Terminal Restlessness

We learned the meaning of a new term in the Hospice lingo. Terminal Restlessness. Terminal Restlessness has tired me out so much that I am just going to plug in a good description of this surprising occurrence and comment on Debbi’s particular experience afterward… Here is material from http://www.hospicepatients.org/terminal-agitation.html

Terminal Restlessness: A Major Distressful Symptom in the Dying

Many families may be surprised when a terminally ill (and usually calm) family member becomes restless or even agitated. The depth of such restlessness or agitation varies from patient to patient. When moods change or personalities seem to change, family members may be completely bewildered and feel helpless: not knowing what to do. It is common knowledge that individuals who are experiencing even minor illnesses may demonstrate mood changes such as irritability, anger, depression and avoid communication with others. When a terminal illness not only initially strikes, but is now nearing the end, patients may experience profound mood changes. Such mood changes are often difficult for family members to “handle.” Causes and treatments for restlessness and agitation are well-known among the palliative care professionals who work with the dying on a regular basis.

What is Terminal Restlessness or Agitation?

Those who work with the dying know this type of restlessness or agitation almost immediately. However, the public and patient’s family may have no idea what is going on and often become quite alarmed at their loved one’s condition. What does it look like? Although it varies somewhat in each patient, there are common themes that are seen over and over again.

Patients may be too weak to walk or stand, but they insist on getting up from the bed to the chair, or from the chair back to the bed. Whatever position they are in, they complain they are not comfortable and demand to change positions, even if pain is well managed. They may yell out using uncharacteristic language, sometimes angrily accusing others around them. They appear extremely agitated and may not be objective about their own condition. They may be hallucinating, having psychotic episodes and be totally “out of control.” At these times, the patient’s safety is seriously threatened.

Some patients may demand to go to the hospital emergency room, even though there is nothing that can be done for them there. Some patients may insist that the police be called … that someone unseen is trying to harm them. Some patients may not recognize those around them, confusing them with other people. They may act as if they were living in the past, confronting an old enemy.

Universal Metabolic Changes May Cause Restlessness and Agitation

As the terminally ill near death, body organs and systems begin to fail to a greater and greater degree. Kidneys stop producing as much urine and function poorly, the liver and other organs also start to shut down. Waste products from the cells and tissues of the body begin to build up in the tissue spaces and blood stream. Biological and chemical balance is lost. The pH in the blood and other areas may change dramatically. In many patients, these changes alone may account for restlessness and agitation that may be quite severe.

Debbi’s restlessness

Last night, Debbi awoke yelling Please Jan.. Jan Please. Having been quite tired from trying to relax Debbi after the family visit, and from several consecutive nights with little sleep, I was quite unprepared be woken at 2am to find Debbi sitting on the edge of our high bed, feet over the edge, and leaning forward ready to fall on her face. Someone of average height sitting on our bed would find the top of their head over 5 feet high so I would not want to think what might have happened if Debbi had had a tremor and had fallen forward.

True to the descriptions above, Debbi started yelling out saying that I was not helping her. Saying that I was never a help to her. Any defense I proffered, Debbi retorted, “You are lying. You alway lie.” “Jan PLEASE… YOU DON’T UNDERSTAND!!!” I gently laid her head back on the pillow as I shifted her legs to line up with her body along the long axis of the bed. You might say I make a double impression with a single application. Shira had taught me this “scoop” move to transition a patient from a sitting position to laying down. I could just feel Debbi trying desperately to resist me.

Then some bouts of nausea began I raised her back to a sitting position and gave her the ever ready barf bucket. Instead of vomiting, Debbi again began screaming. The whole house woke up. I had Josh call the Visiting Nurse hotline. Thankfully, Margot was on call. Margot is an unassuming nurse, eminently professional, no-nonsense certainly and yet we can tell she has taken a shine to us and definitely to Debbi. Margot and Debbie A. together make up our primary Nursing care and when Lyn joins in stuff gets done.

Margot asked me to administer Haldol (Haloperidol) and then to repeat the dose in 1 hour. She also laid out a schedule of drugs to get us through the night. Margot called at 7am to check on us and her instructions were mostly successful. There were still scary times that night but once Margot explained more about the terminal restlessness I was better prepared to face its ugly presence however I was very tired at that point so every time I tried to lay my head on the pillow, the restlessness reared its ugly head and I had to provide care for Debbi to talk her down as much as possible.

Somewhere around 9am, the restlessness came on strong. All the family gathered around. I asked Josh to call Margot back. In the heat of the moment, Josh called the wrong number. He reached Mary our Hospice Social Worker instead. Bonus for us. Mary said she would be right over and that she would call Debbie A. since Margot had been on call all night. Mary did come right over and she spent about three hours here making sure everyone was understanding of the idea.

Debbi A. walked in literally… the VNA nurses are so at home here that the just let themselves in and let themselves out and help anyone who needs help. Anyway, Debbie A. lets her self into the bedroom and gives me a gentle tap waking me from a 30 minute rest. “How is our girl?”, Debbie A. asks. After debriefing me, Debbie A. convenes a family meeting and describes the restlessness to everyone. Debbie A. then lays out a schedule alternating liquid Ativan and liquid Haldol in conjunction with some ABHR suppositories. The suppositories combine Ativan, Benedryl, Haldol, and Reglan (used to treat heartburn).  Staying ahead of the situation is supposed to help minimize the effects of the restlessness. We were also told that the house should become quieter so as not to agitate Debbi. In addition, Debbie A. said it would be a good idea to cool the room and provide some quiet soothing music.

I did not anticipate the effect the Enya music would have on me. Once again I turned into a ball of mush. The music, the dim lighting, the cool breeze as Debbi said, just makes for a somber feeling. Crying as before. We are not there now but the end is moving undeniably closer and closer. Farewells were said, I love you Mommy. I will keep you with me Mommy. You are my only friend Willy (my nickname for Debbi) and I cherished you all my life. You rescued me and gave me a home and you gave me a family and you gave me yourself. I’ll love you always. All words. Touching heart wrenching words. But, deeds are different than words and the actual passing may be upon us. Hence the almost continual tears today.

Previously, I was able to leave Debbi when she was sleeping and work on the computer just outside the bedroom. Today that was not possible. I had to spend every minute with her to stop her from bolting from the bed and from falling. She also needed frequent changes of the Depends and I am still not good at changing her. Plus, her vitriol can be quite harsh even with the medication. “Please Jan you are not doing this right… Please Jan help me… Please Jan Jan Please” a constant refrain.

Joshua spared me for a breather. I headed right for the beach. Where better to try to commune with G-d than where the beauty and majesty of the ocean and the land meet. I walked out on the low tide sandbar until me ankles were covered. I pleaded for my wife to be taken or to be returned to me right away. I screamed for rachmones (mercy) on my wife, I begged for protection for my children. I called to Debbi and asked her to see the beach through my eyes. The gentle rains of the morning were replaced by a beautiful sunshine and it was possible to see the Sagamore Bridge and all the way around Cape Cod Bay to the Pilgrim Tower in Provincetown.

The tower was planned in 1892 to commemorate the landing of the Pilgrims in Provincetown where they camped for 5 weeks before sailing to Plymouth. Like the Statue of Liberty, it took several years until the tower could begin. In 1907, President Teddy Roosevelt traveled to Provincetown to lay the cornerstone. Finally three years later in 1910, President William Howard Taft was on hand to dedicate and open the tower that topped out at 252 feet. From our beach the tower is visible to the northeast at a distance of over 12 miles. Seems like it should be impossible to see that far from sea level but the back of the envelope calculation says that 7 times the height in feet divided by 4 is the square of the distance to the horizon. So from the vantage point of the tower, sqrt( 7 * 252 / 4) is approximately 40 miles so a person on the top of the tower would be able to see 40 miles to the horizon so we can see the top of the Provincetown tower from our beach in Dennis. Debbi and I would often use this landmark to gauge the clarity of the day. It looks no more than a piece of a toothpick in the distance but if you know where to look, on a clear day you can find it.

After screaming all I could scream and hollering all I could holler, I returned to Debbi’s side to continue my vigil. Yes, shortly thereafter, Debbi was alternating between sitting up and laying down, telling me I was not being helpful. The Hospice-Hospital Liason, Lyn stopped by to help out. We are still trying to get the right combo of medications to help this but it seems elusive. I have to be honest that as I write this note at 11pm Wednesday night, I am a bit scared to go to bed for fear that Debbi is going to wake up and because I am so tired I will not hear her and I am concerned because she might hurt herself. Also, in some part, because this might be our last night to have Debbi with us. Things are just to terrible to go to sleep so maybe I will just email my wonderful sister-in-law Renee who does not sleep either. She has been a constant support and has always insisted that I fill her in on my state of being after I describe Debbi’s own condition.

Being a primary caregiver is much harder than I ever realized. On top of trying to do the best job possible for the person in your charge, you suffer degredation, humiliation, and ridicule… and then there is the physical aspect… the risk of injury or harm occurring on your watch. Parenting is difficult also but I am finding this experience just so exhausting. My deepest respect to all in the medical profession who are responsible for continuous patient care. It is hard for me to keep the typing going and I am facing about 7 hours before the kids will wake and can spell me for a short nap. Work is falling behind and the mail is piling up but I have to focus on my primary mission and the other chips will just have to fall where they may.

Lets see how Debbi sleeps during the night. I tucked the sheets and blankets tightly between the mattress and the box spring all around her so I don’t thing she will be able to bolt out of bed. I might be able to get a few hours of shuteye myself.

Cinco de Mayo

Yesterday was May 5th. Cinco de Mayo. At 1pm, after tending to Debbi’s every need throughout the night, I turned to my children, whether mine or not, the young adults in the Cape House are my children… I turned to my children and said, “We have all worked diligently most of the night to keep Debbi comfortable and to provide her with the best care we can possibly provide…. we need a Cinco de Mayo festival to rejuvenate us and to provide us with additional strength for Debbi.”

The group went to work. I supplied the credit card and everyone else supplied the imagination. After an hour of planning, people departed to buy supplies, others started cooking, others were decorating, others were setting the table, I hung up a paper mache burro filled with candy, people made quesedillas and other traditional Mexican food, all  Kosher of course. The plans called for an early dinner, a smash the burro fest, and settling in to watch Three Amigos.

Now this may sound disrespectful to Debbi to have a party going on while she lay suffering. But it never became a party. Not by design and not in actuallity. In fact, in actuallity it was about having a theme and everyone working together in close quarters. Spending time together. Listening to each other’s suggestions and providing encouragement and kindness. All the food was prepared and arranged beautifully. The table was adorned with a festive Cinco de Mayo tablecloth. Strewn about were items of confetti and potpurri. Sure we wore funny glasses, suspenders, and hats and some of us had mustaches (our own)!!. We sat together and talked. We told stories.

When it was time to break the pinata, we decided it would make too much noise. When it came time for Three Amigos, we watched a bit and decided we would rather spend time with each other. So, Cinco de Mayo was a beautiful opportunity for our family to work its magic. No chance that anything disrespectful to thier special Mother would arise. Knowing the outcome, the initial suggestion made perfect sense and did indeed serve to lift the spirits of our loving family.

Emotional meeting with Debbi’s Father

Yesterday Debbi’s Father, Robert Capin, traveled the whole way from Debbi’s home town of Wilkes-Barre, Pennsylvania to see Debbi. Originally, Bob, along with Debbi’s brother David and sister Ellen were going to fly to Boston but the entire East coast was socked in with an overcast weather and David drove the trio 375 miles to the Cape House.

Bob was ushered in to see Debbi. We set up a kitchen stool so that he could be seen well by Debbi and as he seated himself, we all joined in around the rice bed. [By the way, in case you were unaware, which I was until Debbi brought it home, our rice bed is a 4 poster bed with ornately carved columns on each corner. Halfway up the mahogany corner posts are carvings of rice plants.]

The best laid plans… unfortunately within 10 minutes Debbi became agitated. The discussion had some how caused Debbi to cry and to start waving her arms wildly frequently raising her voice to get her point across. I became very concerned and called the visiting nurses. Acting with their mandate, I asked everyone to leave the room hoping to lay in bed with Debbi whispering into her ear and calm her down. I figured that once she was calm we could arrange for Debbi to talk to her father alone. Hopefully that would be able to be carried out without causing Debbi agitation.

After about 20 minutes, Debbi was indeed calm and I invited Bob to rejoin her alone. I asked him to talk to her of her childhood and how she was loved. I closed the door behind him and was surprised to see him emerge 5 minutes later. Debbi had fallen asleep. Bob, David, and Ellen left shortly thereafter.

It is truly tragic that things have deteriorated to this point. I wish that the visit and Debbi’s entire journey could have played out much differently.

Sing along with Debbi

At 1:45am I was awakened by Debbi who said she wanted to go to the bathroom. I could tell that she was weak so I ran to get the portable commode and convert it from a raised toilet seat to a full fledged commode. I was able to get Debbi seated but the return trip to the bed was not successful. In the past Debbi was able to walk to the toilet under her own power… I merely had to guide her by placing my left hand under her right armpit and holding her right hand in my right hand. Using this grip, I was able to steer her and control any lateral movement. This morning however, as Debbi was climbing the steps to get up on her prized raised rice bed, Debbi’s legs gave out. I was not in position to take her complete weight so I had no option but to lower her gently to the floor.

I called loudly for Shira our resident Physical Therapy student and the whole house came running. We stood Debbi up and using a community effort, we lifted Debbi up onto the bed, changed her into a Depends, dressed her in a new nightshirt and made sure she was comfortable.  By the way, does one need a PhD to put Depends on a loved one? Oh yeah, I have a PhD and I was unable to get the job done. I was at the grocery store and noticed Depends packages. I looked at the pictures on the labeling carefully as I did not want the pull-up kind. I saw one package that had side tapes pictured and figured that they worked like the typical diaper. When the time came to put them on Debbi, I could not believe that the front and back were connected. It did not dawn on me that this model was a pull-up that featured tape that can be used to provide a tighter fit once the pull-ups are fully engaged. The package did not feature text describing the diapers as pull-ups. In fact there were no descriptions at all.  Not realizing this, I ripped the pull-ups down the sides and tried to put them on like a regular diaper. I was further confused when I saw that as a result of my ripping the sides, the tape tabs were on the front side of the diaper and could not be used to secure the fit. They were of no help. At 1:45am with Joshua trying to help me, I felt helpless. We finally gave up. We abandoned the Depends and went back to regular underwear! I just could not figure it out!!!

Once we got Debbi situated, we all breathed a sigh of relief. Everyone was happy that Debbi had been returned to her bed from lying on the floor. We stayed with her and she began talking to everyone. During a lull in the conversation, remembering that she sang Que Sera Sera to me a few nights ago, I suggested that Debbi sing a song. She started singing songs that she had sung to the kids when they were young.

Among the songs sung were…

Yankee Doodle

California Dreaming

Miss Lucy had a steamboat

Big Fat King

Five green and speckled frogs

Oh Chester, have you heard about Harry just got home from the Army…

When Debbi began to sing this tune, she started waving her arms and hands as she had taught the kids the hand motions to the song and the song just was not the song without those hand motions so Debbi naturally performed the song totally with all of us following her lead… singing with gusto and shifting smartly from one hand motion to the other.

The mood was light. Everyone was having fun with Mom. Like all good things the singing came to an end and Debbi tired. The kids went to bed around 3am while I talked to Debbi and helped her relax for another hour or so until she fell asleep.

The evening was an absolute gift. A special time to be treasured. A time of happiness with Mom.

No Wake Zone

In boating, the No Wake Zone conveys the following message

Nationwide, any vessel operating in a speed zone posted as “No Wake” must operate at the minimum speed that allows the operator to maintain steering and make headway.

There are some similarities between this nautical phrase and the conditions at our Cape House. For you see, we are currently in a “No Wake Zone” on several levels. While not a rule, the visiting nurses requested that we do not wake up Debbi. Instead we are supposed to let her sleep. If she arises on her own, we can chat with her, give her medicine, tell her of our great love for her, etc. If she does not wake, we are to let her sleep. Just as the boat is to manuever through the channel in a manner that does not cause a wake (the turbulance imposed on the water by the passage of the vessel) that could jostle other boaters on their prized possessions, so to, we are to walk by Debbi’s door in a quiet manner so as not to wake her. In fact, the whole house is turned low. Thus we are under a no wake zone for two reasons… 1) We should not wake Debbi directly; 2) We should not carry on our activities in a manner that will wake her as a result of the noise we generate.

I would estimate that Debbi has been asleep for 22 hours of the past 24. Even when she did awaken, it was very difficult to communicate meaningfully with Debbi. My brother Scott sent a touching email which I would like to share….

Jan.

If you can, please tell Debbi the following:

Debbi, I want to thank you for making a difference in my life. In my
youth, you were a female role model that I needed. In my teen years,
together with Jan, you gave Curt and I a chance to get away from York
and do fun things like teaching me how to ski. In my 20s you fixed me up
with my life partner. I love you for all you’ve done for me with humor,
generosity and fun. In a word you are remarkable. The courage and bravery
which you have shown while enduring through cancer has been an
inspiration to everybody. If we don’t get the chance to talk again, know
that I will always hold you in my heart as one of the special people in
this world. Que sera sera.

Love always,

Scottie

[ Jan, Curt, & Scott are three brothers born to Rosaline Winiker Buckler of Millis, Mass.]

Tomorrow we all return to the weekday responsibilities and must let the weekend pursuits lay still for five more days. In addition to the workday requirements, I have to get Debbi and I excused from Jury Duty in New York City, contact a funeral home to discuss pre-arrangements, and double check the location of the burial plots that were reserved for me in Millis, Massachusetts some years ago. Millis is quite far from Eretz Yisroel (Israel) but the fact that my grandparents, my uncle and especially my beloved mother are buried there gives me good reason to lay Debbi to rest there as well. Debbi has been at the cemetary many times and she approved of this location.  When the time comes, I will definitely join her there.

As far as Jury Duty goes, there is an interesting story. In February of 2008, Debbi and I were summoned to serve on Jury Duty one week apart. We both adjusted the dates to dates in May 2008 when we could go together. Other plans were in store for us because in March the cancer was discovered. I collected appropriate documents and went to 60 Centre Street in Manhattan to present the case that Debbi could not serve because of the chemo treatments and I could not serve at that time because I had to take care of Debbi. The clerk I was assigned to treated me in a kind and genuine manner. I found out that her father had recently passed due to cancer. The clerk said, “I am going to reschedule you for a year from now and pray that you and your wife will be healthy enough to serve then.” So, it turns out that despite her good wishes and prayers, we will not be able to serve as jurors. From Massachusetts, it is downright impossible to get through on the phone to inform the clerks of our current status. If the authorities come after me for failing to appear… so be it!!

I once talked to Debbi about an inscription on her headstone. Debbi said she wants the words

אֵם-הַבָּנִים שְׂמֵחָה  ( Aim HaBanim Semeycha)

engraved on her headstone along with her name and the listing of all the beloved spots she held. Beloved Wife, Beloved Mother, Beloved Daugher, Beloved Sister, Beloved Friend… etc.

The above Hebrew phrase is taken from Psalm 113 and is part of the Hallel prayers that are said on Jewish holidays and the beginning of each month. The enire sentence reads:

מוֹשִׁיבִי, עֲקֶרֶת הַבַּיִת–    אֵם-הַבָּנִים שְׂמֵחָה

(Mosheeve Akeres Ha Bayis, Aim Habanim Semeycha) which loosely translates as

G-d transforms the barren woman into a joyful mother of children.

Our tradition at Passover seders at the time the Hallel psalms are said has been to have Debbi recite this sentence giving thanks to the Master of the Universe for bestowing upon her the opportunity to become a parent.

Indeed, Debbi and I were unable to have children for the first seven years of our marraige. Doctors told us it was unlikely, if not impossible, that we would become pregnant. I say we because both of us had to undergo extensive testing and the early 70s were nothing like the medical environment of today where in-vitro fertilization is commonplace.

A close friend, who is also a Rabbi I often turn to, once said to me that the “Essence of life is in the struggle.” This has proven to be so true on the simple level and also on many deeper levels. It is no wonder that Debbi loves her children so thoroughly. They did not come easy. Especially Rea, the first child. As I said, she was seven years in the making. Debbi would have done anything and did do so many many things to become a parent. She appreciated the attainment of parenthood every single day. She invested herself in parenting. She strived to motivate each child to succeed, but in a manner that was unique for each child and she taught all the children to celebrate the successes of their siblings.

Yes, Debbi is a happy Mother of children but twisting the phrase a bit, Debbi is also a mother of Happy Children. I pray that all the memories of their Special Loving Mother always remain as vivid as the they are today.

Friday Night Berachos

Like many many families, Debbi and I have made it a point to bless our children every Friday night. We have made it our tradition for both Debbi and I to bestow the beracha (blessing). With no guarantee that there would be another Shabbos to receive the beracha from their mother, this Shabbos was very special.

Debbi had to stay in bed, so we brought the children to her. I stood at the side of the bed near Debbi as Rea approached. She bent her head so that Debbi could place her hands on Rea’s head. With my hands also on Rea’s head, we recited the traditional words.

יְבָרֶכְךָ יְיָ וְיִשְׁמְרֶֽךָ.

יָאֵר יְיָ פָּנָיו אֵלֶֽיךָ וִיחֻנֶּֽךָּ.

יִשָּׂא יְיָ פָּנָיו אֵלֶֽיךָ וְיָשֵׂם לְךָ שָׁלוֹם.

May G-d bless you and safeguard you.

May G-d illuminate His countenance for you and be gracious unto you.

May G-d turn His countenance unto you and establish peace for you.

Debbi was again working hard to pronounce the words. As she began, Rea began sobbing, sobbing, sobbing. This pretty much set the tone. Following the blessing itself, Debbi told Rea how deeply she was loved. Rea lingered, enjoying her mother’s embrace. Josh was already in tears as he approched Debbi and I for his turn. As Aaron and Stephanie were in Boston studying for exams, Shira received her beracha next. Shuie and Katherine followed in succession. Aaron & Stephanie received their special blessing as they arrived today.

A mother’s beracha is a powerful thing. For us it has to be because this beracha might have to carry my dear children the rest of their lives. I have heard from many people concerning our good fortune in that Debbi has been lucid and we have an opportunity to say goodbye. Goodbyes were said this Shabbos. Heart-wrenching goodbyes expressed along with heartfelt thanks for the great job that Debbi did with us as individuals and with our family collectively.

We will take whatever good fortune we have been given at this point in time and ask for Divine blessing in stretching that beracha of caring, togetherness, and love for many, many, many years to come.

Watching & Listening

Debbi’s tremors have gotten worse. For example, she might be drinking from a bottle of Propel, with its special wide top. She will be holding the bottle and then all of a sudden, a jerky motion, or what we are calling a tremor, will yank the bottle 5 inches to the right where it spills on the blankets. The tremors can come at any time and they can affect any body part. 

Tremors at night literally wake Debbi up out of her sleep. For healthy people it is said that frequent interruptions to the sleep cycle make one very tired during the normal waking hours. Margot, another of the excellent Visiting Nurses on Debbi’s team informed me that with such a patient as Debbi, it doesn’t have to be that the interruptions lead to being more tired and therefore the lack of constant night sleep may not be the reason that Debbi sleeps so much of the day. Rather, the extended sleep hours are probably just an extension of the disease progression according to Margot. 

Nevertheless, in order to reduce the night tremors, we were advised to give Debbi 2mg of Ativan at bedtime instead of the 1mg she normally takes. I don’t know why exactly, but with Debbi’s sensitivity to medications, I felt compelled to stay awake, monitor her breathing, and in general just make sure she was alright. Except for the 2 hours that I did sleep, I stayed awake just listening to her breathing. The extra Ativan did a good job for Debbi in that her sleep seemed very restful and her breathing was quiet and regular. I even found myself trying to fit various songs to the beat of her respiration. In any case, Debbi slept better. So far, I have not seen any additional wakeful hours so unofficially Margot was proven correct.

Tremors can be caused by the disease and they can be caused by drugs such as morphine. Debbi is on a continual morphine drip at a low dose rate. The nurses, the doctor, the pharmacist all think that it is not possible to get such tremors based on the low dose rate that Debbi receives. That leaves disease progression. Still, it is hard to prove that that is its source.

Things were fairly quiet in the house today. Activities now center on completing the final preparations for Shabbos. We thank everyone for their tefillos, for their prayers and good wishes, for their support and for their love. 

Good Shabbos to all…