CaregivinCaregivingg

The Other Side of The Other Side of Alzheimer’sAlzheimer’s

Caregiver:Caregiver: The forgotten, The forgotten, hidden hidden or or

second patientsecond patient

You know too well the patient You know too well the patient side of Alzheimer’s…side of Alzheimer’s…

How much emphasis or acknowledgement, How much emphasis or acknowledgement, however, have you allowed yourself as a however, have you allowed yourself as a caregiver???caregiver???

How is caregiving for an Alzheimer Patient How is caregiving for an Alzheimer Patient different than caregiving for someone with different than caregiving for someone with Cancer, Heart Disease, Renal Failure, or Cancer, Heart Disease, Renal Failure, or Diabetes?Diabetes?

Alzheimer’s Disease is most often Alzheimer’s Disease is most often gradual and progressive with each gradual and progressive with each increasing stage taking more of an increasing stage taking more of an

emotional and physical toll on emotional and physical toll on patient and caregiver alike.patient and caregiver alike.

Increased Deterioration Increased Deterioration ==

Increased DependencyIncreased Dependency

AcceptanceAcceptance

Acceptance does not Acceptance does not come easy, often come easy, often

denying or minimizing denying or minimizing symptomssymptoms

Quickly, even in early Quickly, even in early stages, roles and stages, roles and

responsibilities change.responsibilities change.

Change which brings a wide range of very Change which brings a wide range of very natural emotions in response to the disease…natural emotions in response to the disease…

Frustra

tionOverwhelmed

Fear

Fear

Anger

SadnessGuilt

ConfusionEmbarrassment

Don’t cheat yourself out of these very real emotionsDon’t cheat yourself out of these very real emotions ..

Allow yourself to experience and workAllow yourself to experience and work through these emotions.through these emotions.

Primary mistake of Primary mistake of caregivingcaregiving……““Endless reservoir of Endless reservoir of

energy, spirit, energy, spirit, knowledge, skill, knowledge, skill,

support, patience, and, support, patience, and, yes, even love.”yes, even love.”

Caregivers are very Caregivers are very susceptible and at susceptible and at

high risk for…high risk for…Stress Anxiety

Depression

Approximately 95% Approximately 95% of all caregivers will of all caregivers will

experience experience significant distress significant distress at various stages of at various stages of

their caregiving their caregiving experience.experience.

Peaks & Valleys of Peaks & Valleys of ReactionsReactions

AnxietyAnxiety

DepressionDepression

StressStress

Symptoms of Symptoms of AnxietyAnxiety

Excessive worryExcessive worry Preoccupation or fixationPreoccupation or fixation Shortness of breath or other Shortness of breath or other

physiological responsesphysiological responses Increased/Decreased AppetiteIncreased/Decreased Appetite Heightened SensitivityHeightened Sensitivity TearfulTearful

Symptoms of Symptoms of StressStress

AngerAnger DenialDenial Isolation/WithdrawalIsolation/Withdrawal ExhaustionExhaustion IrritabilityIrritability Sleep changes/sleeplessness/insomniaSleep changes/sleeplessness/insomnia

Symptoms of Symptoms of DepressionDepression

Feelings of hopelessnessFeelings of hopelessness Sleep changes / excessive sleepingSleep changes / excessive sleeping Lack of interestLack of interest Loss of concentrationLoss of concentration Physical manifestations: aches/painsPhysical manifestations: aches/pains Weight gain / lossWeight gain / loss Lack of energyLack of energy Feeling of loneliness and abandonmentFeeling of loneliness and abandonment

Five Five Reactions to Reactions to

Family Family AdjustmentAdjustment

DenialDenialDescription:Description: The initial response The initial response

that nothing is wrong. Denial can that nothing is wrong. Denial can also reappear as false hopes that also reappear as false hopes that treatment will cure the patient.treatment will cure the patient.

Help for the CaregiverHelp for the Caregiver: : Information about Information about the disease can help families understand the disease can help families understand what is happening, and what to expect.what is happening, and what to expect.

Over-involvementOver-involvementDescription: Attempts to compensate for the illness Attempts to compensate for the illness

and its impairments. By being over-involved in the and its impairments. By being over-involved in the patient’s care, the caregiver may refuse help and feel patient’s care, the caregiver may refuse help and feel isolated. Sometimes the primary caregiver will try to isolated. Sometimes the primary caregiver will try to meet every need of the patient.meet every need of the patient.

Help for the CaregiverHelp for the Caregiver: : Families should Families should be aware of all of the available options for support, be aware of all of the available options for support, including in-home support services. Caregivers must including in-home support services. Caregivers must understand that no one person can meet all the understand that no one person can meet all the patient’s needs. The consequences of over-patient’s needs. The consequences of over-involvement can be detrimental to the patient.involvement can be detrimental to the patient.

AngerAngerDescription: Anger can occur when the family realizes that Anger can occur when the family realizes that

attempts at compensation have failed, and physical and attempts at compensation have failed, and physical and emotional burdens begin to take their toll. Long-standing and emotional burdens begin to take their toll. Long-standing and interpersonal problems and unresolved issues can be troubling interpersonal problems and unresolved issues can be troubling at this stage if the root of the anger is not addressed.at this stage if the root of the anger is not addressed.

Help for the CaregiverHelp for the Caregiver:: Support groups can help Support groups can help families work through feelings of anger and gain families work through feelings of anger and gain empathy from other families. If anger becomes empathy from other families. If anger becomes severe, family members may need to be encouraged severe, family members may need to be encouraged to enter counseling so that hostility does not stand in to enter counseling so that hostility does not stand in the way of patient care or sever important family ties.the way of patient care or sever important family ties.

GuiltGuiltDescription: Developed from anger and “what ifs” Developed from anger and “what ifs”

brought on by looking back. Unresolved feelings of brought on by looking back. Unresolved feelings of anger or guilt can lead to depression. Guilt is often anger or guilt can lead to depression. Guilt is often experienced when the patient can no longer be cared experienced when the patient can no longer be cared for at home.for at home.

Help for the CaregiverHelp for the Caregiver:: These feelings are These feelings are normal responses to extreme stress. It is what normal responses to extreme stress. It is what caregivers and family members do with their feelings caregivers and family members do with their feelings that really matters. that really matters.

AcceptanceAcceptanceDescription: Resolution or acceptance of the Resolution or acceptance of the

problems. Acceptance comes from a full problems. Acceptance comes from a full understanding of the disease and its effects on the understanding of the disease and its effects on the family.family.

Help for the CaregiverHelp for the Caregiver:: Support, education, and Support, education, and other resources can help families move toward other resources can help families move toward acceptance.acceptance.

*Excerpted from *Excerpted from Caring for the Alzheimer’s PatientCaring for the Alzheimer’s Patient Geriatric Geriatric Mental Health FoundationMental Health Foundation

So How Do I Cope?So How Do I Cope? Be gentle with yourselfBe gentle with yourself

Be realistic with self and patient expectationsBe realistic with self and patient expectations

Rest/Sleep/Eat to avoid health problemsRest/Sleep/Eat to avoid health problems

Make time for yourself…Make time for yourself… without feeling guiltywithout feeling guilty

Extravagant Extravagant or Simpleor Simple

A dedicated project A dedicated project with deadlines orwith deadlines ora leisure activitya leisure activity

A Picture Album with NotesA Picture Album with Notes

BookBookManuscriptManuscript

HandwrittenHandwrittenWord ProcessedWord Processed

Audio TapedAudio TapedVideo TapedVideo Taped

A A DiaryDiaryMusicMusic MemoriesMemories

A CookbookA Cookbook

How To??? Think and plan to take care of yourself, Think and plan to take care of yourself,

asking this question “Take Care of Me asking this question “Take Care of Me Means???”Means???”

So How Do I Cope?So How Do I Cope?

Educate yourself about the Educate yourself about the disease and its related impactdisease and its related impact

So How Do I Cope?So How Do I Cope? Pursue InterventionsPursue Interventions

RespiteRespite

MedicationMedication

CounselingCounseling

Friends/Family AssistanceFriends/Family Assistance

Support GroupsSupport Groups

Skills TrainingSkills Training

Taking Care of Taking Care of Self Is Self Is NOTNOT

a Selfish Acta Selfish Act

HandoutsHandoutsReducing the stress in your lifeReducing the stress in your life

So how am I doing anyway?So how am I doing anyway?A Caregivers Bill of RightsA Caregivers Bill of Rights