Myoclonus rarely seen in PSP

The most interesting part of this case report is that myoclonus (involuntary jerky movements) is rarely seen in progressive supranuclear palsy (PSP).  The abstract mentions that myoclonus “can be seen as part of later stage Parkinson’s disease and in multiple system atrophy.”  It is also seen in LBD (Lewy body dementia) and CBD (corticobasal degeneration).  Myoclonus is often a part of the differential diagnosis in PSP vs. CBD — since it doesn’t occur in PSP but does occur in CBD.

The case report is about a man with a clinical diagnosis of PSP who develops myoclonus after taking amantadine.  The myoclonus goes away when the medication is removed.

Here are the “key point” of the case report:

* “Myoclonus is a hyperkinetic movement disorder that can be described as a brief shock-like movement.”

* “Myoclonus can be seen in some parkinsonian disorders but is rare in progressive supranuclear palsy (PSP).”

* “Neuropsychiatric medications can precipitate myoclonus, and here we report amantadine-induced myoclonus in a patient with PSP.”

The abstract is copied below.



Age and Ageing. 2012 Mar 15. [Epub ahead of print]

Amantadine-induced myoclonus in a patient with progressive supranuclear palsy.

Yarnall AJ, Burn DJ.
Institute for Ageing and Health, Newcastle University, Newcastle upon Tyne, UK.

Progressive supranuclear palsy (PSP) is a tauopathy that generally results in a hypokinetic disorder. Treatment is largely symptomatic, with some small studies indicating a benefit with dopaminergic therapy. Myoclonus is a hyperkinetic disorder that can be seen as part of later stage Parkinson’s disease and in multiple system atrophy, but is rarely seen in PSP. Here we report a case of myoclonus precipitated by amantadine in a patient with PSP.

PMID:  #22421702  (see for this abstract only)

Autonomic testing to differentiate MSA and PD

This is a Mayo Rochester study of 10 people with a clinical diagnosis of Parkinson’s Disease (including the presence of all three cardinal features — resting tremor, bradykinesia, and rigidity) and 9 people with a clinical diagnosis of multiple system atrophy (including orthostatic hypotension or urinary incontinence, parkinsonism responding poorly to levodopa or cerebellar ataxia).

The authors note that specific autonomic tests are not part of the diagnostic criteria for multiple system atrophy (MSA).

The authors state:

“Our results are in keeping with previous data showing more widespread anhidrosis on TST [thermoregulatory sweat test] among MSA patients, and that this degree of anhidrosis distinguishes this disorder from PD. Similarly overall autonomic dysfunction, as indicated by the CASS score, was more severe and widespread in the MSA group versus the PD group supporting similar data from previous studies. These findings continue to support our previous assertions that the severity and distribution of autonomic dysfunction in MSA patients are useful clinical additions in distinguishing this disorder from PD.”

The authors conclude that the “thermoregulatory sweat test provides the best distinction between MSA and PD.” They also like the autonomic reflex screen (to generate the CASS score).

The authors also note that this study, in contrast to previous studies, found that I123 MIBG myocardial scintigraphy did not differentiate PD from MSA. However, they believe that MIBG may be a useful part of the testing program.

The abstract is below.


Journal of the Neurological Sciences. 2012 Mar 13. [Epub ahead of print]

The role of autonomic testing in the differentiation of Parkinson’s disease from multiple system atrophy.

Kimpinski K, Iodice V, Burton DD, Camilleri M, Mullan BP, Lipp A, Sandroni P, Gehrking TL, Sletten DM, Ahlskog JE, Fealey RD, Singer W, Low PA.
Department of Clinical Neurological Sciences, London Health Sciences Centre, University of Western Ontario, London, ON, Canada.

Differentiation of idiopathic Parkinson’s disease (PD) from multiple system atrophy (MSA) can be difficult. Methods devised to help distinguish the two disorders include standardized autonomic testing and cardiac imaging with iodine-123 meta-iodobenzylguanidine myocardial scintigraphy.

MSA patients had more severe adrenergic and overall autonomic dysfunction when compared to control and PD patients.

Area of anhidrosis on thermoregulatory sweat test was greater in MSA (67.4±12.42, p<0.001) versus PD patients (area of anhidrosis, 1.7±2.96).

Postganglionic cardiac sympathetic innervation (iodine-123 meta-iodobenzylguanidine) expressed as heart to mediastinal ratio was significantly lower in Parkinson’s disease patients (1.4±0.40, p=0.025) compared to controls (2.0±0.29), but not in multiple system atrophy (2.0±0.76).

These findings indicate that autonomic dysfunction is generalized and predominantly preganglionic in multiple system atrophy, and postganglionic in Parkinson’s disease.

In our hands the thermoregulatory sweat test provides the best distinction between MSA and PD. However further confirmatory studies using larger patient numbers are required. Currently a combination of clinical judgment and autonomic testing is recommended to help differentiate MSA and PD.

PubMed ID#: 22421352 (see for this abstract only)

Signs of dying, from Buddhist hospice

This very helpful article on the “signs of dying” from a Buddhist hospice organization includes “suggested cares” for each sign.  The authors intend for the article “to help the dying and their loved ones to understand and be prepared for these changes, in order to provide appropriate safe support and comfort holistically.”

The signs include:

* Physical Weakness / Lack of Energy / Loss of Interest in Everyday Things
* Withdrawal from Family and Friends / Increased Sleepiness / Coma
* Loss of Appetite
* Difficulty Swallowing
* Confusion
* Restlessness
* Elimination
* Body Temperature and Colour
* Breathing
* Unexpected Alertness and Increased Energy
* Signs of Imminent Death
* Clinical Death

This is well worth reading.


Signs of Dying with Suggested Cares
Amitabha Hospice

Appreciating the preciousness of human life, based on the understanding of one’s body constantly changing, ageing, moving toward death since birth and the uncertainty of life helps us appreciate life and prepare for death. It is natural for one’s body to decay especially when accelerated by disease processes. In the final stage when life-sustaining systems begin to shut down, physical, mental, emotional and spiritual changes may occur over weeks, days or hours. Each person’s experience is unique, but there are some general similarities.

The following is a very simple account of the normal changes that may occur in the final stage of living, commonly called “dying”, with some suggested ways of caring. It is intended to help the dying and their loved ones to understand and be prepared for these changes, in order to provide appropriate safe support and comfort holistically.

Physical Weakness / Lack of Energy / Loss of Interest in Everyday Things

As the body’s systems weaken less oxygen is available to the muscles, the life force weakens, and more effort is needed to complete everyday tasks and one may become embarrassed, discouraged, ambivalent, depressed, irritable and/or just naturally become more interested in matters that seem more important: matters of the mind, heart and spirit. This is often a time of self-examination, of questioning, of looking for the meaning of life.

Caregivers can best help by assisting the person with physical tasks, while being sensitive to their feelings, maintaining their dignity and attending to their comfort as much as possible, especially with regard to symptom control and protection from injury. Love and humour can take the tension away from a stressful situation. Laughter opens the heart and can free one to see past appearances and circumstances, leaving the burden of self and entering into a instant oneness with another, that is blissfully rewarding. Psychological and spiritual support means being along side as a good friend: patient, non-judgmental, compassionate, allowing the person’s own wisdom to evolve. When regrets appear, see them as lessons learned, encourage memories of meaningful events and practice rejoicing, by seeing the benefits of the kind actions of one’s life, allowing whatever faith, hope and love the person has, to exist and develop freely.

Withdrawal from Family and Friends / Increased Sleepiness / Coma

Neither family, friends nor wealth can be taken with us when we leave this world. Much of the packing it all up and leaving it behind is a solo job and one needs time and privacy to do it. Visitors can be very exhausting and the person may feel they have to entertain their guests even if they can’t get up out of bed. Too many visitors one day will often result in the person being more tired and/or more withdrawn the next day. Sometimes the person may sleep more, be difficult to arouse or uncommunicative. This may be due to disease processes, medication, or the person’s desire to withdraw from social contact. Simply being a loving presence near the person, holding their hand, sending loving thoughts, silently praying, meditating, just being there for them provides a comforting, safe and peaceful atmosphere that facilitates the person’s inner work. The caregiver should try to respect the person’s wishes and be aware of what personal desires come up in their own mind and how these can be addressed without disturbing the mind of the dying. Be careful of what you say over their body while the person is asleep or unconscious, they may hear you and it could upset them. Many people who have recovered from a coma (a state where there is no response to voice or touch stimuli, though eyes may still be open) have reported being aware of what others said and even thought in their presence.

Random jerks or twitches can be due to dreams or nightmares, you can reassure them with your kind tone of voice and/or a gentle touch on their hand or arm. The dying are very sensitive to what is communicated by the caregiver’s body, speech and mind and the caregiver can become more aware of reactions and messages from the person by watching and listening. The eyes, facial expressions, and breathing changes often indicate what the person is feeling or thinking. The reason why communication is possible on this level and why you can trust your deepest intuition is because the basic nature of every being is pure and knowing, as Christians may say God-like or as Buddhists say having all pervasive, indestructible wisdom nature. Awake or asleep this is always present and available if one is relaxed, open and receptive, but it is much more familiar and easy for those who are habituated to this awareness through meditation practice. The depth of one’s spiritual practice is communicated by its own power and has remarkable benefits for others. Stripped of dogma and doctrine, reputation and position, sex, age, and relationship, leaving one’s ‘self’ to enter nakedly with no agenda, into unity with the person, even for a brief moment liberates both parties from the bondage of duality temporally and is profoundly comforting.

Loss of Appetite

Food is a fuel that helps sustain life. As the digestive system gets weaker, food may become more of a discomfort than an enjoyment, some medications may change the tastes of food, and finally the energy required to process the food becomes greater than the energy derived it. Any of these may produce a loss of appetite. Eating habits change. The person may become overwhelmed by a “normal size” meal. He/she may take a few mouthfuls of their “favourite” meal and feel full. Small attractively presented meals may tempt them. But consider who is getting the satisfaction – family and friends who want to nourish their loved one, so that the person can get better and live longer? It’s often the hardest thing for the family to face; but the refusal to feed the body is not a refusal for nourishment. It is a sign that priorities have changed to nourishing the soul/spirit/mind. Forcing the person to eat or making them feel guilty if they don’t, only isolates and distances them even further. The person approaching death needs to know that it is OK not to eat. Respect and acceptance brings people closer together which comforts the dying person and the caregiver too.

Difficulty Swallowing

As the swallowing reflex weakens, swallowing becomes difficult. It may become frightening for the person to attempt to eat or drink or the person may be slipping into unconsciousness. It is best to offer very small amounts (half a teaspoon) and observe the throat to see if swallowing has taken place. Tolerance of food generally progresses from solid to soft to liquids (soups and dietary supplements), to ice chips and spooned or sucked water. It is safer to feed a person who is upright, but if the person is used to eating in an incumbent position, it is generally easier to swallow if their head is kept straight, not turned to the side. The sucking reflex seems to last a long time as the caregiver will see when attempting to clean the person’s mouth or teeth. Mouth care is important for comfort and dignity. Medications can be crushed and capsules opened and mixed with jam, jelly, yoghurt or like foods. Do not crush time-release or long acting medications. Discuss with your nurse or doctor any problems with medications; alternative medications or modes of delivery are available. Do not give food or liquids to a person who is unconscious. It may cause the person to choke or to inhale the foreign matter.


The level of awareness and cognition can change frequently and unexpectedly, due to many causes (i.e. disease processes, tiredness, medication). When a person becomes confused, there can be a decrease of oxygen to the brain and they may not recognise familiar people, places, the time of day or year etc. or they may hear voices or see visions. Do not negate what they say or argue with them. This is their personal reality, which can be a pleasant comforting experience for the person and could also be a sign that the person’s mind is peaceful or joyful with happy expectation. But if their experience upsets or disturbs them, gently touch or stroke their arm or hold their hand and speak calmly with a soft reassuring voice and remind them of who you are, where they are, what day it is etc. Aromatherapy and their favourite music or chanting of their faith, is also helpful.


A person may become restlessness and make repetitive motions like picking at the bed linen, their clothing or the air. This can be a sign of less oxygen available in the brain or of being distressed due to having pain, nausea, constipation or a full bladder or could be due to being confused or anxious about something. Or if the person is throwing or kicking bed covers off even in a cool room, it can be the first stage of the death process when one feels like being buried under a great weight. Before rushing in to do something about it, be calm and still. Observe and listen with your mind and heart to what the person could need. Do not try to interfere with their restless motions but protect from injury and check out the physical side first. Pain doesn’t conform to schedules. After the physical problems are controlled, by using a soothing voice, remind them of their goodness and virtues, along with music, aromatherapy or reciting the person’s favourite spiritual practice may help calm and reassure them. Likewise one can distract the person’s mind away from the disturbing thought or nightmare even if the person is unconscious by verbally describing a favourite place or special experience. And even simply by giving the person assurance that it is OK ‘to let go’, could address the real problem that the person is unable to articulate.

Restlessness can also be a sign of spiritual crisis which needs urgent attention, not waiting for the minister or religious person although they could of course be called to attend, but there is no time to lose, one needs to know what the dying person believes or what prayers or meditations practices that they do and also to remind them of the positive things that they have done in their life, remind them of their faith, their heaven or Amitabha pure land, recite these prayers etc for them and whether the person has religious belief or no faith, he or she can be encouraged to generate universal love and to feel and be that love (forgiving oneself and all others and to generate love and good-will for all without exception). Universal Love replaces fear with calm and confidence.


As the person gets weaker and is no longer able to get out of bed, the muscles that control the bowel and bladder may relax and “incontinence” or involuntary loss of urine or faeces may occur. Often the person will feel embarrassed and/or may awaken if asleep. Attend to them with dignity and respect and avoid exposing their private parts to others. Its important to keep the skin clean and dry or the skin could develop a rash or open sores and cause more discomfort. Use plastic gloves and soap and water or a disposable skin wipe. Often when a person needs a bowel movement they will get grumpy, irritable or restless. It’s a good idea to keep a record of the bowel movements to tell the nurse or doctor. One can’t expect a normal daily bowel motion but too many days between eliminations can signal a problem. However, with little food intake there is less reason for a bowel motion.

As the kidneys shut down and the skin takes on more elimination work; the person may experience itching over different parts of their body and also combined with increased sweating from failing thermal regulators it is difficult to provide comfort. Different things work for different people: some like warm bed baths, others cool tepid sponging, or even a cool compress to the forehead and pulse areas can cool down and soothe. Tea tree oil, calendula or lavender oils or other commercial products can give relief, but usually strong perfumes are not tolerated. Change the bed linen if soiled with sweat. This is a good opportunity to give a back rub and reposition the person into a more comfortable position.

Body Temperature and Colour

Mechanisms that control the body’s ability to control its temperature will start failing. The skin may sweat and still be very cool or may be hot. The person may kick off the bed linen but be cold to touch. As the heart becomes weaker, circulation fails to adequately reach the hands and feet and they will become cool to touch and the nails maybe bluish, while the arms and legs maybe pale, grey, mottled or purplish. At this time its best to follow the wishes of the dying to keep them comfortable even if it’s against reason (like trying to keep a person covered when they keep kicking the blankets off). However it’s important to avoid drafts that may cause the body’s temperature to fall too fast and cause shivering. Normally, repositioning is advised every 3-5 hrs, but closely monitor whether it becomes too painful to turn or if one position is not tolerated. If possible give extra pain relief before a necessary turn (like when cleaning incontinence). If close to death it is not necessary to turn for circulation. It is only necessary to turn the patient if it helps breathing or provides more comfort. Always observe how well a person settles into a new position and if they don’t settle, try another position, or gently return them to the previous position, and/or give pain relief. This is a difficult judgement that can be a great challenge for the caregiver because things are always changing. One position favoured one day will not necessarily be tolerated the next day. A loose sheet from the shoulders to the knees (called a “draw sheet”), under the person’s body will help turn or lift the person up the bed (One person on each side of the bed, holding their side of the sheet, rolled up close to the body).


If breathing is difficult with or without oxygen being given, sometimes a fan blown over the body to give the sensation of being in fresh air, combined with the mental suggestion of visualising sitting on a beach in the wind or the top of a high hill can give relief. Keeping the head elevated will help breathing, be careful to maintain support of the lower back. A lubricant on the lips will help prevent cracking. And mouth care with mouth swabs can help keep the tongue and mouth moist and less dirty. Although this will not be necessary or may not be tolerated by someone close to death.

A change in breathing pattern is significant during the dying process. When the exhalation (out-breath) is longer than the inhalation (in-breath) this is a sign that the dying process has begun (even weeks before actual death). Next the breathing becomes irregular, although irregular breathing can occur at anytime when someone has a lung condition that causes shortness of breath. Closer to death, the breathing involves the whole rib cage and is fast (up to 30-50 breaths per minute) mostly through the mouth and then may pause for even 10-15 seconds before the next in-breath. This period of no breathing is called “apnoea”. This pattern (called Cheyne-Stokes breathing) of shallow quick breaths followed by spaces of no breathing can continue for a few days, hours or minutes before the person actually stops breathing, but rarely does a person improve from this stage.

There may be a rattling noise (often called the “death rattle”) at the back of the throat, caused by the accumulation of saliva because the person can no longer swallow. This is often distressing for the helpers but it doesn’t seem to bother the dying person. The pool of secretions is too far down the throat to be suctioned. Sometimes turning the person with their head to the side can help drain the secretions from their mouth. Dying people breath better when they are not completely lying on their side, as a health person would sleep. Lying towards the right side is favoured because the heart is not obstructed and according to Buddhist medicine it supports a happy peaceful mind, by blocking the right channel. The Buddha passed away lying on his right side. Buddhist scriptures say to block the right nostril with the ring finger, face resting on the right hand. But if there is a medical reason or the person just can’t tolerate the right side, comfort is the priority, to keep the person’s mind happy.

Unexpected Alertness and Increased Energy

Often a day or two or even a few hours before death, the person has a surge of energy, wakes up, becomes alert, can sometimes eat or talk and can spend some quality time with loved ones. This is a very special time for final spiritual practices and mental preparations, which can be shared with loved ones if it is the dying persons wish. This is a very precious time because it normally doesn’t last long, as most people become unconscious (unresponsive) hours or days before they stop breathing.

Signs of Imminent Death

Eyes have glassy fixed stare with large pupils
Pasty grey, or blue greyish colour present especially on lips, hands and feet
Hands and feet can be cold
Jaw open, breathing through mouth very rapid or very slow (often with rattle) with pauses of 20-50 seconds between breaths
Unresponsive to voice or pain

It is most important not to do or say anything that might disturb or anger the person, like speaking abruptly, arguing, crying, rough handling; maintain a peaceful atmosphere with people praying, meditating or chanting according to the dying person’s wishes or as instructed by their spiritual guide/teacher. Any supporters can generate limitless universal or devotion in their hearts and the wish for the dying person to be released from suffering with this love or devotion/faith and become unified with love, with god or with their source of inspiration and virtue.

Clinical Death

No breathing (chest does not move)
No heart beat (no pulse)
Pupils large, do not change
Sometimes release of bowel or bladder

According to Buddhism, death is a process with stages: after conception, formation proceeds from subtler to grosser, but at death there is dissolution from grosser to subtler. The four elements: earth (hard substances of the body), water (fluids), fire (heat), wind/air (energy, movement) degenerate and dissolve in sequence and there are external signs and internal visions at each stage. In the final stage of death all the gross consciousnesses dissolve into the emptiness of clear light, where with previous training one can discover the fundamental innate reality. Because of this continuity of mind moments, the state of mind at the time of death is vitally important, it’s most important to die with a calm and peaceful mind; with strong spiritual/ positive thoughts prevailing.

Friends and family can best help the dying continue their journey after “clinical death” by generating calm, accepting, supportive thoughts for the deceased, each other and expanding into altruistic, universal good-will and love through their prayers and meditations. Buddhist masters recommend maintaining a peaceful atmosphere and if possible allowing the death process to proceed undisturbed, by not touching the body until all the heat has left (indicating that the most subtle consciousness has left the body). If the body needs to be cleaned or moved it is advised to touch the top of the head first so that the consciousness abiding in the heart chakra becomes aware of this and leaves the body through the crown. Beginning with the facial muscles, “Rigor Mortis” (Latin for stiffness of death) develops, then wanes from 3 hrs to 36 hrs depending on muscle mass and environmental conditions, (cold retards rigor mortis) with a maximum stiffness at 12-24 hrs. If there is not too much disease, physical damage or medication in the body, a small amount of blood leaves from the nose and a small amount of white fluid leaves from the sexual organ, which is a certain sign that the most subtle consciousness has left. This can take up to 3 days and even longer in documented cases of very accomplished meditators. According to Buddhist texts, death is the separation of body (physical form) and “mind” formless, clear, luminous and knowing. (Only the most subtle level of mind transmigrates.) After the consciousness leaves, the body will soon begin to smell from the decomposing process and all that is left is a corpse.

Further Reading:

Advice on Dying by His Holiness the Dalai Lama
Advice and Practices for Death and Dying for the Benefit of Self and Others
by Lama Zopa Rinpoche
An Overview of the Bardo Teachings by Khenchen Thrangu Rinpoche
Facing Death and Finding Hope by Christine Longaker
Good Life, Good Death by Gehlek Rimpoche
How We Die by Sherwin B. Nuland, MD
Journey of the Mind, Teachings on the Bardo by Khenchen Thrangu Rinpoche
Making Friends with Death by Judith Lief
Sleeping, Dreaming and Dying edited by Francisco J. Varela, Ph.D

Oregon “Death with Dignity” Advocate Dies with CBD

A local support group member forwarded me this info about a retired Oregon MD diagnosed in 2006 with corticobasal degeneration, who died last Sunday, assisted by Oregon’s Death With Dignity Act, which he had championed:

Might you have heard about the death of Dr. Peter Goodwin of Portland, OR?

He is referred to as the Father of the Oregon “Death with Dignity” law, or assisted suicide, that allows a terminally ill patient to take their own life with the help of lethal meds supplied by a Doctor. The Oregon law was passed about 17 yrs ago.

He had been diagnosed in 2006 with CBS, and chose to end his life this past Sunday, 3/11/12, at 83 yrs old.

Google “Dr. Peter Goodwin” and you will find many sites about his work, and his passing. Here is one site that includes an interview with him: … -10391704/

(This is Robin, again….)

In the video interview with Dr. Goodwin, produced by the organization Compassion & Choices, he explains that he’s been diagnosed with a “terminal illness” for which there is “no treatment.” (2:04) He says that he’s discussed his decision to die with dignity with his four children, all of whom are “regretful but supportive.”

I don’t know many with CBD with this level of clarity and speaking ability six years after a diagnosis.

“Types of Care”- adult day programs, care facilities, etc.

This post is probably of interest to newcomers to our group or those facing new declines who need to know their options for care.

A recent CurePSP ( magazine article describes types of care, including:

* adult day programs
* rehabilitation, including in-home therapy
* in-home care
* long-term care facilities
* vial of life

Although this article on types of care was published a magazine for those dealing with progressive supranuclear palsy (PSP), the list of care options is not PSP-specific.


—————————————  –> article starts on page 2

Types of Care
Diane B. Breslow, MSW, LCSW, Northwestern Medicine Parkinson’s Disease and Movement Disorders Center
CurePSP Newsletter
March/April 2012

What follows is an overview of the spectrum of care for adults with physical impairments or chronic disease. Although not PSP-specific, all of the levels discussed are potentially appropriate for people with PSP. That said, it is most important and acceptable for family caregivers to inquire as to a staff’s experience with PSP. Family members can and should make providers aware of the symptoms and needs of PSP patients, and offer to ascertain PSP educational materials, speakers, and in-service training for staffs.

Older-adult day programs (also referred to as adult day care centers) are community-based, day-long social and recreational programs provided in a safe, secure group setting. Participants typically exhibit cognitive, social, and/or functional limitations, and therefore require the supervision and structure that adult day programs provide. Most programs also offer some health-related services, such as medication reminders. Other features of adult day programs include transportation, exercise, social work services, lunch/snack, socialization and peer support, on-site/on-call nurses, and assistance with or supervision of eating, walking, and toileting.  In addition to the benefits to participants, adult day programs afford family caregivers a respite from the demands of full-time caregiving for someone who needs constant supervision. Services and fees for adult day vary from program to program, and state-to-state.

Even with a degenerative disorder such as PSP, rehabilitation therapies can offer helpful safety instructions and can help to re-stabilize an individual’s functioning. The skilled rehabilitation therapies of physical therapy, occupational therapy, and speech therapy are provided in multiple different settings: day treatment centers, one’s home, in-patient units of rehabilitation institutions, and out-patient centers. Skilled therapy is an order prescribed by a physician; in the case of PSP, either the movement disorders neurologist or physiatrist (rehabilitation physician) would write the order. Therapy is covered by Medicare and other health insurance companies, so long as the person is not already receiving insurance-covered therapies in more than one setting at the same time.

In-patient rehabilitation – large, dedicated rehabilitation institutions offer in-patient rehab stays as well as all other levels of rehab treatment. To qualify for an in-patient rehab unit, one must meet specific criteria related to the ability to participate in and benefit from daily, intensive, multiple therapy sessions.

Day rehabilitation programs – In addition to offering in-patient and out-patient rehabilitation, some rehabilitation institutions also offer Day Rehabilitation: a concentrated, rather intense, community-based, day-long treatment program that encompasses all of the skilled rehabilitation therapies: occupational therapy, physical therapy, and speech therapy. To qualify, a patient must be able to undertake 3 hours of therapies each day.

Out-patient therapy ­ this is provided in a community clinic setting. Therefore, the patient must be able to leave the home for therapy. Unlike day rehabilitation, out-patient therapy implies that one is receiving one-hour sessions of physical, speech, or occupational therapy.

In-home therapy ­ this refers to physician-ordered, skilled, rehabilitation therapy — speech, physical, or occupational — for patients who are home-bound and unable to travel to an out-patient therapy setting. A registered nurse usually oversees the home rehabilitation care. During the time that a case is open for home rehab, the patient is also eligible to receive a bath aide. However, once the course of rehabilitation ends, so too does the bath service.

In-home care refers to personal care with activities of daily living, such as bathing, grooming, and dressing. In-home care providers are also called companions, personal aides, or personal caregivers. They work either for themselves privately, or for an agency that takes responsibility for setting fees, making caregiving assignments, insuring and bonding the caregivers, and training them. In-home caregivers can be employed by task, e.g. bathing assistance, or by blocks of time, e.g. 4 hours or 8 hours or even live-in. For the most part, personal care is a private expense. Medicare or health insurance does not cover it; however, it may be covered by one’s long-term care insurance policy. Most states, through their local area agencies on aging, offer a capped number of hours of companion services to older adults.

Long-term care facilities are listed on a spectrum from most to least independent.

Independent living is a broad term that encompasses senior apartments, active communities, and retirement homes. These types of buildings are not licensed to provide personal care or nursing services, although residents can and do contract for private duty care just as they would in their own home or apartment (See in-home care section). All of these more independent facilities offer amenities such as 24-hour security, transportation, and activity programs. Whereas senior apartments and active communities may not serve meals in a central dining room, retirement homes usually do have group dining.

Assisted living refers to an entire building, or a specified part of a building, that is licensed to provide personal care 24 hours/day. Caregivers are trained, certified aides who assist with daily tasks such as bathing, dressing, escort to meals, medication set-up and dispensing, and routine checks on residents. A registered nurse sets up and stores a person’s medications, and an aide can deliver the medicines to the resident. Assisted living also provides housekeeping and social programs, as well as transportation to and from medical appointments, errands, and group outings. Some facilities may offer rehabilitation therapies, hospice care, and specialized care for different disorders.

Continuing Care Retirement Communities (CCRCs) are residential, gate-secured campuses that, with a substantial entrance fee, guarantee lifelong care beginning with independent living (cottages or apartments) and progressing on to assisted living and then skilled (nursing home) care.

Nursing homes are institutions that are licensed and regulated by state and federal governments to provide skilled care twenty-four hours a day. Registered nurses are on-duty around the clock, as are certified nurses’ aides. Physicians serve as medical directors of skilled care facilities. Everything from activities to nutrition, personal care, environmental safety, staff-to-resident ratios, etc. must meet state and federal guidelines. Within a nursing home facility, there are also levels of care. Some residents require only “custodial care,” or personal care with their activities of daily living such as bathing, dressing, or toileting. Other residents require the services of a nurse for the skilled care of wounds, intravenous medications or feedings, or managing of machinery such as respirator or ventilator. Medicare and supplemental insurance policies cover 100 days of nursing home care that results from a hospitalization and meets the criteria for rehabilitation therapies. After the rehab portion of the stay, residents pay privately and/or by means of their long-term care insurance.

Palliative or hospice care is compassionate, supportive, interdisciplinary end-of-life care for patient and family. Such care can occur in one’s home, in a long-term care facility (nursing home), in an in-patient hospital unit, or in a free-standing dedicated hospice building. In order to receive hospice care, one must have a physician’s order, followed by an evaluation by the hospice nurse or doctor. Hospice care is covered by Medicare.

No matter where your loved ones live or participate in programs such as those described here, they should always keep with them, or in a specified location in their living space, a “Vial of Life.” This paper, which some people roll up and keep in a bottle in their refrigerator ­ hence “Vial of Life” ­ should contain the following information:

• Date updated
• Name, address, phone number
• Medications/dosages/frequency or times
• Drug allergies
• Medical conditions
• Surgeries (including year)
• Blood type
• Power of attorney for healthcare
• Two emergency contacts

Because information can change, you should regularly review and update the Vial of Life.