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...