Sunday, July 27, 2008
Terminal restlessness is a common and, to caregivers, often shocking aspect of the dying process. Occurring during the last days of life, it is a form of delirium that usually develops over a short period of time -- from hours to days. The symptoms can range from simply "picking" at the bed linens to running naked in the street -- and anything in between. Here are some of the symptoms and this is, in no way, an all
- Increased confusion and decreased ability to concentrate. Disoriented to time and place. May not recognize caregivers.
- Fidgety, anxious and unable to relax. Will attempt to get out of bed even if unable to walk or sit upright.
- Disrupted sleep pattern. Ability to stay awake and fidgety for amazing lengths of time.
- Repetitive moans, groans and vocalizations, even though pain is not indicated.
- Hallucinations or "visions". Will often see and speak to dead family and friends.
- Severe agitation, hostility or physical aggression.
There are many possible causes for terminal restlessness such as: the patient's underlying disease process, liver or kidney failure, medications, oxygenation, etc. Whatever the cause, terminal restlessness can be a source of fear, frustration and sleepless nights for caregivers. The safety of the patient is also greatly compromised. They are at very high risk for falls during this phase of the dying process.
The symptoms of terminal restlessness can be medically treated with varying degrees of success. I have, however, seen many patients that appeared to be impervious to any form of medication given to help calm or sedate. In severe cases, many families choose to have the patient admitted into an inpatient unit. Here, symptoms may be treated with medications that would not ordinarily be used in the home setting and require nursing supervision.
I truly dread getting the phone call that sends me on my way to the home of a patient with severe terminal restlessness. The caregivers are sleep deprived and understandably, emotionally volatile. Above all, there is an overwhelming feeling of helplessness. A feeling of helplessness that not only envelops the caregivers, but often, the hospice nurse as well.
Friday, July 25, 2008
Sunday, July 20, 2008
2015 hrs -- It's a big house and it's a full house. I have pronounced Mr. G. dead, informed the coroner's office and called the funeral home. Wisely sensing that no one is in need of my emotional support, I settle in an unoccupied corner of the large family room and wait for the funeral home to arrive.
It's easy to imagine Mr. G. as the patriarch of this large, bustling family. I can see him sitting in his comfy chair, offering both advice and admonishment. As I watch the family mingle, I decide that he was a very good man.
Some of the family have divided into small conversational groups. The talk is soft and the laughter unobtrusive. Several bottles of wine have been uncorked. I hear from the kitchen:
"No, no. Leave her alone. You know she has to do this."
I see what's happening. Mrs G. is cooking. As though a prima ballerina, she moves gracefully from refrigerator to counter to stove. Never hesitating... never wondering what to do next. If Gordon Ramsey were in this kitchen, he would stay out of her way and actually keep his mouth shut. In short order, a large pot of fagiole is simmering on the stove. I am in awe.
The family, while very cordial, largely ignores me. I am not offended in the least. They don't need my comforting words, my shoulder to cry on or a hug. They just need me to take care of business. They are skillfully taking care of the rest.
The aroma from the kitchen is beginning to torment me. I wasn't hungry at all when I first arrived, but now I'm in agony with spasms of hunger mixed with twinges of envy. I want what they have. A little pasta fagiole and a large, loving family.
Saturday, July 19, 2008
1845 hrs -- I've just arrived at the home of the deceased. His tearful daughter and her boyfriend meet me outside. The daughter had come to the home to look in on her father and has found him dead. I go right in to examine the body.
He's sitting in a chair in front of the TV. I scan his immediate surroundings: Nice assortment of snack foods. Check. TV remote. Check. Oxygen. Check. Pitcher of water. Check. Bucket to pee in. Check. This man was exactly where he wanted to be and doing exactly what he wanted to do when he died. Well done, sir. I give him an imaginary, standing ovation.
"Could you please call my brother?", asks the daughter. "He's out of state, but he's always handled Dad's bills and stuff. He can tell you what funeral home to call."
"Sure, no problem," I reply. The patient's son answers the phone and I offer my condolences. He knows that his sister is in the home and immediately begins an anti-sister tirade:
"That woman has never cared about Dad", he rants. "All she's ever cared about is her booze and drugs!"
I look up at his sister. She's sitting quietly, wiping away her tears. Uncomfortable with the direction this is going, I steer the conversation toward the selection of a funeral home. He already has one picked out, but he does have some concerns:
"Will they let me see my dad before they cremate him?"
"Yes, yes of course", I reply. "That shouldn't be a problem at all. I'll make sure to tell the mortuary about your request when I call them."
"Well, how about this...", he responds. "I can be in (city name) by ten P.M. tomorrow night. How about if you just let him stay where he is, so I can see him?"
Okay... that's at least twenty-six hours from now. I rapidly begin a new checklist: This is so unethical. Check. Possibly illegal. Check. Corpse in very warm mobile home in middle of August. Check. I don't need to go any further...
"No, Mr. ( )", I reply. "I'll just call the funeral home."
The call has ended and I turn to the patient's daughter. I know that she has completely gotten the gist of this unusual conversation. "Thank you", she says softly. "Thank you so much for everything."
Driving out of the trailer park, I'm thinking about the patient's son. I wonder about his motivation to see his father, long dead, in a chair. Is it about love? Is it someway tied to his feelings about his sister? Is it... ? Is it... ? I'm giving myself a headache. I hope he has a checklist.
Tuesday, July 8, 2008
Friday, July 4, 2008
Thursday, July 3, 2008
Mrs. X has been admitted into the inpatient unit for "actively dying". She seems so close to death, but continues to surprise us with unexpected spurts of lucidity and well... life. One evening, the staff nearly pronounces her dead and the woman essentially snaps right out of it. The next morning, Mrs. X is sitting up in bed enjoying her breakfast.
This woman is the reason why I do not give families a firm prediction on life expectancy for their loved ones. I will give an estimate... but with plenty of disclaimers. Thankfully, the families/caregivers are overwhelmingly accepting of my vagueness.
Eventually, the hospice decides to send Mrs. X back home into the care of her children. The family is contacted in order to make arrangements and schedule her transportation. This plan comes to a screeching halt... The kids have rented out her room. The new tenant has not only already moved in, but is sleeping in the hospital bed that hospice had provided for her.
This is why hospices keep their social workers on speed dial.
Wednesday, July 2, 2008
The dying process is something quite foreign to most of us. Just a few generations ago, birth and death played out within the privacy of our homes. Extended families were present to comfort, celebrate and grieve. Nearly everyone knew what to expect.
Many of the calls I get are from caregivers who are panicked over symptoms that are quite normal for someone that is dying. It's okay... I truly understand. This is all strange to us now.
A person that is "actively dying" has made a noticeable transition. They are weakening; sleeping more and eating less (or not eating at all). They need more and more help from caregivers and may be bed-bound. Mental status becomes more "iffy". A fair prognosis would be that the patient has days, maybe even weeks to live.
A patient that is "imminent" is still, of course, considered "actively dying". But their condition has severely deteriorated. They may be semi-conscious/unconscious, confused and hallucinating (or, if you prefer, having "visions"). The ability to swallow is severely impaired. The patient may be anxious, restless or combative. Their breathing pattern has significantly changed. At this stage, one may have hours or days to live.
There are no hard rules for this process. Everyone experiences their death differently... dying is a very personal journey.