Category Archives: Family/Informal Caregivers

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

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

Inner Work of Dementia Caregiving

NautilusXSectionI wrote this essay a few years ago, but I think it’s still very relevant.  I recently read that it’s most often the caregiver that needs to change in order to make the arrangement work, rather than the care receiver.  That’s even more salient when the care receiver experiences dementia.  The inner work of dementia caregiving relates to the techniques and approaches that one can use to be less stressed and more open to the experiences that such caregiving affords.

The Inner Work of Dementia Caregiving

Caring for a person with dementia provides an opportunity for considerable inner work.  Since the caregiver often has little external control over much of the caregiving context, working with oneself to stretch capabilities and improve coping allows for some amount of control internally.  In addition, the caregiving context can be reframed as something of benefit to the caregiver, when the caregiver commits to internal personal growth goals.

These goals may include such outcomes as increased patience, improved observational skills, enhanced empathy, increased compassion, greater psychological endurance, enhanced self esteem, improved self-control, greater self knowledge, better limit setting, assertiveness, increased ability to be in the moment, beneficial use of humor, better delineation of self versus other, ability to use perspective effectively, overcoming traumas of the past, inner balance and centering, spiritual connection, effective use of self-expression, and surrender to a Higher Power.  When these benefits are recognized and cultivated, the caregiver can credit her- or himself with the achievements attained in this arena, in addition to the benefit of care to the care receiver.

One might argue that dementia caregiving is hard enough.  Why add another layer of effort to the endeavor?  Because the attainment of these inner goals directly improves a person’s ability to cope with the caregiving, and any challenging situation for the rest of her or his life!   I would assert that improvement in any of these areas is likely to enhance the caregiver’s quality of life overall.  The following are more concrete examples of how these inner talents can be cultivated and used:

  • If you find yourself feeling impatient, angry, and resentful with the care receiver for more than a few minutes at a time, this is an indicator that you are out of balance in giving and receiving (inner balance and centering).  You need to do some things for yourself that will equal the flow of your energy going out.  There are numerous ways to do this.  If you can’t find someone to relieve you right now, as soon as possible find a safe context for the care receiver, and give yourself a momentary break.  Take deep breaths.  Go outside for a few minutes or go in the bathroom and cry or be your own cheerleader and point out how much you have accomplished or play a favorite song or do a few yoga postures or listen to a few minutes of a meditation tape or call a friend for moral support or have a healthy snack… whatever is satisfying for you.  Then take a few more deep breaths and return to the caregiving situation.
  • If you’re feeling overwhelmed by the events of the day try to find humor in the absurdity of it all (beneficial use of humor) or use perspective to help you cope (effective use of perspective).  If the present moment seems pleasant, focus in on your immediate experience and savor every aspect of it.  For example, if the you and the care receiver are eating a tasty lunch, focus in on the experience.  Smell the aroma of the food; taste all the nuances of flavor; enjoy the care receiver’s absorption in eating and pleasure in the food; appreciate the opportunity to sit down and relax.  Really take in the benefit of that moment before you turn to resolving problems.  If the present moment seems chaotic, focus on the bigger picture, such as how you are keeping your loved one in a safe and caring environment or only having another day before you get a break or how you’re growing from the experience.  If you’re overwhelmed with the immediate situation, do what is immediately necessary for the safety of the care receiver and yourself, then focus in on each step, and celebrate accomplishing each piece of the bigger challenge.  Or ask for guidance and inspiration, and open your mind with expectation and confidence.  Often a helpful idea will emerge that puts things in a different light or provides a creative approach to the situation (spiritual connection).
  • Sometimes you’re dealing with situations that result from the long term life choices of the care receiver.  It’s tempting to feel that, as caregiver, you should fix it all.  However, it’s unrealistic and unfair to expect that you can correct the outcome of a person’s life.  For example, if the care receiver didn’t use their funds wisely, you cannot be expected to use up your retirement savings to provide for their care.  If the care receiver was difficult to get along with and alienated friends and family members, you cannot be expected to relieve the person’s loneliness (limit setting, delineation of self versus other).  You can be compassionate, supportive, and helpful, within the means that you can spare.  And that’s enough!
  • If you’re reluctant to receive help from others, ask yourself why you’re not taking advantage of the opportunity (self knowledge).  Is your self-esteem dependent on the caregiving role?  Do you believe no one else can do it as well?  Do you want to be special to the care receiver?  Are you trying to solely control the care receiver’s care?  Have you lost touch with other aspects of yourself and your life?  Are you swinging between the negative poles of guilt and resentment?  What is the cost of these attitudes, to you, to the person offering to help, and to the care receiver?

Committing to inner work as a caregiver helps to shift the locus of control from the care receiver and her or his needs and wants to the caregiver and her or his goals for personal growth.  The caregiving relationship needs to work for all parties concerned.  There needs to be reciprocity in the relationship and a balance in giving and receiving.  A person with dementia often cannot directly express her or his appreciation or gratitude, so that avenue of reciprocity may not be available.  The caregiver, then, must be able to recognize the benefit to the care receiver resulting from her or his care, as well as to discern the present and future benefits to the caregiver from undertaking the care of another.  Consciously engaging in inner work highlights these intangible but powerful benefits, and results in internal resources that enhance quality of life.  Sue Sweeney, Chair, Gerontology Department, Madonna University

When People with Dementia Are Hospitalized

adear_topIt can be a nightmare when a person with dementia is hospitalized.  The environment is strange; the person is frightened and sick; family members may not be able to stay; and “problem” behaviors are almost inevitable. The Alzheimer’s Disease Education and Referral Center, a branch of the National Institute on Aging, has a downloadable publication called “Acute Hospitalization and Alzheimer’s Disease: A Special Kind of Care  which is aimed at healthcare providers.  it would be a handy document to take to the ER or hospital when a family member with dementia needs care.  It offers suggestions for hospital personnel on how to communicate with the patient, ways to manage ADL’s, how to camouflage tubes and dressings, and numerous other helpful tips.  Sue Sweeney, Chair, Gerontology Department, Madonna University