Rush Manual 3. The Family Needs Care Too

/Home/Caregiving and Alzheimer's/Caregiving Booklets and Pamphlets/Rush Manual for Caregivers

CARE FOR THE CAREGIVER

___
Maintain your sense of
humor. Laughter is good
medicine for the daily
hassles you encounter.

Explore your religious
beliefs with the help of
your priest, minister or
rabbi.

Alzheimer's disease has
been compared to running
a marathon, so you need
to pace yourself. Eat
right, exercise and get
plenty of rest.
___


How do you balance your own needs with the needs of the
person with dementia? There is often a strong temptation to do
everything possible for someone under your care at the expense
of your own physical and emotional health. However, if your
own well-being is neglected, the quality of care you provide may
be jeopardized. Therefore, it is essential for you to remain
healthy by learning to cope with the stresses of caregiving.

Providing care to someone who is becoming increasingly
dependent on you may require a change in your priorities. This
may appear to be an overwhelming challenge, but if you have
adjusted to past difficulties in your life, chances are you can
succeed in this challenge, too. There are many ways of coping
and no single strategy works for everyone. You might begin by
learning as much as you can about the disease. Check out books
and videos on the subject of dementia and attend educational
seminars. If possible, check out Internet resources listed at the
end of this manual. Share this information with family and
friends so they will know how best to support you.

Find a physician or other healthcare professional who
understands the disease and the impact it might have on you.
Support groups made up of people facing similar challenges
might also provide the guidance you need. The Alzheimer's
Association offers groups of this kind. You may want to seek
professional counseling as well.

As a caregiver, it is very important for you to have
occasional breaks and to enjoy some leisure time. There are
services available to care for your loved one while you take such
breaks, including in-home care and/or adult day care, which can
allow respite for you a few hours each week. This is important for
your own physical and mental health. Other examples of ways
to take care of yourself include pursuing hobbies, becoming
active in your community or church, and meeting regularly with
friends.

Realize from the beginning that you are in a difficult situa-
tion. It is likely that the disease will worsen in spite of your best
efforts. Nevertheless, take pride in the care and comfort you can
give. Your commitment and hard work enable another person to
live with dignity.


Caregivers' Bill of Rights

Inasmuch as we, the caregivers, devote ourselves to the support
of a loved one, we declare that we have basic inalienable rights.
Furthermore, we recognize that we are not alone in our
challenge to maintain a humane lifestyle for ourselves and our
loved ones. Now therefore, we pledge our support to all who
struggle with balancing the responsibilities of daily living. With
this in mind, we mandate the following rights:
* The right to live our own life to retain our dignity and sense
of self.
* The right to choose the plan of caring that accommodates
our needs and the needs of those we care about.
* The right to be recognized as a vital and stabilizing source
within our families.
* The right to be free of guilt, anguish and doubt, knowing
that the decisions we make are appropriate for our own well-
being and that of our loved one.
* The right to love ourselves enough to have the confidence to
do the best that we are able.

If we as caregivers practice these rights, disabled people will
be provided the best care that we are capable of giving.

"Caregivers' Bill of Rights" excerpted from Gwyther, L.,
"Clinician and Family: A Partnership for Support." In Dementia
Care: Patient, Family and Communityedited by N. Mace.
Baltimore: The Johns Hopkins University Press, 1990.


INVOLVING FAMILY AND FRIENDS
___
Sharing information and
coping strategies with
relatives and friends gives
them the satisfaction of
being helpful as well as
providing the caregiver
and individual with
Alzheimer's disease with
much needed social
support.
___


Caregivers of individuals recently diagnosed with Alzheimer's
disease frequently ask when it is appropriate to share the news of
the diagnosis with extended family members and friends. While
there is no simple answer, this question raises some significant
issues. Some individuals and their families feel that their privacy
would be invaded or that friends would treat them differently if
the diagnosis were known. Even more damaging is the belief that
friends would avoid them if they were privy to this knowledge. A
frank discussion of these concerns can reveal other possible
outcomes.

Caregivers frequently acknowledge that relatives, friends
and others already sense that something is wrong. If caregivers
do not share what they know about the individual with
Alzheimer's, then others are deprived of the opportunity to
understand and make meaning of what they may see as strange
behavior. A bewildered and upset response to the disease's symp-
toms lead uninformed people to limit contact with the
individual. An honest statement of the problem can actually
encourage people to be helpful to the individual with the disease
and the caregiver. Some people may indeed retreat from contact,
but those who remain loyal can then be advised on how to be
helpful. This open communication in turn can reduce the isola-
tion that some diagnosed individuals and caregivers experience.
Sharing information and coping strategies with relatives and
friends gives them the satisfaction of being helpful as well as
providing the caregiver and person with dementia with much
needed social support.

Although individuals with dementia have difficulty remem-
bering recent events, they often retain their memory of the past.
One way to interact well with someone who has problems with
recent memory is to encourage the individual to reminisce about
distant events and memories over which he or she still has
mastery. Socializing with old friends and family members who
shared in past life experiences can provide the individual with a
comfort zone of mutual feelings. However, the person with
Alzheimer's is often not able to initiate conversations or plan
social occasions. He or she may be worried, fearful or
embarrassed over the memory problems. Other people should
take the initiative and assume responsibility for prompting
memories of the past and arranging social engagements that may
be satisfying to all involved.

It is helpful to prepare friends and relatives by letting them
know just how important such interactions are to the person
with memory problems. Ongoing encounters of this type are
quite beneficial, and many caregivers report how much their
relative still enjoys attending family reunions and meeting with
old school friends, military buddies, club members and church
members. In addition, the routines and rituals of everyday life
can take on added significance. Going out to dinner, taking a
walk, visiting a zoo or park, talking with neighbors and visiting
old friends and relatives can be sources of enjoyment for people
with memory problems.

Friends and relatives should be encouraged to give their
time to both the caregiver and the person with dementia. Family
members and friends can provide relief to a caregiver by spend-
ing time alone with the individual with dementia. Discomfort
with the symptoms of dementia sometimes prevents friends and
family members from volunteering their services. If the caregiver
prepares family and friends for any troubling symptoms, they may
learn how to cope with these difficulties and accept them as part
of the disease. For example, explaining that it is best not to
correct an error or memory lapse can provide direction to a
helper unaccustomed to dealing with someone who has memory
and language difficulties. Suggesting topics of conversation or
activities to someone spending time with the person with
dementia can be helpful. Interested friends and family members
will also benefit from gaining greater knowledge of Alzheimer's
disease and how best to care for those with the disease. The care-
giver should share books and pamphlets about the disease with
family and friends for ideas on how they can become involved.


HELPING YOUNG CHILDREN COPE

___
Children can be remark-
ably sensitive and creative
in dealing with people with
dementia.
___

Dementia in a parent, grandparent or great-grandparent will in
some way affect a young child. Changes in the relationship
between the older person and younger person are bound to take
place. With honest communication and some coaching, you can
help a child find satisfaction in the changing relationship.

Adults tend to protect children from painful realities, such
as dementia. But children are naturally curious and should be
given clear and age-appropriate information about the disease.
Their questions should be answered simply and honestly. They
need to be reassured that they did not cause the disease. They
also need opportunities to freely express their feelings of sadness
and anger, and they should be given specific suggestions on how
they can be helpful. Children cope well if they have a proper
understanding of what is happening in their lives.

If a child lives in the same household as the person with
dementia, special steps must be taken to ensure the child's
welfare. Although a child may want to share in the care of the
person, there must be time for the usual activities of childhood
such as friends, play and school. A child should not be allowed
or expected to provide care at the expense of normal childhood
development. Nor should a child have to compete for the atten-
tion of his parents, who may be wrapped up in providing care
and attending to other responsibilities. Efforts must be made to
preserve the integrity of the entire family by balancing
everyone's needs, particularly the needs of a child in the midst of
a busy household.

Children can be remarkably sensitive and creative in deal-
ing with people with dementia. Both generations may be able to
share a number of enjoyable activities such as playing games,
taking trips to a park or strolls in the neighborhood, doing simple
arts and crafts, playing music, singing, reviewing photo albums or
reading aloud story books.

Older children, especially teenagers, may have difficulty
accepting how the person with dementia has changed. They may
avoid contact. They are also more easily embarrassed than
younger children who tend to take the changes in stride. Address
the older child's concerns and don't force the child to spend time
with the person.

Children usually do not talk about their negative feelings,
but instead act them out. A problem at school or with peers may
be a sign that a child is experiencing emotional distress. Such
problems must be taken seriously. It may be necessary to involve
a professional counselor from school or a social service agency.

Several books have been written to help children
understand dementia. These books are tailored to particular age
groups, from preschoolers to adolescents. A list can be found in
the last chapter, Selected Resources.


ACKNOWLEDGING SPIRITUAL NEEDS

In a poem entitled "Love," writer May Sarton compares love to a
spider's web that is fragile and easily broken. The final lines in
the poem read:

Spiders are patient weavers.
They never give up.
And who knows
What keeps them at it?
Hunger, no doubt,
And hope.

Caregivers are people who know hunger and hope. The question
of what keeps caregivers at the task of continuing to offer care is
at the heart of this chapter. All people have spiritual needs. Even
if you do not belong to a church or identify with a particular reli-
gion or even profess faith in God, you probably have a need to
find meaning in your life. People search for ultimate meaning,
for a relationship to something bigger than themselves. The
following story from Rabbi Lawrence Kushner's book, Honey
from the Rock: Visions of Jewish Mystical Renewal, captures the
essence of the word "spirituality."

"One day I visited my daughter's first-grade class. There was
a teacher and her assistant and myself. And 18 souls who had
been present for but six winters. The air hung with a November
chill. The children were playing in four or five groups. Then the
mist outside turned imperceptibly into snowflakes. ‘Look! It's
snowing outside!' one shouted. ‘Winter is here!' And the groups
crumbled as their members ran to the windows . . . ‘Quick
Daddy! Help me on with my coat. We're going outside!' And I
stood at the window watching the snow fall on my little girl."

In this story, a father finds a world bigger than himself in
the delight and wonder he shares with his daughter and her
classmates. Once people know this profound sense of
connection, they hunger for and seek its repetition throughout
life. Following such an experience, there remains a hope that no
matter how often the fragile thread of connection is broken, it
can be recreated. For the caregiver of the person with
Alzheimer's, the threads of hunger and hope may remain. You
may hope for a cure for Alzheimer's, hope that you will have the
strength to continue in your role as caregiver and hope that you
will be able to continue to respond to the person with patience
and love. You may hunger for the past, for a sense of meaning,
for the experience of being nurtured yourself. Hunger and hope,
together with other motivators, may enable you to carry on in
the midst of great demands.

Ernest Becker in his book, Escape from Evil, defines spiritu-
ality as "an expression of the will to live, the burning desire of
the creature to count, to make a difference on the planet because
he has lived, has emerged on it and has worked, suffered and
died." This desire to make a difference, to count, may serve as a
source of strength and motivation for caregivers. It is not unusual
to hear caregivers say, "I may not be able to change the world,
but I can affect what goes on in my little corner of it."


Spiritual Needs of Caregivers

When you can view your caring as an opportunity rather than a
burden, the stresses of providing care may diminish. The spiritual
need for peace and harmony is enhanced when people have
enough inner-strength to help them care freely. If you provide
care primarily out of a sense of duty or obligation, the burdens
and stresses can seem great. The commitment to caring for the
person with Alzheimer's must be made again and again. Each
time the decision is made, you must assess both the needs of the
person with Alzheimer's and your own internal resources. Do you
have sufficient inner-strength to offer care with a minimum
amount of distress?

One of the chief aspects of spiritual well-being is self-
knowledge. All people need to be recognized, appreciated and
loved. All people need social interaction. When you assume the
role of caregiver, those needs do not disappear. Self-knowledge
will enable you to be aware of how much recognition, apprecia-
tion, love and social interaction you need or can expect from
others.

It is wise to remember that people who choose to be care-
givers do so with a complex set of motivations. Some of these
motivations are viewed as admirable and altruistic. Love, loyalty,
duty, self-sacrifice, familial and/or religious obligation are often
among the motivators. Low self-esteem, financial need, rigidity,
fear, habit and self-punishment may also be among the motiva-
tors. Positive and negative motivations can be present at the
same time. Self-knowledge that leads to an awareness of your
own needs, values, limitations and complex motivations may be
the first step in enabling you to see these factors as opportunities
for continued growth.

___
Caring for people with
Alzheimer's elicits a wide
range of feelings in the
caregiver. The acknowl-
edgment of those feelings
is an activity of the
spiritual life.
___


Caring for someone with Alzheimer's elicits a wide range of
feelings in the caregiver. The acknowledgment of those feelings
is an activity of the spiritual life. Particular feelings that arise
again and again are helplessness, anger, aloneness, joy and
delight, sorrow and loss.

The "Why did this happen?" question is one that
Alzheimer's raises over and over. To acknowledge the random-
ness of the universe and one's helplessness is to begin to find the
strength and capacity to cope. The serenity prayer of Alcoholics
Anonymous expresses this request for strength:

God, grant me the serenity to accept the things I cannot change,
and the courage to change the things I can, and wisdom
to know the difference.

The "WHY?" question is an appropriate one and needs to
be asked. But, there comes a point when the question no longer
serves the questioner, and a decision must be made to abandon
the cycle of blame, helplessness and self-pity that it generates.
Energy can then be redirected to problem solving and coping.
The decision to live with certain mysteries in life is a spiritual
one that will likely lead to harmony and peace.


Spiritual Needs of People with Dementia

The seeds of spirituality are sown in childhood. Long before chil-
dren have words to describe feelings, they know what it is like to
be loved or the loneliness of not having someone care for them.
These feelings are stored in the long-term memory and can be
tapped even in late stages of dementia. Many people with
dementia are also able to respond to religious or spiritual symbols
and rituals from their childhood. Old memories may be stirred up
by participating in religious activities. You can help the person
tap into their spirituality in these ways:
* Take a walk in the woods together and appreciate nature's
wonders.
* Listen to moving music or favorite religious hymns.
* Read familiar Scripture passages or prayers.
* Enjoy objects of beauty or religious significance.

In addition to tapping into remembered faith, it is important
that caregivers be attentive to the issues of grief and loss that
confront the person with dementia. The person might mourn
over not being able to perform certain tasks independently.
Acknowledge the person's feelings of sadness and loss while
focusing on remaining abilities. Caregivers contribute to the
spiritual well-being of the person when they promote empower-
ment and respect.

Everyone has a need to be heard. It is important that you
listen to the concerns of the person with Alzheimer's and allow
them to express anger, even anger at God. Frequently, caregivers
and the people they care for try to protect one another from the
pain each feels. The result is further isolation. The sharing of an
experience that is a source of spiritual nourishment can break
down isolation. Read together significant spiritual passages from
the Bible for their religious meaning or literary references that
convey profound feelings about the human condition.


___
Know yourself, acknowledge
your feelings, and commit to
finding and using sources of
replenishment every day.
___


Commitment to Replenishment

Caring for a person with Alzheimer's means that you must give
much of yourself. Acknowledge that you also need to be cared
for. Allow others to help you run errands and to give you
emotional support. Remember that to gracefully receive care
from others is a skill that requires practice. It requires commit-
ment to reach out and ask for help. It requires commitment to
accept the offers made by friends and family.

Just as the needs of the person with Alzheimer's change as
the disease progresses, so will your needs. Know yourself,
acknowledge your feelings, and commit to finding and using
sources of replenishment every day. The spider is a patient
weaver. May you be patient and gentle with yourself as you
assume the challenges ahead.


TAKING CHARGE OF LEGAL MATTERS

As the person with Alzheimer's disease lose more and more of
their mental capacity, they become less able to make decisions
about personal care and the management of personal property.
This is where legal tools such as wills, trusts and durable powers
of attorney become crucial. Who will make decisions for the
person when they can no longer take care of themselves? What
are the person's wishes regarding care in the terminal stages of
the illness? These are questions that should be addressed early on
in Alzheimer's disease, when the person still has the capacity to
make decisions.

___
The individual must under-
stand the nature of the
document they are sign-
ing, who it affects and to
whom authority has been
given.
___


Planning ahead

Planning ahead for incapacity allows the person with
Alzheimer's disease and the family to make choices and
decisions. It is important to understand the concept of legal
capacity before examining specific options for the management
of a person's health, personal care and property. To be considered
competent or capable, an individual should have the capacity to
understand, to reason and deliberate, and to have a relatively
stable set of values. The individual must understand the nature
of the document before signing, who it affects, and to whom
authority has been given.

The question of an individual's ability to make decisions is
complex. It is not an "all-or-nothing" phenomenon. A person
who has early-stage dementia and is mildly confused may still be
capable of making choices and expressing preferences about
healthcare. They may be able to execute a will, but may not be
able to make decisions that require a higher level of cognitive
ability, such as deciding about the management of property via a
living trust. A thorough medical evaluation should provide an
accurate impression of the person's capacity for decision-making.
Then the medical findings should be discussed with a lawyer.

- Living will

The living will is a signed, dated and witnessed declaration
in which the person states in advance their wishes regarding care
during the terminal stages of an illness. It provides guidance to
family members and healthcare providers regarding the use of
artificial, life-sustaining procedures such as cardiac resuscitation,
tube feeding, the use of antibiotics or dialysis, and the person's
wishes regarding transfer to a hospital.

Because the decisions involved in completing a living will
are complicated and require knowledge of medical procedures,
the person with dementia must be operating at a high level of
cognitive ability to complete this document. A person who has
early-stage dementia should be able to manage these decisions.

Living wills are only effective if their existence is known.
Therefore, the person's physician should agree to honor the
expressed wishes in the living will and should have a copy of it
on file. Copies should also be available at home in case
emergency medical attention is required, and a copy should
accompany the person to a nursing home or hospital upon
admission.

- Durable Power of Attorney for Health Care

A durable power of attorney for health care has advantages
over a living will in that it is more flexible and valid throughout
the United States. With a durable power of attorney, the person
designates a trusted family member or friend to make decisions in
the event they are unable to make those judgments indepen-
dently. The document empowers the designated individual to
make selected health care decisions on the person's behalf,
including decisions about life and death. The individual receiv-
ing this authority is known as the "agent." A power of attorney
can only be assigned before the person's incapacity. In cases of
Alzheimer's disease, this means in the early or middle stages of
the disease. The durable power of attorney can be amended or
revoked by the person at any time and in any manner, while they
still have the capacity to do so.

In Illinois, the durable power of attorney for health care
may specify a date on which it becomes effective. On the other
hand, it may state that it is only effective if the agent certifies
that the principal (the person giving the authority to another) is
no longer able to make decisions. In this case, it goes into effect
only when disability strikes. This ensures that the person with a
disability such as Alzheimer's disease remains autonomous for as
long as possible. The authority of the health care agent may
extend beyond the principal's death to matters involving
anatomical gifts, autopsy or disposition of the principal's remains.

As with the living will, durable power of attorney for health
care forms should be included with the person's medical records,
and copies should be available at home in the event they are
requested by a health care provider.

- Illinois Surrogate Health Care Act

The Illinois Surrogate Health Care Act permits family
members or close friends to make decisions about medical treat-
ments on behalf of the person who lacks the ability to make
decisions. The act applies when the person has not completed a
durable power of attorney for health care or a living will and
lacks the capacity to make decisions on their own behalf.

If a durable power of attorney for health care or a living will
have not been completed, the law designates a surrogate
decision-maker in the following order of priority. Once
identified, the surrogate decision-maker is authorized to make
decisions regarding medical treatment for the person with
Alzheimer's disease.
* court-appointed guardian of the person
* spouse
* adult daughter or son
* parent
* brother or sister
* adult grandchild
* close adult friend (as established by affidavit)
* court-appointed guardian of the estate

- Durable Power of Attorney for Property

A durable power of attorney for property instructs an agent
to manage the person's property such as income or assets. As in
the durable power of attorney for health care, the person desig-
nates a trusted family member or friend to make decisions in the
event they are unable to make those judgments independently.
Some legal planners caution against using this mechanism as the
sole means of property management for people with considerable
assets.

If a living will or durable power of attorney were not drawn
up while the person with Alzheimer's was still capable of
comprehensive decision-making, the only legal recourse may be
guardianship, which involves the court appointment of a person
to the property and personal care of the person with Alzheimer's.
The discretion of the guardian is partly restricted, and any deci-
sions, such as consent or refusal of major medical procedures,
require a court ruling. It may be useful to petition for guardian-
ship on behalf of the moderately to severely demented person if
they have not put into place any of the other legal tools
discussed above.

Guardianship not only protects the person from abuse and
neglect but also protects from financial exploitation or poor
health care decisions.

___
People with dementia and
their families are encour-
aged to put into place the
appropriate legal tools as
early in the disease as
possible—while the
person still has the ability
to make good decisions.
___


- Trusts

A revocable living trust is a legal means of giving a
designated person or institution, known as the "trustee," the
right to manage all or a portion of a person's assets, including
property and income. Trusts of this kind are set up for people
with substantial assets. They should be established in the early
stages of Alzheimer's disease, when the person's cognitive abili-
ties are still intact. A trustee can take control immediately or
only under certain conditions, such as when the person becomes
disabled and loses the ability to make decisions. Terms of the
trust can be amended or revoked at any time.

- Wills

A will is the traditional means of planning for the distribu-
tion of assets after one's death. A will contains a bequest plan,
which designates how property will be divided. Since making a
will does not require a high level of cognitive ability, it can be
completed in the early or middle stages of Alzheimer's disease.
The will is only valid, however, if the person possesses the
following abilities when executing the will:
* Awareness of making a will.
* Knowledge of the extent of property to be bequeathed.
* Ability to formulate a reasonable plan for the distribution of
the property.
* Ability to understand the relationship between oneself and
the recipients of one's belongings.

Persons with dementia and their families are strongly
encouraged to put into place the appropriate legal tools as early
in the disease as possible, while the person still has the ability to
make important decisions. Planning for the future will clarify
everyone's legal and financial roles and responsibilities.