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.
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.