Fun-filled Funereal Facts

Terminal Restlessness

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

inclusive list:

• 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. 

Fun-filled Funereal Facts

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.