a lot of the time.
Mom's roller coaster ride continues. The adrenaline rushes, the wind pounds, your stomach drops as the ride goes over another hill...
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