Gotta Get, Gotta Go

Three and a half hours later is when Kim says "All Hell Broke Loose".

Weeks ago we had purchased a "wireless" doorbell from the hardware store. We had put the ringer upstairs and the button by Robin's hospital bed. At 2:30am the doorbell began impatiently ringing non-stop. I don't remember getting out of bed - my first memory was seeing Kim in the hallway as we headed downstairs. I imagined this must be how firefighters feel, responding to an alert with no idea what it's about. We entered the living room to find Dad sitting on the bed with Robin, firmly holding her arms. She was quite ready to "leave" again. She had a cord from the bed wrapped around her right arm and the doorbell ringer in her left hand.

Dad had tried ringing us once or twice before Robin grabbed the doorbell button out of his hand and now she wouldn't let go of it. I took up position on Robin's other side and I took her left arm to reduce Dad's workload. We held her arms until she stopped squirming, but as soon as she was loose she would grab for my glasses, pickup and throw nearby items, try to bite and try to scratch. Kim scrambled around and started moving items out of her reach. Robin had a wide-eyed look and alternated between laughing and yelling. She had more power and energy than we thought was possible, but it wasn't enough to challenge us from holding her in place.

For the longest time we just kept her contained as we looked for distractions. After a long while we offered her stuffed animals which she called "puppies". She started to calm down, but then got caught up in the idea that we we're killing the "puppies". She yelled and she cried about the poor puppies and she said she was trying to save some of them, while others were already dead. She cried her heart out and yelled at us for killing the puppies. She gathered as many as she could to protect them from harm.

The toughest part for us was that we now had no way to give Robin medication if she wouldn't cooperate, so she was going to set the pace. After the longest time we had a lull in the action and an opportunity to call a Hospice nurse. I explained the evening events and the nurse reassured me that this was perfectly *normal*! She said it happens all the time and that they call it "Gotta Get, Gotta Go". They believe it’s a manifestation of fear and anxiety - the patient knows something is wrong but they don't know just what. It may also be a way for the patient to draw attention to themselves to say "I hope somebody knows that something's not right".

Most all the patients proclaim a need to go to the bathroom - somewhere we head to when we're not feeling well - or a need to go to some other place ("Gotta Goes"). Some will proclaim a need to be fully dressed ("Gotta Gets"). Apparently some families will rush around the house to get clothes and dress the patient thinking that the anxiety will subside, but of course nothing eases the patient's mind.

The nurse explained that all these actions fall under the heading of "restlessness". Hmmm, somehow I had neglected to think so expansively when I read the term in the booklet!

For many patients this "restlessness" occurs at night when things are quiet and there are no visitors. Often the family has to adjust and stay up all night. Keeping the lights on or playing the television can help keep the patient distracted.

In our case we managed to sneak some medications as we talked Robin into having a drink. Later, after a hospice nurse arrived (around 3:30am?) we talked Robin into taking some more medication. This time it took more perseverance to sneak stuff past her. We'd offered to put Tylenol into her stomach tube, but she was leery of accepting anything she didn’t see poured right out of the bottle. On the third time pouring some Tylenol into a medicine cup, we managed to distract her momentarily and add some morphine to the mix.

By 5:30am the hospice nurse had left and Dad had gone upstairs to bed. Kim took the next shift with Robin and we planned to carefully keep to a medication schedule. On Friday we added Haldol to the mix of medications to help keep Robin relaxed. As it turns out she was tired out today and very quiet, even before we received the new medication late in the afternoon.

The Hospice folks say some patients have terminal restlessness that lasts 24 hours a day until the end. Apparently it's a good sign that Robin's had a relaxed day - we hope not to see a night like that again!