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Caregiving

A guide by Sakuteiki "sakuteiki" (Grants Pass, OR United States)

Products sampled from this guide:
Being responsible for the well-being of another, whether as parent, daycare provider, teacher, nurse, doctor, or caregiver for family members with stroke, heart attack, cancer, mental illness, dementia requires maintaining our own mental physical emotional spiritual and financial health first so we are capable of supporting those we love.

Stanford professor Robert Sapolsky National Geographic: Stress - Portrait of a Killer: stress hormones cortisol, adrenalin shrink brain area for memory, learning (hippocampus), mimicking the brain damage which occurs after concussion (mild Traumatic Brain Injury TBI), Post Traumatic Stress Disorder PTSD or early dementia (American Association for Advancement of Science Journal SCIENCE 29Jul2011 pp506-521 untreated TBI PTSD depression evolution into dementia).

Tomatoes may aggravate joint swelling and pain in those with arthritis.

Calming reassurance
Make a CD with your loved one's favorite music and photos from family albums.
Humorous DVDs Soapdish; Tootsie - 25th Anniversary Edition; Meet Me In St. Louis (Two-Disc Special Edition); On the Riviera Danny Kaye 1951, ASIN: B000K7VHNM That Night in Rio Don Ameche and ASIN: B000FJ2OPK Folie Bergere de Paris Maurice Chevalier 1934 three comedies made from identical MGM script in different eras. Those with hearing impairments may prefer subtitles and/or TV Ears 10321 2.3 System Wireless Headset System (Blue) to increasing volume. This compromise controls excess ambient sound.
Have the nurse check for wax impaction in the ears before you decide that hearing loss is occurring. A simple irrigation or ear wax cleaning kit may restore hearing acuity. Ear Wax Rmvl Syr, any drugstore will have them, NeilMed has a kit as well.
Dentures need to be removed and cleaned daily. Denture presence ensures natural formation of gum and facial features as well as allowing food chewing, but removal allows relief from rubbing against the inner mouth. Without dentures the outer corners of the mouth gape allowing saliva to drool out, preventing understandable speech and dignified chewing.
Suspicions may be alleviated with a bank visit to money and valuables, to see account numbers, and ask questions.
Chinook 2100 self contained motorhome: drives and maneuvers like a car, holds oxygen tank, 2 recliners, DVD player, bathroom. Care receiver can travel in comfort. Caregiver has a place to stay in hospital parking lot. Both can shop together relieving tedium of unvarying home confinement.
Be honest if care receiver refuses adult diapers, throws them across the room. Define limits of your ability to wash bed linens clothes, houseclean, pay bills and provide continuing care at home. State explicity what you want to happen. "I apologize for not speaking up earlier. "I was afraid you would be angry or hurt. When this occurs I feel overwhelmed and exhausted. I need you to wear these each day." Or "I can appreciate the way you see the situation. I see it differently from my experience. I want to share with you my ideas. Please, first I want to hear your feedback on my ideas before we move on."
Apple iPad 2 MC769LL/A Tablet (16GB, WiFi, Black) 2nd Generation Speak Up app $1.99 allows those with autism, tracheotomy to communicate with speech via iPad.

Peanut butter feel good movies: Unconditional Love (Widescreen/Full Screen), Let's Make Love, Gilda, The Holiday 90yo Eli Wallach reminiscing with his buddies on the early days of cinema, Christmas movies It's a Wonderful Life (60th Anniversary Edition), Christmas in Connecticut, Holiday Inn (Special Edition), White Christmas (Anniversary Edition), The King And I, South Pacific (Collector's Edition), My Fair Lady, With a Song in My Heart - The Jane Froman Story, The Benny Goodman Story. The musical metronome of a favorite DVD from the contented past may calm agitation.

The Spitfire Grill, *Batteries Not Included, The Descendants George Clooney, The Trip to Bountiful reminders to try to find hope in whatever the situation.

Responsible education and support are available from credible organizations such as NAMI National Alliance on Mental Illness free F2F Family to Family 12 week Education series, P2P Peer to Peer Education series, Alzhemier's Association, American Cancer Society - Relay for Life, American Heart Association, Diabetes Association, national patient advocacy associations.
HASL Handicapped Awareness Support League will assess a home, recommend alterations to simplify caring for one in wheelchair, e.g. flat downsloping floor in bathroom into shower, to roll wheelchair in place, low drawers and pull out shelf for cutting chopping in kitchen so loved one may participate in cooking, wide doorways for wheelchair, gurney access, down tilting bathroom mirrors.
American Association for Advancement of Science Journal: Cancer Crusade at 40 documents 40years of progress in cancer detection treatment, latest advances in treatment of breast, colon, prostate cancer. 25Mar2011 Vol.331 No.6024 pp 1477-1656
NAMI www.nami.org National Alliance on Mental Illness free 12 week F2F Family to Family and P2P Peer to Peer education classes, IOOV In Our Own Voice presentations by sufferers of mental illness, advocacy for Mental Health Courts, health insurance equity, destigmatization of mental illness.
Alzheimer's Association alzheimerread@gmail.com reader's room for caregivers, support groups for patients and family
The Caregiver Helpbook, Powerful Tools for Caregivers Caregivers free six week 2.5hr/week course offered worldwide Powerful Tools for Caregiving

Coping defusing skills
Heartsounds: The Story of a Love and Loss Memoir of caregiving after heart attack.
Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson Being with, listening, bearing witness with respectful lovingkindness. Write down the stories for later generations.
Parenting With Love And Logic (Updated and Expanded Edition) Parenting with Love and Logic Foster Cline MD, Love and Logic classes local classes 6-8weeks 2hr/week
Free private web site caringbridge.com for families who wish to create a website to keep those invited up to date on the status of the care receiver and to leave messages. This allows the caregiver to use whatever time is available on caregiving rather than phoning.
Ask the phone company for Goodwill minutes USCellular complimentary phone time for caregivers who have to use expensive daytime minutes to contact distant relatives in other time zones to keep them updated.
Family Meetings: via conference calls, employing an outside facilitator may allow questions to be raised, concerns expressed, the entire unit of suffering beyond the care receiver to actively participate in consensus, relieving the primary caregiver of the burden of solitary decision making. Healing for the entire family.
Outside caregiver agencies may charge $35/hour ($350/day) for an aide, although caregiver receives lower wage. Becoming an employer and hiring a caregiver oneself requires periodic salary, withholding of federal and state taxes, FICA, Medicare, workman's compensation, health insurance, etc. Hiring a CPA to handle these requirements eases primary caregiver stress.

2011 Depression and cognitive impairment http://bit.ly/WHIMS-AGS-Summary neuropsychiatric exam: those with depressive symptoms Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America have twice the risk of cognitive impairment and dementia as those without depression. Risk is not affected by baseline cognitive function or hormone therapy. Depression is treatable human suffering http://bit.ly/FHA-Depression.

Memoir of care receiver
Living Proof true story of the discovery of herceptin. Hope-filled movie of women who made a difference.
The Center Cannot Hold: My Journey Through Madness Elyn Saks reveals her personal experiences while advocating for humane healing; the role of befriending, ritual, patient gentle persuasion, avoiding alcohol nicotine caffeine.
Temple Grandin starring Claire Danes; continued learning growth (Temple Grandin is now age 64) through social skills training. Control of panic, sensory overload. Visual thinker's nurturance by animals, scientist mentor, abstract thinker aunt and loving tiger mother. View DVD second time with Temple's commentary in Special Features: I don't want my thoughts to die with me. I want my life to mean something.
My Stroke of Insight: A Brain Scientist's Personal Journey neuroscientist whose brother suffers schizophrenia herself experiences mental illness, dementia with stroke, lives in right brain.
PBS 6 part series Autism Now! available on internet with Robert MacNeil describes panic generated by change of routine, lack of empathy for harm caused to others, emotional dysregulation (crying anger outbursts), sensitivity to sensory stimulation similar to dementia. Perhaps broken brains share a final common pathway as functional connectivity among brain neurons deteriorate, whether due to mental illness or brain cell death from stroke trauma.
My Name Is Bill W Bill W and Dr. Bob whose friendship saved their lives.
Still Alice I'm still here: aging and identity.
Made in Dagenham equality as a right, not a privilege; PTSD caregiving

Contact professionals for advice: eldercare attorney for Durable Power of Attorney, Power of Attorney for Financial Matters, Power of Attorney for Healthcare, Advanced Directive, Trusts, CPA for bill paying taxes insurance, advice from Senior Center, Area Center on Aging, Visiting Nurses Association for respite care, hospital discharge planner for list of names of available in-home caregivers for respite care, Social Work advocate for filling out forms for unemployment, disability, health insurance, insurance disputes, etc.

First priority is to obtain a signed power of attorney for healthcare and a power of attorney for financial matters. You are authorized to pay bills, make financial decisions (selling car, home), have access to medical records and doctors.

Estate auctioneers will go through living space, take appliances, furniture, clothes, collectibles to appropriate dealers or to an auction center where the goods will be combined with others' for maximum exposure, even tag sale items. If prices are not adequate the auctioneer will move your items around to different auction sites to obtain the best return. Donated items will be directed to charity of your choice with receipts gathered for taxes. The auctioneer retains a 35% premium for selling household goods (cleaning, landscaping is charged at $10/hr) providing income for retirement costs and simplifying moving. You may receive $15,000 for mid-range furniture, appliances and goods. If you have specialty items, antiques, coins, guns, collectibles, vintage clothes, cars, canes, machinery, receipts may be different.

Bonded Property Managers oversee selecting renters, maintenance, collecting rents on time providing consistent rental income for the care receiver. If more income is needed, the home may be sold; a real estate agent receives 6% of sale price as fee or use Redfin real estate agents who charge 3%. Check Zwillow for the prices of comparable homes in the neighborhood. If the home is located within walking distance of downtown, close to county offices, post office, grocery, restaurants, stores, covered garage, cul-de-sac, it is prime renting locale for young working professionals. Real estate staging for sale is different than staging for decoration: consult specialized real estate SALES stagers (start $500 plus $10-25/hour). Consider the needs of the care receiver for financial support to maximize long term income from the home.

Physical health: adapted exercise (Sit and Be Fit) accompanied by decade appropriate music in Assisted Living facilities are helpful for maintaining flexibility, balance, strength. (Glenn Miller, Elvis, Beatles, Michael Jackson) Yogalates uses 2.5ft diameter rubber balls, stretch bands, small weights, and sitting in a chair to achieve yoga stances while fully supported to avoid falling. Rhythmic drumming on 2.5ft dia balls with drum sticks promotes rhythm, releases frustration, stretches limbs. Aquatic exercises in heated pools ending with sociable chats in the spa encourage strengthening against water resistance for arthritis. Scrapbooking of photos (handling scissors, tape, glue), writing down stories in journals as Ethical Wills: Putting Your Values on Paper, 2nd Edition (retaining handwriting skills), continuing woodworking pottery sculpture knitting book club jewelry making, dance, yoga, Tai Chi, meditation all contribute to maintaining mental-physical function.

Palliative Care for Advanced Alzheimer's and Dementia: Guidelines and Standards for Evidence-Based Care Avoid polypharmacy and invasive intrusive medical surgical procedures which decrease comfort and impair quality of life.

We are human beings not human doings. What we perceive as "best" or true may merely reflect who we are in this moment. With time and experience we continue to learn grow and alter choices. Regret is sadness over things beyond our control, a natural maturing of decisions with learning; guilt is intentional harm to another, remorse, empathically apologizing, commitment to never repeat the behavior, making amends and reparations then moving on. Guilt must not be confused with natural regret over situations out of our control, not of our choosing.

An event may occur which exceeds our caregiving skills. How do we balance our own needs, those of other family and the care receiver? Violence or disappearance due to wandering in dementia, agitation, paranoia, psychosis may happen. Dementia (de = less than, mentate = to think) is thinking less well than one did before. Frontal cortex (behind the forehead) brain cells, vulnerable to insult (TBI traumatic brain injury, alcohol nicotine caffeine, loss of oxygen) carry the sense of self, math, decision making, etiquette, restraint.

Dementia empties the memory of identity, like narrowing the field of vision with age. Very limited social skills repertoire remains: anger, suspicion, and vindictive cruelty masking grief, terror, loneliness, mourning, loss. Transitions (any change) may coincide with marked decline in function. The final year may be traumatic for care receiver and family together if one is not prepared to provide palliative care (hospice).

Average institutional care costs range from $72,000-$200,000/year. Medicaid requires spending down resources to qualify for assistance. Spousal homelessness becomes a risk. Spouse may remain in home through Spousal Impoverishment Law. At death, through the DHS public assistance cost recovery program, caregiving costs paid by Medicaid are refunded to Medicaid to replenish funds for future needy care receivers.

Losses are transitions from what was, to what is different. We may continue to manage care as best we can even if direct services are provided by others. Respecting the limits of our energy, lack of sleep, finances, etc is shepherding caregiving resources for the long term. Acknowledging personal limits defines responsible caregiving; you can only do what you are capable of at this time. Sometimes different arrangements must be considered for the safety and well-being of your loved one as well as your survival from caregiver stress-related disability from depression, exhaustion, stroke, heart attack even death. Half of caregivers die before their loved one receiving care. Plan for conservators and guardianships to care for your loved one in case of your death.

Become informed, self-educate and self-nurture to effectively carry out duties and responsibilities to those entrusted to your care Flourish: A Visionary New Understanding of Happiness and Well-being, eat fruits and vegetables China Study. Dhamma Brothers self-soothing meditation and 10year follow-up.

2009 Oscar Best Foreign Film: mourning, grieving, loss as a final challenge. Departures art of healing, Steel Magnolias (Special Edition), Terms of Endearment, Beaches (Special Edition), Wit, Hachi: A Dog's Tale, Barney's Version.

Please remember to take care of yourself first, avoid alcohol nicotine caffeine, sleep, drink water, eat fresh fruits and vegetables, take time alone to self calm and for relaxation, be with those who support and appreciate you, speak the truth with lovingkindness (Aikido Communication in Amazon Guides under profile Sakuteiki).

If you as caregiver become ill or disabled, then who will take care of your loved one?

Self-nurture through your journey: healing optimism soothed by memory Beginners

Products mentioned include:
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Sakuteiki "sakuteiki" (Grants Pass, OR United States)
Qualifications: a work in progress, learning, growing
Last updated: 2/5/13
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