Tag Archives: quality of life

Caregifted: Respite for Long Term Caregivers

HEATHER_MCHUGH-John-D.-and-Catherine-T-MacArthur-Foundation-261x326McArthur Foundation Fellow and poet, Heather McHugh, decided to use her McArthur award money to start a non-profit respite program for family caregivers who have been caring for a disabled person in their homes for 10 years or more.  She calls her organization Caregifted.  Caregivers who qualify submit a simple application and a medical certification of the care receiver’s need for care.  Ten caregivers each year are given week long respite trips, and the Caregifted website relates their experiences and what the week of respite means to them.

McHugh reports that a family close to her and caring for a child with disabilities made her aware of the unremitting tasks that claim the parents’ attention.  This was the inspiration for Caregifted.  I am inspired by the creativity that McHugh and her colleagues have brought to the organization.  Fund raising includes an auction of art works and a literary review. Additionally, the organization is producing a documentary on long term caregivers entitled Unsung.  Snippets of the film footage can be viewed here.  By any measure, McHugh has been successful as a poet and academic, yet she decided later in life to offer a service very little related to her earlier career path. This endeavor illustrates to me that, regardless of stage in life, we can all find ways to collaborate with like-minded others and apply our talents to improve lives and make a unique contribution.CaregifredLogo

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National Healthcare Decisions Day – April 16, 2015

Refusal of TreatmentApril 16th this year is National Healthcare Decisions Day (NHDD), which is a day to think about and prepare or update your advanced directives for healthcare.  It’s a great gift to your family and friends to let them know your wishes in case of health crises in which you may not be able to speak for yourself.  It’s comforting to you to know that you’ve discussed the circumstances and interventions that would fit with your values and desires for your future.  It reduces family discord to have a designated patient advocate who has a written document with your decisions about treatment.  It’s also hard to think about and talk about such frightening eventualities.

There is a website about NHDD that helps make it easier to undertake those conversations and to execute the relevant documents.   It lists a number of websites in which to find state-specific advanced directives forms.  It also has links to many sites that help facilitate family conversations about health crises and each person’s wishes, including some card games and a phone app to store advanced directives for yourself and loved ones.

commlaw-aging-v-blackThe American Bar Association’s Commission on Law and Aging also has a number of helpful resources on preparing advanced directives and serving as a patient advocate.  There’s a guide to completing a universal health care power of attorney form, a guide to making medical decisions for another, and a toolkit that invites you to think about the various factors involved in coming to a decision about your possible care if you were faced with a serious medical condition.

Try not to put it off again this year.  My colleagues in the senior ER are begging us all to help them to help us and our families go through such harrowing experiences in a way that honors the person at risk and helps us all have greater peace of mind.

Sue Sweeney, Chair, Department of Aging Studies, Madonna University

What “Ego Integrity” Looks Like

Erik Erikson

You have probably encountered Erik Erikson’s theory of psychosocial development, in which he posits eight epigenetic stages.  In each stage a developmental crisis must be positively resolved for optimal further growth to occur.  The final crisis occurs in late life, in which a person faces mortality and examines his or her life.  This life review can result in either ego integrity, a sense of appreciation for one’s life as lived, or in despair, a sense of regret and disappointment over the outcomes of one’s life.

In teaching adult development, I’ve found it much easier to convey the experience of despair.  Students seem to understand that a person could look back over her lifetime and conclude that she had not accomplished enough, had made bad choices, or harmed others unnecessarily.  Getting across the experience of ego integrity has been less successful.  Feeling a sense of satisfaction seems a pale accomplishment in contrast to the wrenching feeling of despair.  Then I read a brief essay in the New York Times online edition by neurologist and author Oliver Sacks.

Oliver Sacks

Among other writings, Dr. Sacks has written numerous very readable books about how people experience and adapt to unusual neurological phenomena and pathologies.  He is 81 and describes himself as robust.  However, he recently learned that he has metastatic and terminal cancer from a rare tumor he’d thought had been cured nine years ago.  The article, entitled, “My Own Life”, contains what I consider an eloquent representation of ego integrity.  It contains  a deeply genuine expression of expansiveness, individuality, and aliveness in the face of impending death.  He ends his essay with this observation, “Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

I urge you to read his moving essay.  To me it contains inspiration that each of us may reach the end of our lives  with a measure of authenticity, clarity, and gratitude.  It also conveys a sense of celebration of a life well-lived.  That’s the kind of ego integrity I hope to accomplish and wish for all of us!

Sue Sweeney, Chair, Department of Aging Studies, Madonna University

World Elder Abuse Awareness Day – June 15th

Elder abuse is a violation of human rights and a significant cause of illness, injury, loss of productivity, isolation, and despair. – World Health Organization, United Nations

Because of the increasing older adult world population and because the oldest old group is growing the fastest, the prevalence of elder abuse is increasing.  In 2006, the International Network for the Prevention of Elder Abuse and the World Health Organization at the United Nations designated June 15th as World Elder Abuse Awareness Day.  Since then, the U.S. Administration on Aging (now the Administration for Community Living or ACL), has recognized the day and has used the event to encourage organizations throughouACL_HeaderLogot the country to promote prevention of elder abuse.  This year the ACL has issued a useful publication in .pdf entitled, “How to Answer Those Tough Questions About Elder Abuse”.  It provides information about the nature of the problem and how to address it at individual and organizational levels.

Elder abuse takes many forms.  It can involve neglect (failure to provide for the basic necessities of life or to respond to potentially harmful situations); emotional abuse (in which a person is harassed or demeaned); physical abuse (in which a person’ health or welfare is harmed or they are given inappropriate medications or substances); sexual abuse (unwanted, intimate touching or looking); exploitation (involving improper use of an individual’s finances, property or personal dignity); or self-neglect (in which a person does not care for him- or herself so as to avoid harm).

In all cases, if the person at risk is able to understand the consequences of continuing abuse, then they have a right to refuse intervention if they choose.  However, I believe that means thoroughly discussing all the possible outcomes of staying in the abusing situation, so that the person wishing to intervene is absolutely clear that the person at risk is making an informed choice. It also means discussing alternatives, so that the person at risk knows what shelter, protection, benefits and services they may reasonably be able to employ in order to improve their life situation.  Abused adults often refuse help out of shame, the belief that they are to blame for the abuse, fear of retaliation, psychological denial of the abuse, and/or the fear of going from one bad situation to another.  Without information about housing, services, financial support, transportation, and protection, the abused individual can’t make a rational judgement about whether there is any expectation that their basic needs can otherwise be met.

ncea_logoMost states have laws addressing elder abuse. The National Center on Elder Abuse (NCEA) has a helpful resource for finding out about reporting and laws in a given state or territory.  In Michigan, elder abuse is covered under the Public Act 175 of 2012 [Social Welfare Act, MCL 400.11(b)].  Many groups of professionals are required by law to report suspected abuse in Michigan:  individuals involved in health care services, educational services, social welfare providers, mental health services, any other human services, law enforcement officers, and county medical examiners and their employees.  The Department of Human Services will maintain the reporter’s anonymity, unless legally required to divulge it. How do you know when elder abuse may be occurring?  The NCEA has another useful document called, “Red Flags of Abuse”, which describes behaviors and signs that suggest the likelihood of neglect, abuse, or exploitation.

Elder abuse is grossly under reported.  Those who are abused are intimidated or unable to report.  They may already feel unworthy of better treatment because of internalized ageism and may be emotionally attached to the abusive situation due to the Stockholm syndrome.  Most of the rest of us don’t want to believe it can be happening around us.  However, the most common perpetrator of elder abuse is a friend or relative.  We need to be more aware of this problem and its signs, and report suspected abuse.

In Michigan, notify the Department of Human Services (DHS), Adult Protective Services: http://www.michigan.gov/dhs  Statewide 24-Hour Hotline:   1-855-444-3911

If you suspect abuse, neglect or exploitation of a resident of a nursing home by another resident or by a nursing home employee, notify:   Bureau of Health Services Abuse Hotline: 1-800-882-6006

Michigan Protection and Advocacy Service, Inc.:  Developmental Disabilities:  1-800-288-5923
Mental Illness:  1-800-288-5923

Attorney General 24-hour Health Care Fraud Hotline: 1-800-24-ABUSE / 1-800-242-2873

Sue Sweeney, Chair, Department of Aging Studies, Madonna University

Spiritual Advantages of Later Life

ClockSpiralBelow is the link to an expanded version of the PowerPoint presentation I used in an interactive discussion with a church group about spiritual growth in older age.  It seems to me that there are certain inevitabilities about aging that transcend societies and cultures: a shortening of time perspective, the accumulated lifetime experience, and eventual physical decline .  How we respond to these inevitabilities will be affected by our world view.  In our culture another inevitability makes the experience of aging more harrowing, and that is pervasive and unconscious ageism.

These inevitabilities invite us to undertake a number of developmental tasks to respond and adapt.  The tasks include self-esteem regulation, managing our foreshortened time span, coming to terms with decline, dealing with dependence, facing death, relating to unfinished business, and leaving a legacy.  Inherent in these challenges are opportunities for spiritual growth, which our limited time perspective calls for us to use.  We can learn to be more patient, to be less petty, to let go of old hurts and resentments, to fully appreciate the present moment, to take on social roles that befit us as elders with a lifetime of experience, to view ourselves as a part of a whole, and much more.  Our need for spiritual stamina increases as we age, as does our ability to share our hard-won spiritual achievements with others.

For each task, I have suggested some opportunities, some tools for exploring them, and ideas for sharing each person’s journey with others.  Finally, several resources are listed that can assist with a number of these challenges.

The Spiritual Advantages of Later LifeExpandedPub1–14

Sue Sweeney, Chair, Gerontology Department, Madonna University

America’s Oldest Teacher

I recently read an article about an exceptional nursing home that excels in care of persons with dementia.  One of the staff was quoted as say, “when I get dementia, I want….”  Maybe she thinks in terms of the inevitability of cognitive impairment because of working in memory care or maybe she thinks that way to reduce emotional distance from the residents with dementia.   However, I got mentally stuck when I read that quotation.  I realized that I don’t want to believe that cognitive impairment is inevitable.  I’d rather aim for clear thinking and functional memory for as long as I live. That’s why I cherish the models of very old people who continue to grow intellectually and challenge themselves.

Agnes Zhelesnik's 100th Birthday Party

Agnes Zhelesnik’s 100th Birthday Party

Agnes Zhelesnik is a case in point.  At 100 years of age, she’s teaching home economics full time at Sundance Elementary School in New Jersey.  She got bored with playing bridge, so she found her present job at age 81.  She hasn’t even called in sick in the last two years.  I believe that a deep sense of purpose and meaningful pursuits help us to remain healthier, live more happily, and ultimately live longer.  I want to be like Agnes!  Sue Sweeney, Chair, Gerontology Department, Madonna University

Ways to Engage Persons With Dementia

Art suppliesPeople with dementia are often unable to keep themselves occupied because of the effects of the disease.  They may not be able to call to mind the possible things to do in any given moment.  If they can think of things to do, they may not be able to figure out the sequence of steps to accomplish the goal.  They may not be able to initiate an action, or the tasks needed to find and gather supplies or tools may be overwhelming.  However, individuals with cognitive impairment need stimulation and challenge to retain remaining function as long as possible, to improve or retain self-esteem, and to retain or improve quality of life.

In a residential setting, the person with dementia has the opportunity to watch others’ behavior or to interact with others in their environment.  They can be invited to a group activity conducted by one caregiver, while others prepare for a meal or attend to individual needs.  In a family setting, the caregiver may be occupied with housekeeping and meal preparation, while the affected person sits idly by.  In either case, the television can be an easy substitute for interaction and stimulation, but it, too, can become isolating and tedious when overused.

As with any aspect of dementia care, knowledge of the person and of the disease process is essential in designing and carrying out effective activities.  The project should be meaningful to the participant, often relating to hobbies, interests, or vocation from earlier in life.  The goal of the activity is engaged enjoyment, rather than achievement of a purpose or product.  Sometimes that’s hard to gauge in a person with dementia. If the person is willingly participating and gives sustained attention, it’s probably a success.  Asking questions, reminiscing, staying on task, looking for appropriate items or pieces, erect body posture, appropriate bodily movements, or an intent or relaxed facial expression are all indicators of engagement.  The signs of engagement may be very subtle.  In a dementia residence in which a singer was performing Elvis Presley songs, I watched a woman sitting glumly in her chair with her head down.  I thought that the music was lost on her, until I noticed that her toe was keeping time to the rhythm.  I caught her eye and smiled, then started singing.  She began singing with me!

Don’t expect the same activity to be well received every time.  A repertoire of pastimes is needed to meet the person where they are at the moment.  Because of a bad night, an activity which requires more concentration may not be fitting.  The time of day can dictate the appropriateness of a given pursuit.  Some people are more energetic in the morning, while others take much longer to get going.  Late afternoon and early evening may be a time for soothing music and a back rub, especially if the person is prone to the agitation that comes with sundowning.  What was a favorite activity for a long time, can become frustrating a year or so later when the disease has progressed and the person’s abilities have changed.  That activity may need to be broken down in to smaller, doable steps or modified so that the challenge is lessened.

Even though persons with dementia have limited abilities, they have the need to feel useful and contributing.  Introducing ways that they can make a contribution helps maintain their sense of self esteem and self worth.  Drawing on skills cultivated in the past, a person may be able to put stamps on envelopes, to fold clean clothing, to set the table, to sand wood, to mix cake batter, to cut out coupons, to sort objects or other aspects of daily life.  The caregiver needs to remember that the process is what is primary.  If the folded clothing are not as neat or the fork and knife are not placed properly on the table, that’s immaterial if the person enjoyed the task and felt useful.  Knowing the person and the disease process also helps assess the safety of the process.  One person with dementia may be able to use scissors or a paring knife, while another person, or the same person in later stages of the illness, may not be able to do so safely.

We all relate to the different aspects of our selves:  physical, intellectual, emotional, social, and spiritual.  Persons who suffer cognitive impairment also possess all of those human elements.  Accordingly, they need opportunities to connect with and express those parts of themselves. Again, the ways that they did so in the past can guide the caregiver to devising experiences that will be meaningful in the present.  If the person had been a churchgoer, forms of spirituality that the individual encountered in church will probably touch him or her, such as formal prayer, rituals related to religious observances, and religious holiday traditions.  Others may find spiritual fulfillment in photos of nature, poetry, or music.  The physical self can be addressed through sensory stimulation (such as aroma therapy, viewing art, tasting various foods, or a hand massage), through exercise appropriate to the person’s abilities, or through gardening or tending house plants.

The emotional aspect of self can be engaged while viewing and discussing an epic film, such as Gone With the Wind, through listening to a good story, and through reminiscing about family or important milestones in the past.  Social needs can be met by participating in an adult day program, having a visit from friends or family members, looking at family albums or video while talking about the people depicted, or playing with a pet.  And intellect can be stimulated during all of the above activities, as well as puzzles, card games, sorting objects, discussing the news, playing trivia games, making crafts, or doing art.

Persons with dementia seem to be particularly attuned to music and art,  perhaps because these stimuli are processed more by the right hemisphere and sub-cortical brain structures.  Their enjoyment is also non-verbal and subjective.  It is not uncommon to find that a cognitively impaired person who had been a musician but can now barely speak, can still sit at the piano or other instrument and play nearly as well as in the past.  Or to encounter an individual who had not spoken for some time singing along with a favorite tune from the past.  Persons with dementia, who had not seemed particularly artistic in earlier life, can become avid artists after discovering painting or collage or pottery in later years.  When given an iPod, Henry’s response to music is remarkable, as recorded in the YouTube video, narrated by Oliver Sacks: http://www.youtube.com/watch?v=5FWn4JB2YLU

Teepa Snow has published a useful essay, “Activities for People With Dementia”, which includes good points on matching the task to the individual and sample activity schedules for three demented individuals with different needs and abilities.  Another helpful resource is a brochure from the Alzheimer’s Association called “Activities at Home”,  which offers good advice on activity planning.  By using imagination and forethought, there are thousands of things a caregiver can do to engage a person with cognitive impairment.  This link from the Alzheimer’s Association can get you started, with “101 Activities”.

Like Henry,  persons dealing with cognitive impairment often have areas of ability that are preserved but undetected.  They have talents and awareness that are not expressed because there is no opportunity for them to appear.  There is still a human soul  “in there”, and our efforts to engage the whole person can reward us with startling glimpses of the person that remains and the spark of life that animates all of us.  Sue Sweeney, Chair, Gerontology Department, Madonna University