Alzheimer’s, Strokes, AIDS, & Palliative Care
Ministry to the “Unreachable & Untouchable”
Alzheimer’s Disease
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An organic disease conclusively diagnosable only through brain tissue examination (biopsy or post mortem) Brain atrophy is usually present on CT or MRI Cognitive deficits develop slowly & deterioration is progressive. Avg. life expectancy from onset to death is 8 to 10 years; great variance.
Alzheimer’s
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Memory & other cognitive deficits occur early; motor dysfunction occurs late. First-degree relatives of early onset (< age 65) are at increased risk Signature characteristics: memory & language impairment (aphasia, apraxia, agnosia, disturbance in executive functioning)
Ten A’s for Alzheimer’s Care
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1. Arguments are useless
2. Allow freedom & independence
(safety!) 3. Actions help when verbalizations fail 4. Assume that they hear & understand 5. Appreciate good days or moments
Ten A’s for Alzheimer’s Care
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6. Appropriate activities help pass time
7. Adapt the task to ability 8. Agitation alleviated by calm,
reassuring, respectful responses 9. Adults are still adults (mental vs. social) 10. Assessment is ongoing
Pastoral Care & Alzheimer’s
Care of Person & Family (Caregivers) They remain a spiritual being despite cognitive losses. Talk, pray, sing, read Scripture Face your own uneasiness & don’t be in a hurry; give visual cues of who you are. KISP – “Keep It Simple, Pastor” (or KISS, “Stupid”)
Stroke (CVA) Victims
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CVA = Cardio-vascular accident Typically occurs at night when blood flow slows Thrombotic, hemorrhagic (most dangerous), embolic, & compression (worst prognosis) CVA’s Better prognosis (1st three) if survive the first 30 days
Stroke (CVA) Victims
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Left-Brain Injury = right hemiplegia & speech disturbance Right Brain Injury = left hemiplegia & perceptual problems Effects: emotional changes (organic) > crying inappropriately [swearing]; bladder incontinence
Stroke (CVA) Victims
Emotional Response: Panic – fear
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that God has deserted me; fear of death, insanity; feel complete hopelessness
Family
often takes 100% responsibility for the stroke
Fears
person will live as a vegetable Fears person will die
Help family tolerate the panic
CVA & Chronically ILL
Solitude & boredom are two major enemies in recovery for chronically ill persons. Solitude & boredom can exacerbate the depression that often is present
AIDS: Acquired Immune Deficiency Syndrome
Caused by HIV (Human Immunodeficiency Virus) Death often comes through opportunistic diseases such as Pneumocystis carinii pneumonia. Kaposi’s sarcoma (cancer) also is common. AIDS is incurable
Ministry to Persons with AIDS
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Condemn? No. Condone? No. Reconciliation & Comfort? Yes! Many are rejected by family, friends, & church community. Need a loving, caring, holy community. CONFIDENTIALITY is a must!! Do not be afraid to touch or hug
Ministry to Persons with AIDS
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The primary pastoral response will be to the grief associated with AIDS Taking a leadership role in encouraging support by the church & community If God’s children do not care, who will?
What Biblical/theological warrant is there for neglecting those afflicted with AIDS? Wherein is God glorified?
AIDS & Ministry Resources
Amos, William E, Jr. When AIDS Comes to Church. Westminster, 1988. Hoffman, Patricia L. AIDS and the Sleeping Church. Eerdmans, 1995 Shelp, Earl E., Ronald H. Sunderland, & Peter W.A. Mansell. AIDS: Personal Stories in Pastoral Perspective. Pilgrim Press, 1986.
Curative – to restore health; recover from disease Palliative – to make less severe, without curing
Three primary phases in the natural course of a disease:
Terminal – ending in death; fatal
Michael Ashby & Brian Stoffell, “Therapeutic Ratio and Defined Phases: Proposal of Ethical Framework for Palliative Care,” British Medical Journal, 302, 6788 (June 1, 1991), 1322-1324. InfoTrac 12-3-01
Curative
Cure or durable, complete remission is a reliable expectation.
Palliative
Terminal
Death is imminent and inevitable. Ineffective treatments are discontinued.
Curative treatment is not expected to prolong life. Quality of life outweighs desire Dominant theme: for longer life. Survival Dominant theme: Comfort, symptom relief, general wellFocus: Quantity being of Life Focus: Quality
Dominant theme: Comfort; symptom relief Focus: Quality of Death
The Caregiver’s Response
Supportive of the patient and the family Healthy attitude toward death (not death as defeat) Manageable level of anxiety about dying Your limitations (inability to control outcome) and self-image Your grieving process and feelings of guilt, anger, sadness (responses to loss)
When you are struggling with holding on versus letting go, ask yourself, “In light of the present realities (recovery & cure is not possible), what if my patient could not die?”
Ask God to comfort you, your patient, family, and fellow staff members.
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” II Corinthians 1:3-4
Two Other Common Diseases
Diabetes - unable to use glucose (sugar); ketoacidosis
Type I (IDDM (insulin-dependent diabetes mellitus; 10 %) – autoimmune disease; no insulin; requires insulin injections or insulin pump; insulin reactions are a concern. • Type II (NIDDM or non-insulin-dependent diabetes mellitus; 90 %) – metabolic disorder; insulin resistance; requires medication (often oral) • Normal Blood Sugar = 70-120; diabetic neuropathy; amputations; (ADA) www.diabetes,org; www.cdc.gov/diabetes; www.diabetesnet.com Exercise, diet, monitoring, & medication are essential; failure = nerve damage
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Hypertension - (high blood pressure; “the silent killer;” kidney damage,
strokes, aneurysms, etc.) Medications include diuretics (“water pills”), ACE inhibitors, etc. Normal BP = 120/80
Hospital Monitors
Heart – (60-80 bpm at rest); don’t alarm patient; focus on patient Lung – (adults 14-16 bpm at rest; up to 60 bpm with
exercise; infants 40-45 bpm at rest; 25 bpm by age 5)
Brain – Intracranial Pressure (ICP) - Cerebrospinal fluid
(CSF) pressure measured from a needle or bolt introduced into the CSF space surrounding the brain. It reflects the pressure inside of the skull. www.waiting.com/glossary
IV (Intravenous) Pumps & Alarms –
“Tampering: Staff must be aware that patients and visitors can open pump doors, remove syringes and administration sets, change settings and switch off pumps.” www.ebme.co.uk/arts/art11
Call Buttons – may use to notify nursing staff of a problem