Alzheimer’s Answer Book€¦ · Caregiver’s Guide Diane Hischke, R.N., M.S.N., C.M.C. •...
Transcript of Alzheimer’s Answer Book€¦ · Caregiver’s Guide Diane Hischke, R.N., M.S.N., C.M.C. •...
Alzheimer’sAnswer Book
Jim Schuster, J.D., C.E.L.A.Diane Hischke, R.N., M.S.N., C.M.C.
Editors
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The Gift I Could Not Give
My mother will be ninety-one tomorrowAnd today I am buying her a gift.I wander around the shopSeeing all the things she once enjoyed –A fragile china cup, a book, a puzzle –What shall it be?
Not the cup. It is too fragile – too hard to hold,And where would she keep it?A book then – I’ll get her a book!But she says she can no longer read,She who all her life loved so much to read.The puzzle then – but no, even a small oneIs too hard – too frustrating.
Tears fill my eyesNot because I cannot find her a gift,But because she has lost so muchOf who she is,And I cannot give her backThe gift of herself.
~ Edith Zimmerly
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Table of ConTenTs
About the Authors ....................................................................4
What Is It? ................................................................................7 Dr. Bruce Sack
Caregiver’s Guide ...................................................................17 Diane Hischke, RN, MSN, CMC
The Legal Path .......................................................................27 Jim Schuster, JD, CELA
Intelligent Care .......................................................................41 Sandra Lyness, Ph.D.
Working with Challenging Behaviors ....................................53 Kelley Fulkerson, MPA Diane Hischke, RN, MSN, CMC
Financing the Care .................................................................63 Long-Term Care Insurance Dorothy McMahon, LUTCF, CSA, CLTC, LTCP
Non-Profit Resources .............................................................79 Area Agencies on Aging Alzheimer’s Association Adult Day Care ..................................................................80 Legal Resources ................................................................82 Others ................................................................................82
Contact the Authors ..........................................................83
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Authors:
What Is It?Bruce M. Sack, M.D. • BoardCertifiedAdultandGeriatricPsychiatrist • FounderandClinicalDirectorofBotsfordHospital GeropsychiatricUnitfor18years • Inprivatepracticeinadultandgeriatricpsychiatrywith ComprehensivePsychiatricServices,P.C.,ofFarmington Hillsfor22years
Caregiver’s GuideDianeHischke,R.N.,M.S.N.,C.M.C. • FounderandProfessionalGeriatricCareManagerwith ServingSeniors,Inc.,ofRochesterHillssince1992 • VicePresidentofMidwestChapterofNationalAssociation ofProfessionalGeriatricCareMangers • CertifiedbytheNationalAcademyofCertifiedCare Managers • ClinicalNurseSpecialistinPsychiatricMentalHealth Nursing • TaughtPsychiatricMentalHealthNursingatWayneState &OaklandUniversitiesforeightyears • MemberofPublicPolicyCommitteeofGreaterMichigan ChapteroftheAlzheimer’sAssociation
The Legal PathJim Schuster, J.D., C.E.L.A. • Licensedasanattorneysince1978 • FormerChairoftheElderLawandAdvocacySectionof the Michigan State Bar • CertifiedElderLawAttorneybytheA.B.A.accredited National Elder Law Foundation • MemberoftheNationalAcademyofElderLawAttorneys • Member,ProfessionalSpeakersBureau,Alzheimer’s Association • PublisherofthePatientAdvocate’sGuidetoNursing HomeCare
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Intelligent CareSandra Lyness, Ph.D. • LicensedClinicalPsychologistforFamilies&Individuals • AssociateprofessoratWayneStateUniversityfrom 1967 to 1997 • Co-directorofacomprehensiveoutpatientpsychiatric clinicinBloomfieldHillsforover30years • Co-directorwithWalterAmbinder,Ph.D.,J.D.of “Civilized Divorce”, a non adversarial divorce counseling andlawpractice
Challenging BehaviorsKelley Fulkerson, MPA • PastDirectorofAsburyHall,Michigan’ssecond Alzheimer’sSpecialCareUnit • FormerDirectorofEducationandTrainingforthe Alzheimer’sAssociation-GreaterMichiganChapter • MemberoftheAlzheimer’sAssociation’sMedicaland Scientific Advisory Council • AdjunctProfessoratMadonnaUniversity
DianeHischke,R.N.,M.S.N.,C.M.C.
Financing the CareDorothyM.McMahon,LUTCF,CSA,CLTC,LTCP • LicensedInsuranceAgentsince1982 • President/OwnerMcMahonandAssociates,Ltd.since1985 • CertifiedLong-TermCareInsuranceSpecialistsince1987 • LifeUnderwriterTrainingCouncilFellowsince1989 • MemberofNationalAssociationofInsuranceandFinancial Advisors • MemberofNationalEthicsBureau
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Alzheimer’s
is the most
common
cause of
dementia
What Is It?
Alzheimer’s Disease – An OverviewAlzheimer’s disease is themost common cause ofdementia.PeoplesufferingfromAlzheimer’sdiseaseexperience a slow onset and gradual progressionof deterioration of higher intellectual functioning.Dementia is an acquired illness in which there is impairment in orientation,memory, judgment andinsight, along with declines in social graces and ability todoactivitiesofdailyliving.Withanydementia,therecan be secondary behavioral symptoms, includingauditoryorvisualhallucinations,paranoia,andotherdelusions,anxiety,agitationandsecondarydepressionormania.Unfortunately at this time,Alzheimer’sremainsadiagnosisofexclusion;onemustruleoutothermedicalandneurologiccausesofdementia,thatis,cognitiveandmemoryimpairment.Itisalsoveryimportanttoidentifythoseelderlypatientswhoaresufferingfromdepression,asdepressionmaycauseapseudodementiaordementiasyndromeofdepression,which is both treatable and reversible, by contrast to
Alzheimer’s dementia.
Medications may slow the progressionWhile there are currently no medications available to
Dr. Bruce Sack’s expertise in medication
and behavioralmanagement of patientswith
Alzheimer’s disease is outstanding in the field.
Hiscompassionandcommitmenttohispatients
andtheirfamiliesishighlypraisedbythem,as
wellasbyotherhealthcareprofessionals.
Bruce M. Sack, M.D.
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preventorcurethedisease,onceoneisidentifiedashaving Alzheimer’s dementia, there are medications, such as cholinesterase inhibitors (donepezil,galantamine, rivastigmine) andNMDA receptorantagonists (memantine), which may slow the progressionoftheillness.
Treating secondary behavioral problemsIn terms of the secondary behavioral problemsthat a patient withAlzheimer’s dementia mayexperience, therearepsychotropicmedications thatcan ameliorate these behavioral symptoms.Theseincludeantidepressants,moodstabilizingagents,anti-anxietyandantipsychoticmedications.Ifonesuspectssheorherlovedoneissufferingfromanydementingillness, it is very important to undergo a thoroughevaluation, either by their primary care doctor,internist,aneurologistorageriatricpsychiatrist.
Roles and risks of primary caregiversIt is important to note that during the course ofAlzheimer’s dementia the caring physician andprimary caregivermust keep a close eye on thepatient’soverallmedicalhealth,aswell.Astheillnessprogresses,thereisfurtherimpairmentoflanguage,functioning and visual-spatial skills. Patientsexhibitagrowinginabilitytoperformpracticalandinstrumentalactivitiesofdailyliving.Thecaregivermustwatch over their loved one to supervise andmonitorthepatient’sroutinefunctioning,includingmaintaining adequate hydration and nutrition, bowel and bladder elimination and skin integrity. Onemustrememberthattheprimarycaregiverofa
What Is It?
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What Is It?
patientsufferingfromadementingillnesshasaverystressfulrole,andisexposedtothegriefandmourningprocessasshewatchesherlovedonesufferingfromthis devastating illness.Recent studies have foundthat up to 50%of primary caregivers of a patientsufferingfromadementingillnessindeedsufferfromdepressionthemselves.
Planning for a change of living environment and long-term careAlzheimer’s dementia is truly a devastating illness, notonlyforthepatientsufferingfromitbutfortheirfamilymembersandcaregivers.Familymembersareconfrontedwithmakingmanylifedecisions,notonlyforthemedicalcareoftheirlovedonebutplanningfor their living needs as this illness progresses. Itis best tomaintain patients in a familiar and safeenvironment; attempt to keep the patient in anindependentsettingaslongaspossiblebaseduponthepatient’sabilitytosafelyfunctionthere.Inadditiontotheabove-describedbehavioralproblems,patientswithdementia areathigh riskofwandering,oftendevelopdisturbancesoftheirsleepcycleand,later,as the illness progresses, can become incontinentofbowelandbladder.Itisthebehavioralproblems,most often agitated and combative behavior, andincontinence, that ultimately result in the loved one’s placementoftheirfamilymemberwithAlzheimer’sor other dementing illness in either an assisted living or extended care facility.This is often a difficult,emotionally traumatic, or ambivalent decision forfamilymembers. It is important early onwhen apatientsufferingfromAlzheimer’sisinamildstageto
Up to
50% of care-
givers
suffer from
depression
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discuss with them their wishes. This entails, naturally, a discussion of their living situation and how thismaychangeastheillnessprogresses.Decisionsmustalsobemaderegardingfinancialandestateplanning,aswell as issues regarding patient advocacy andlong-term care. This would include decisions over cardiopulmonary resuscitation, howaggressive onewantstheirmedicalorsurgicalcaretobeinthefuture,asmany families are ultimately confrontedwithmakingtheirpatients’status‘comfortmeasuresonly’or‘limitedcareonly’inkeepingwiththepatient’sandfamily’sethicalandmoralvalues.Itisimportanttohaveacompassionate,yetfrankandopen,discussionoftheseissues,notonlysothefamilymembersfeelcomfortableandagreeonthedecisionsthattheyaremakingwiththeirlovedone,butalsoforthephysiciansand institutions, whether assisted living, nursing home orhospitalscaringforthesepatients,tohavespecificknowledgeofthepatient’sandthefamily’swishes.
Alzheimer’s sufferers, again, experience a gradual,slow decline in their overall intellectual and cognitive functioning;thusatsomepoint,intheseverestages,not only are these patients suffering from severeimpairmentoftheirmemory,judgmentandinsight,andare disoriented, but again they may be incontinent and theirlanguagefunctionbecomesgrosslydisorganizedor diminished.At this point, familymembersmayindeedelicitthesupportofhospicecare.
Secondary illness and medical complicationsPatientswithAlzheimer’sdementiadonotdiefromtheillness,perse;rather,theyoftendevelopothercritical
What Is It?
Discuss
early on
a patient’s
wishes
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secondarymedicalproblemsandcomplications.Thesemay include decubitis ulcers (bedsores) related to motorandmobilityproblems.Theyarealsoathighrisk for aspiration pneumonia.Later in the illness,patientsmaybecomeanorexicandstopeatingoreveneatinappropriateobjects.Theirnutritionalstatuscanthensufferanddecline.FamiliesmaybeconfrontedwithdecisionsoverfeedingorPEGtubeplacementandfurtherintravenoushydration.Oftenatthistime,hospicecarebecomesacriticaldecisionforthefamily.It is best to have worked these issues through early on intheillness,especiallywiththedirectionandtheinputofthelovedonewhomaybesufferingfromminimalcognitivedysfunction,astagethatisprodromaleventotheearlymildstagesofAlzheimer’sdementia,sothatthefamilyhaveaslittleambivalenceandconflictemotionallyaspossiblewhentheyultimatelyhavetocarry through their loved one’s wishes. Waiting until theend,whenthefamilymembersandlovedonesareinastateofmourningandgriefthemselves,makesthisdecisionmuchmoredifficult andcomplicated.Thismay in some cases result in alienation offamilymembersordisagreementsoverthecareanddistributionofthepatient’sestate.Itisbesttoavoidthiswithearly,thoughtfulplanning.
What Is It?
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What Is It?
A delicate issue – when it’s no longer safe to driveOne issue which is very sensitive and delicate to thepersonsufferingwithAlzheimer’sdementiabutcriticaltoaddressistheabilitytodrive.ThepersonsufferingfromAlzheimer’sdementiaplaceshimselfandthepublicatriskifhedriveswhilecognitivelyimpaired.Thereis,obviously,ariskofthepersonwithAlzheimer’sdementiaaccidentallyinjuringhimselforothers,andthismustbeavoidedatallcosts.Therefore,whenthepatient’sillnessimpairsorientation,visual-spatialskillsandmemorytherebyincreasingtheriskofthepatientbecominglostorcausinganaccident,itisimperativethatthefamilyandcaringphysicianspointouttothepatientandlovedonesthatitisnolongersafetothepublicortohimselftooperateamotorvehicle.Theprimarycaretakerorfamilymembershouldelicitthesupportofthecaringphysician,whetherfamilypractitioner, internist,neurologistorpsychiatrist, inopenlydiscussingthiswiththepatientor,whenneedbe, then writing a letter to the state driver licensing bureauindicatingthatthepatientisnolongercapableofdrivingandrecommendingtherevocationoftheirdriver’slicense.Someinsurancecompanies,includingAAA,andseveralhospitalprogramsofferassessmentsofadriver’sabilitytooperateamotorvehiclesafely.Thisoftenisahands-on,objectiveevaluationprocessthatmaybehelpfulforthepersonsufferingfromamildtomoderatestateofAlzheimer’sdiseasetoaccepttheneedtogiveuptheirindependenceinregardstodriving.Familymembersshouldreassurethepersonthateitherfamilymembersoracompanionwillbeavailabletoprovidesafetransport.
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Preventive and helpful measuresPreventivemeasures for patients suffering fromAlzheimer’sdementiaincludethefollowing:1) As early as possible, undergo thorough andcomprehens ive eva lua t i on , med ica l ly,neurologically,andpsychiatrically.Ifonesuspectsdepression,inrulingoutagainothercorrectable,reversiblecausesofdementia(again,Alzheimer’sisnotareversible,treatablecauseofdementiaatthistime),itisveryimportanttotrytoidentifycognitiveandintellectualmemoryimpairmentasearlyaspossible.Thisistermed‘minimalcognitivedysfunction,’ and if othermedical, neurologiccauses,aswellasdepression,areruledoutandonesurmisesthatthepatientissufferingfromminimalcognitivedysfunctionorearly,mildAlzheimer’sdementia,itisimperativethattheyinitiateacourseof cholinesterase inhibitors, such as donepezil,galantamine,orrivastigmineassoonaspossible.Theseagentsare indicatedformild tomoderatestatesofAlzheimer’sdementia.Althoughtheydonotreverseorpreventtheillness,theyhavebeenshowntoslowtheprogressionofthedisease.TheNMDAreceptorantagonistmemantineisindicatedformoderate to severe stages ofAlzheimer’sdementiaandmaybeaddedtooneoftheabovethree agents.
Allofthesemedications,aswellasallpsychotropicmedications, whether antidepressants, anti-anxietyagents, mood stabilizing agents or antipsychotics,dohavesideeffects.Itisimportantthataphysician,whethertheprimarycarephysician,
What Is It?
Medications
slow the
progression
of the
disease
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generalpractitioner,familypractitionerorinternistorneurologistorpsychiatristmakesanappropriateandthoroughassessmentofthepatient,ensuringthatmedicationsareprescribedasindicatedinasafemanner.ThepatientwithAlzheimer’sdementiaoftendoesnothavetheabilitytoappreciatetherisksandbenefitsoftreatment,andmaylackcapacitytogiveinformedconsentforuseofpsychotropicmedications.Thisshouldbeopenlydiscussedbythetreatingphysicianwiththeprimarycaregiver.Itisimportant,veryearlyinthecourseofillness,thatsometrustedfamilymemberor, ifneedbe,court-appointee, serve as the durable power ofattorneyorlegalguardianformedicalandfinancialaffairs.
2) Other preventivemeasures thatmay helpwardoff or delay the onset ofAlzheimer’s dementiainclude:
•Maintainingawellbalanceddietlowinfatand cholesterol. • Exercise, especially aerobic exercise, in terms
ofwalkingthatmaintainsincreasedoxygenationto the brain through the maintenance ofcardiopulmonaryfunctioningisalsoimportant.
• Remaining intellectually stimulated is alsocritical.As people retire, it is important tomaintainsomeformofintellectualstimulation,whether through frequent and active reading,engaginginchallengingpursuitssuchasbridgeor other card games, or the performance ofvolunteerwork and part-time employment allcanbehelpfulactivitiesinwhichtoengage.
What Is It?
A trusted
family
member
should serve
as durable
power of
attorney
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FamilymembersorprimarycaregiversworkingwiththeAlzheimer’s patientmayfind it helpful to keephim oriented through normal daily conversation, writingdownimportantdatesorappointmentsonlargecalendarsforthem.Itisalsocomfortingandhelpfultoreviewphotographalbumsoflovedones,asthishelpsprovideconnectionaslongaspossible.
ConclusionAlzheimer’s dementia is, indeed, a devastating illness forthepatientandhisfamilymembers.Thoughtfulconsideration should be given to the primarycaregiver,assheisathighriskofmentalandphysicalexhaustion,aswellasdepression.Ensurethatrespitecareisavailableforthecaregiver.Thoughtfulplanningshouldtakeplaceattheearlieststagesoftheillness,throughfrankandopendiscussionswiththeprimarycare physician, the family’s attorney, accountantand financial advisors, as this illness is gradually progressiveandcanhavedevastatingconsequencesinthelatestages.Thisnecessitatesongoingandopen,frankdiscussionoftheseintegralplayers.
What Is It?
Have an early
frank & open
discussion
with primary
physician,
attorney,
accountant
& financial
advisors
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Diane Hischke, R.N., M.S.N., C.M.C.
Ms.Hischke’spersonalexperienceofcaringforher mother, who had Alzheimer’s disease, was instrumentalinherrecognitionoftheneedforprofessionalcaremanagementforthesepatientsandtheirfamilies.Shehashelpedhundredsofpatientsandtheirfamiliesonthisdifficultand
challengingjourney.
Caregiver’s Guide
Meeting Personal Care and Safety NeedsAs a professional nurse geriatric caremanager(PGCM) and a former caregiver of a parentwithAlzheimer’sdisease,thiswriterknowshowimportantgoodpersonalcareandsafetyinthelivingenvironmentarefortheAlzheimer’spatient.
Goodpersonal carepromoteshealth, comfort, andgood self-esteem.At somepoint in the caregivingprocessbathing,dressing,grooming,toileting,and/oreatingalmostalwayspresentproblemsforthepatientandthecaregiver.Howtheseneedsareaccomplishedmust be adapted to the changing condition of thepatient.Alzheimer’s patients sometimes developan unusual fear ofwater, especially in the showeror the bath tub.Make bathing and other personalcareaseasyandsimpleaspossible.Adailyshowerisoftennotneededunlessthereisincontinence.Aspongebathcanbeanalternative.Helpthepersonbrushhis/her teethorcleanhis/herdenturesdaily;thisisoneofthecommonpersonalcareneedsmostoftenforgottenorneglected.Chooseclothingwhichis easy to get on and off.When helpingwith theshowerordressing,observeforrednessorothersigns
Dental
hygiene
is a
commonly
forgotten
personal
care need
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ofbreakdownof the skin.Donot resist asking for
andacceptinghelpwhenneeded.Advicefromother
caregiversorprofessionalsmayhelpyouaccomplish
thesetaskswithaslittleupsetaspossible.
Caregiver’s Guide
How can youmake the dementia patient’s livingenvironmentsaferandmorecomfortable?Everyroomofthehouseshouldbecheckedforsafety.Therearedeviceswhichcanalertyouthatthepersonisupatnight or is going out the door. A medical alert device maybeneededtocalloutsidethehouseforhelp,ifthepatientcanlearnhowtouseit.Alistofcurrentmedications,doctors’namesandphonenumbers,andemergencycontactinformationshouldbekeptupdatedand in a visible location in the house. Nothing is more importantthanpreventingaccidentsforthepatientandburn-outofthecaregiver.
Choosing In-Home Hired CaregiversFrompersonalandprofessionalexperience,thiswriterknowsthatfinding,beingabletoafford,andkeepinggoodcaregiversforyourlovedonemaybethemostchallengingaspectofyourcaregiving.WhileyoucanhaveyourprofessionalGCMassistyouinmakingthehiringdecisionforin-homecare,youshouldkeepthefollowingpointsinmind: (1)relyoninstinctaswellasongoodresearch; (2)askforandcheckseveralworkreferences; (3)doacriminalrecordcheck; (4)doacreditcheck; (5)checkthedrivingrecord; (6)ask about training, qualif ications, and
experience;and
Finding,
affording,
and keeping
good care-
givers is
challenging
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(7) notewhether the person iswell-groomed,courteous,respectful,andarrivesontime.
Unlessyouhaveaninvolvedhealthcareprofessionalin the family or a hired professionalGCM, it isimportantthereisahiredprofessional,suchasanurseorsocialworker,onstaffatanyhomecareagencyyouchoose.
These additional issues canmake the differencebetweensuccessorfailureofin-homecare:
1. Affordability – What,ifanycostsarecoveredby insurances or are available through non-profitorganizationsatlowercoststhanthroughtheprivatesector?Arethefeesyouarebeingchargedreasonableforyourgeographicareaandfortheamountofcareprovided?
2. Realistic expectations – What kind ofservices can the caregiver provide, i.e.personal care,medication administration,companionship,shopping,cleaning,laundry,ortransportation?
3. Knowing what help is needed – Decide whatkindofhelpwillrelieveyourstressasacaregiverandbringcomfortandqualityoflifeto your loved one.
4. Consistency – Will the same person becaringforyourlovedoneconsistentlyorwillthe “guard” change constantly? Consistency is especially important for theAlzheimer’spatienttoavoidresistanceandagitation.
5. Back-up – What if the regular caregivercancels or doesn’t show up? Can familymembers be the “back-up?”Or, is 24-houremergency coverage essential?
Caregiver’s Guide
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Caregiver’s Guide
AprofessionalGCM can be of crucial help in adifficult situation, suchas ifyourparent refuses toaccepthelp,oriffamilymembersareindisagreementandcounselingisneeded.IftheAlzheimer’spatientorhis/herlive-inspouseorotherfamilymemberhashadabadexperiencewithahiredcaregiver,itwillbeevenmoredifficultforhim/hertoacceptanother.
Ifyour lovedoneneedsconstantcare in thehome,itcanbeachallengingandtime-consumingprocessto supervise that caregiving.This is where theprofessionalGCMcanbea“lifesaver”.Butsomegoodtipsare: (1) Trytosupporttherelationshipbetweenthe
caregiver and your loved one. (2) Bereadywithpositivefeedback. (3) Thinkabouthowyoucankeepthecaregiver
contentintheircaregiving,sohe/shewantsto stay and is more likely to treat your loved onewithrespectandkindness.
(4) Bealertforsignsofpoorcareorfraudulentbehavior.
(5) Never leave checkbooks, cash, or valuables laying about.
(6) Don’t dismiss your vigilance over time;becoming“toocomfortable”inthecaregiverrole is not unusual.
It’s time-
consuming
to supervise
in-home
caregivers
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How To Be A Good AdvocateBeing an effective advocate for your loved oneis essential. When escorting seniors to doctor appointments, the objectivity, knowledge, andprofessionalismofaGCMarepraiseworthyassets.However,ifthisisnotpossible,herearesomehelpfulhints. Beyond the earliest stages, the Alzheimer’s patientshouldnotgotohis/herdoctorappointmentsalone. He/she will forget what the doctor hasrecommended or will not tell the doctor about signs andsymptoms.Weallknowthatdenialisoften“aliveandwell” inour lovedoneswhoare compromisedwith Alzheimer’s disease. When seeing the doctor, it isimportanttoaskquestions;takenotes;andtogivethe doctor a goodhistory of symptoms, attemptedtreatment and results, etc.
Attitudeissoimportantwhenapproachinganissueofconcern.Approachanyissueasa“problem”thatneeds to be solved through input from all partiesinvolved.Assume,unlessprovenotherwise,thatthebestinterestsofthepatientareofutmostconcerntoall.
Thiswritercannotexpresstoostronglyhowimportantyouradvocacyisduringhospitalizationsandnursinghomestays.Thesearecrucialtimesforrecoveryandrehabilitation. Speak directly or communicate inwritingwiththestaffmemberwhocanaffectchange.Bepersistent;don’taccepttheunacceptable.TherearetimeswhenMedicarecoverageofstaysisdiscontinuedprematurelyandinappropriately.Sometimesthiscanbecorrectedbysimplytalkingwiththeprofessionals
Caregiver’s Guide
Advocacy
is crucial
during
hospitali-
zations and
nursing
home stays
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involved.Engageyourlovedone’sphysicianasanallyifpossible.LearnabouttheMedicareappealprocess.AprofessionalGCMcanhelpwith this process ifneeded.ThisPGCMhashadmore thanonefamilymemberreport,“Theystartedpayingmoreattentiontomy(spouse)andmeafteryouvisited.”
Preventing and Coping with HospitalizationOf utmost importance is preventing as manyhospitalizations as possible.The patient withdementia,whohasreachedthestagewherehe/sheisnotagoodreporterofsignificantchangesinhis/herbody andbodily functions, should be seen at leasteverytwotothreemonthsbytheprimaryphysicianasapreventativemeasure.You,thefamilycaregiver,orthehiredcaregiverscannotbeexpectedtoobservesignificant changes all the time. Find a primaryphysicianwho is not onlyknowledgeable, but alsopatientandattentivetoyouandyourlovedone.
Bealerttothe“SevenDeadlySinsofHospitalCare”:
Caregiver’s Guide
Delirium (Increasedconfusion,restlessness,and delusions) May be unavoidable, but return thepatienttotheirnormalroutineassoonaspossible.Decubiti (Bed-sores) Discuss skin care on admission.Dehydration Offerfluidsatleasthourlywhenyou visit. Never leave without assuring that the watercontaineratthebedsideisfreshandfull.Diminished nutritionAskthatthepatientbeweighedonadmissionandperiodicallyonthe
*
*
*
*
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Caregiver’s Guide
(Excerpted from Companion by Richard Powers, M.D., Fall 2005)
Patientswith dementiawill experience a furtherdeclineinmentalfunctioningwhenhospitalizedinanunfamiliarenvironmentwithstrange,newtreatments.Bringing familiar objects to the hospitalwith thepatient, e.g. abedor lap throw, familypictures, ora pillow, can help diminish the disorientation andconfusion.Talkwith thenursing staff and let themknowyourlovedonehasdementiaandinformthemofthepatient’sabilitiesrelatedtopersonalcareactivitiesand ambulation.Having a familiar personwith thepatient tohelpwithmeals,see that thepersongetsenoughfluids,andtoaccompanyhim/hertotestscanbeveryreassuringforthepatient.Enlistthehelpoffamilymembersorhireasitterifpossible.Oncethepatientwith dementia is diagnosed and stabilized
*
*
*
samescale.Report immediately to thenursesignificant losses or gains.Demobilization Discusswith staff theplantowalkthepatientorgethim/herupinachairtwoorthreetimesdailybasedonthepatient’sability.Drug Reactions Askaboutspecificmedicationsand their benef its. Observe and reportimmediately to the nurse or doctor significant changes.Diagnostic ConfusionDementiapatientsreactdifferentlytohealthproblems.Trytointerpretthe patient’s pain or physical symptoms andexplainthemtothestaff.
Dementia
patients
will
experience
further
mental
decline
when
hospitalized
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Caregiver’s Guide
physically,itisbestthattheybedischargedtoafamiliarandquieterenvironmentassoonaspossible.
Long Distance CaregivingWiththechangeinourcultureofmanyadultchildrenandgrandchildrenlivingfarawayfromtheirparents/grandparents, longdistance caregivinghas becomecommon.Thiswriter personally experienced thisphenomenon for five yearswith an ill parent, andtheotherparentandasiblingasthelocalcaregivers.Both the identifiedpatient,and thespouseorotherclosebyfamilycaregiver,needsupport.Longdistancecaregiving is difficult, but it can be accomplishedsuccessfully – throughmaking themost of yourvisits, respecting the need of the senior(s) for asmuch independenceandautonomyaspossible,andestablishing a good, local support network for theidentifiedpatientandforthelocalcaregiver(s).
Visitasoftenaspossible.And,makethemostoutofyour visits.✔ Are the basic activities of daily living beingaccomplished?
✔ Is the senior continuing with some social contacts orishe/shebecomingisolated?
✔ Aredoctors’visitsbeingkept?✔ Areneededmedical testsbeingcompletedinatimelyfashion?
✔ Are medications being refilled on time and taken correctly?
✔ Are home maintenance needs being met?✔ Arebillsbeingpaidappropriatelyandontime?✔ Canthepersonstilldrivesafely?
Patients
and closeby
family
caregivers
need
support
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✔ Doesyourlovedoneseemanxious,depressed,oroverly stressed?
Supportthesenior’sindependenceand/orautonomyasmuchaspossible.WithAlzheimer’spatients, theabilitytoaccomplishthebasicactivitiesofdailylivingindependentlyarelostovertime.However,therearewaystohelpthepatientfeelhis/herpersonalneedsandwishesarebeingrespected.Thisishow“autonomy”canbesupported,evenwhen“independence”islost.Forexample, thoughdrivingmayhave toceaseforsafetyreasons,theseniorcoulddecidewhetherhe/shewantsahiredcaregivertodrivehim/herintheirowncar or that belonging to the caregiver. Involve the senior and the local caregiver in decisions whenever possible.
Caregiver’s Guide
✔ Figure outwhat kind of help is needed andprioritizetheseneeds.
✔ Askneighbors,closefriends,andacquaintancesiftheyareinterestedandabletohelp.
✔ Local service clubs, senior centers, and churches orsynagoguesmayofferhelpifcontacted.
✔ Haveperiodicfamilymeetingstodiscusswhatisandisnot“working”andtore-plan.
✔ RefertotheNon-ProfitResourcessectionofthisbookletforadditionalinformation.
✔ Didyoutalkwithaneighbor,friend,orotherlocalinvolvedperson,sotheycouldshareobservationsabouthowthepersonisdoing?
Support
indepen-
dence and
autonomy
whenever
possible
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ConclusionDedicated caregivers ofAlzheimer’s patients areamongthiswriter’sheroes.Nolifechallengeismoredifficult. Some aspects of caregiving are commonsense;however,manycanbelearned.Theresultsofthis learning and good caregiving are increased quality oflifeforthepatientandforthecaregiver.
Caregiver’s Guide
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The Legal Path
Jim Schuster, J.D., C.E.L.A. Certified Elder Law Attorney
Jim Schuster’s practice focuses on clientswith
dementiaandhashelpedhundredsoffamilies.He
works closelywith the client, the family and the
healthcare providers to provide the best possible
outcomeforthistragicdisease.
The Legal Path Through Alzheimer’s Disease
Summary: Alzheimer’s Disease is a chronic degenerative condition that predictably results in along term stay in a nursing home. With recent changes totheMedicaidlaw,clientsandfamiliesmusthaveplansinplacemore than five years before entry into a nursing home. In other words, as soon as the diagnosis is made, action must start immediately.
Withaneffectiveresponseplanthelossofcontroloverone’saffairscanbeavoided.Patientscanname thetrustedpersonswhowilltakecareoftheiraffairsandbeassuredofreceivingthebestqualitycare,respectandindependence.
Alzheimer’sDisease:achronic,degenerativedementiathattakesawayaperson’sabilitytoliveindependently.Itproducestotaldependenceonotherstothepointofdressing,eatingandpersonalhygiene.Itoftenresultsinalongtermstayinanursinghome.Thepatientmaybecomeawardof theprobatecourtwith thecourtappointedguardianmakingpersonaldecisionsforthepersonwhoseassetswillbeundercourtsupervision.
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The Legal Path
InourexperienceworkingwithAlzheimer’sdiseaseand other degenerative conditionswe have foundthebestpathistohavea“careplan.”Itfollowstheprojectedcourseofthediseaseandaddressesquestionssuchas“Whowillpersonallyassistthepatientwithdressing? Or hygiene? Who will manage the financial affairsandcontracts?Howwilltheincreasingneedsof the personbemet?” Theplanwill identify theresources available both human and financial. It will setthestandardofcareforthosewhowillbeassisting.In addition the planwill consider the needs of thespouse,childrenandthepatient’sdesiretoleaveaninheritanceornot.Theplancoordinatestheresponseoftheclient’sfamilyandprofessionals.Theelderlawattorney’sroleistocreatethestructurebyspecializedlegaldocumentsneededtomaketheplanasuccess.
The overall processmay be summarized in fourpoints.
First:understandthecourseofthedisease.Whateffectwillithaveandwhenmayweexpectthosetooccur?
Second:Inventorythehumanresourcesofthepatient.Byhumanresourcesweaddressthequestions:whowillcareforandassistthepatient?Familymembers?When-24hoursadayorafterwork?Where?Inthepatient’shomeorthehomeofachild?Willfamilymembersneedcompensation?Forexamplewhatifadaughtertakesaleavefromworktobethe24hourcaregiver-willshebecompensated?
Inventory
your human
and
financial
resources
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The Legal Path
Willcommercialprovidersprovidepartorallofthecareneeds? If sowhat shouldwebudget for itemssuch as adult day care, in-home assistance, residential assisted living, and finally nursing home?
Inventorythefinancialresources.Whatfundswillbeavailable?When?Howmuchshouldbeallocatedtocareofthepatientandtotheneedsofthe“healthy”spouse?Istheequityinthehomeavailabletogeneratecashflow?Shouldareversemortgagebepartoftheplan?Isthehometobepartofthelegacythepatientwishes to leave to children? When do we use IRAs? Willgiftsbemadetoprotectassets?Whatinsurancedowe have and exactlywhatwill it pay for? Dowehavelongtermcareinsuranceforthepatientorspouse?Istheresufficientincomeforthe“healthy”spousetopayforlongtermcareinsuranceandallocatethesavingstotakecareoftheAlzheimer’spatient?
Third: create the legal structure thatwill ensuresuccessoftheplan.Thepatient’ssupportteammusthave the legal authority to access all assets and use themaccording to the patient’swishes. Powers ofattorney are a minimum and a living trust may be necessarycomponent.Othercontractsandagreementsmay be needed.
Fourth: get timelyupdated advice at thebeginningandduringthecourseofthedisease.Coordinatetheelder lawattorneywithotherprofessionalsasearlyaspossiblewhile thepatientcanstillparticipate indecisions.Stayincontactwiththeprofessionalsaslawsandruleschangeaswellasourplans.Aspouse
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maydevelopaseriousillness.Acaregiverdaughtermayhavetomoveawaytofollowacareerpath.Achildmaybelaidofforretireearlyandbecomeavailabletobeafulltimecaregiver.
Is It Too Late? No.Is it too late ifwehaveadiagnosisofAlzheimer’sorotherdementia?No.Thetestiswhetherapersonunderstandswhat theyaredoing. Forexample thepatientmay not be able tomake dinner, balancea checkbook or even understand what a check is. However, thepatientmaybeclearlyable toanswerthisquestion:“Whodoyouwanttotakecareofyourbusiness?”Manypatientswillsay“Mydaughter.Shedoesitalready.”Somesimplefurtherquestionswillshowwhetherthepatienthasthecapacityto“appoint”the child to take care of financial affairs,medicalmatters and other critical decisions.
Somequestionswillbetoocomplicatedforapatientadvanced in the disease process. For example, an“advance directive,” also known as “living will,” requires thepatient to identify theconditionswhenendof lifemedical treatmentwouldbe terminated.This subject is best addressed early in the diseaseprocessaspossible.
What do we do? What authority, agreements, and instructionsneedtobeputinalegaldocument?Howdo we do that? What should we not do? Fortunately theanswerissimple,buttheconsequencesofawrongstepcanbeenormous.
The Legal Path
It’s never
too late
to plan
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Do Not DoSome action is worse than doing nothing at all. Do notrelyuponjointaccountstogiveauthority.First,the only authority given is to access the account and secondly it adds unnecessary financial risk. Consider twotruestories:
In both cases the result could have been easily avoided throughproperplanning.
Avoid Probate?Resort to the probate court to appoint a guardianor conservator should be our last resort. Advance planningispreferred.Firstweconsiderwhethertherearetrustedpersonsthepatientcould“appoint”asan“agent”intheirpowerofattorney.Thisisinexpensive,privateandretainsthepatient’s independence. Theguardianprocessispublic,expensiveandresultsinlossofindependence.Attheendoftheprocessthe
The Legal Path
First. Daughter signed a nursing home contract for her father since she was “joint on the checking account.” They got into a dispute over the quality of care and did not pay the bill. Result: Lawsuit - Client had to pay nursing home $14,000 for her father’s bill.
Second. Son was joint on his mother’s checking account. She was in a nursing home and he knew that she did not want all of her money to go to the nursing home. He made gifts from the account. Some nursing home payments were not made. Result: Son was charged with criminal embezzlement.
Avoid
lifetime
probate
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patientislegallyjudgedincompetent,cannolongermakedecisionsoflegalimportandisunderprobatecourtsupervision.
Thecountyprobatecourtwillappointaguardianandconservatorforapersonwhois“legallyincapacitated.”Michigan law requires the court to first consider alternativestoguardianshipsuchaspowersofattorneyand trusts. Compared to the alternatives, courtproceedingsareexpensive,complicatedandinfringetoomuchonaperson’sindependence.Considerthesimplepropositionofsellingthehome.
Courtappointedguardiansoftendonothavethetimetopersonallyattendtotheperson.Toooftenthisresultsinfavorof“easy,safe”solutionssuchasputtingthepersoninanursinghome.
The Legal Path
Husband was in a nursing home. Wife was the probate conservator. She decided to sell home since she could not take care of it. Wife found a smaller condo. She had to get court approval to sell their house. Result: Over $4,000 in legal and court fees to get the permission
Active 85 year old man had a stroke and was judged by the hospital to be unable to manage his affairs. The court appointed an attorney as his guardian and conservator. The guardian decided he should be in a nursing home for his own safety. Result: Court fees in the thousands of dollars, and loss of independence before he was allowed to return to his home with assistance in his home.
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Insomefewcasestheprobateprocessispreferredornecessary.Forexample,theremaybenotrustworthyperson to act for the patient.A court supervisedguardian or conservator is then indicated. Sometimes resorttothecourtisnecessarybecauseofactionsofthepatient.SomeAlzheimer’spatientsgothrougha“paranoid”phaseandrefusetoallowanyassistance,even if needed for their own health. In such casethe intervention should be limited to the need and terminated,ifpossible,whenthepatientimproves.
Throughproperplanning theexpensive impersonalprocesscanbeavoidedandonecanstillhavesafety,security and care according to his wish and instruction.
What Does the Elder Law Attorney Do? Wecreatethelegalstructurethatwillshelterthepatientandplan.Specializeddocumentsmustbedraftedforeachcomponentoftheplan.Thepatientappointsthehelpers,givestheminstructionsandthengivesthemthe legal authority they need to bring in success.
Caregivers and assistants need legal authority to act.Medicalprovidersshouldrefusetodiscloseany informationtoanypersonwhodoesnothaveauthorityto receive it. Spouse, son, daughter: itmakes nodifference.Insurancecompanieswillrefusetodiscussdenials.Financialaccountholderswillrefuseaccess.Aswehaveseenaboveifacaregiversignsacontractshemaybesued,notthepatient.Howdoesonegivethe legal authority to act to another?
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Durable Power of AttorneyThisfundamentaldocument enables an “agent” to handle thepatient’sbusinessandfinancialaffairs.Thepatientcandictatewhowillhelpandexactlywhattheyareauthorizedtodo.Thepowerofattorneyisthekeythatallowstheagenttodrivethefinancialplan.
Thedocument for theAlzheimer’s patientmust beexceptionally broad and powerful.The agentmustbeabletomakegifts,tocommingleproperty,todowhatever is needed to protect family and assets toqualifyforgovernmentbenefits.Inadditionitneedstobeimmediatelyeffectivesothatthenamedagentcan act immediately when needed.
Health Care Power of Attorney This is the most critical document the patientmust have.Thedocumentmust satisfy the “HIPAA”privacy rules;otherwiseallmedicalinformationwillbebarredfromtheagent. With thedocument thepatientcanhavethebestofcare,justwhenneeded.Secondopinions,specialists?Noproblem.Inadditionthepatientmusthave an “advance directive” or “living will” to address thedifficultendoflifeissues.Considerforexampletubefeedingandhydration.Doesthepatientsayyesorno?Whatabouthospicecare?Opinionsvary.
Revocable Living Trust The living trust isthestrongestguaranteethatthecareplanwillbefollowed.Thepatientselectsthetrusteewhowillusethetrustassetstocarryoutthecareplan.Thetrusteewillhiretheprofessionalcaremanagerwhowillassessthepatientandadviseonthebestcourseofactiontoimplementthecareplan.Alzheimer’sdiseasepresents
The Legal Path
Documents
need to give
authority
and
direction
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avariety of care options ranging from in-home, toassisted living to nursing home. The costs and quality varywidely andmust be closely supervised.Howcanthepatientbeassuredofthebestcare?Thetrustdraftedtoeffectthecareisthebestanswer.
What of the “healthy” spouse?WhilewemustfocusontheAlzheimer’spatienttheneedsofthespousemustalsobeconsidered.Whileresourcesmustbedirectedtothepatient,thepresentandfutureneedsofthespousecannotbeoverlooked.We cannot presume that the “healthy” spousewillremain healthy. Statistics show that the stress ofcaregiving results inprematurehealth failure.Whothenwilltakecareofthepatient?Whatstandardofcarewillbefollowed?
Ataminimumthespouseshouldbeincontrolofthefinances.Allassetsshouldbeinthatspouse’snameortrust.Thatleadstothequestions“Whatwillhappentothoseassetsifthespousediesfirst?”Willthepatientbeabletomanagemoney?Willthepatientbeinanursing home? At aminimum the spouse shouldmake a new Will that directs how the assets will be distributed.Forexample,willthepropertygoto:theillspouse;thechildrenwhowilllookaftertheirparent;orbeheldintrustforthepatientandthendistributedtothechildrenafterdeath?
Bestpracticecallsforthespousetohaveanelderlawattorneydraftatrustthatincludescareinstructions.Supposethespousedieswhilethepatientisstilllivingat home. Should in-home care be used? Who will supervise?Isamovetoanassistedlivingfacilityin
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order?Howwillbebillsbepaid?Shouldthehomebesold?Ifthepatientneedsanursinghomethenthehomemaybeprotectedforthefamily.Thetrustmustgivedirectionforeachscenario.
Whomakes the decision on the ill spouse’s careplan? Given the complexities ofAlzheimer’s andtheconfusingandbewilderingarrayofoptionsandservices the service of a professional is stronglyrecommended. A geriatric care manager can make anassessmentandreporttothetrusteewhowillthenadminister the trust accordingly.
Onceagain,thefinancialneedsofthe“healthy”spousemustbeconsidered.Thespouseshouldconsiderlongterm care insurance and review reverse mortgages well inadvanceoftheneedtospendlargesumsofmoneyonthecareofthepatient.WhentheneedsofbothareconsideredthepaththroughAlzheimer’sdiseasebecomes manageable, in the financial sense.
What of Caregivers?“Caregivers have needs too.”The needs of thecaregiverareoftenoverlooked–evenbythecaregiver.Caregivingisnotonlyanheroicactofselflessness,it is very valuable. 24 hour around the clock care can costfifteendollarsanhourandthatisover$131,000peryear!Thereisnoreasonwhythecaregivershouldnot be financially stable and have adequate health insurance.Forexample,ifadaughtertakescareofherfatherandshedoesnothavegoodhealthinsurance,herfathershouldcoverherinsurancepremium.
The Legal Path
Consider
financial
needs of
“healthy”
spouse
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Thecaregiverdoesmorethanattendtothepersonalpatient. Often the caregivermust take care of allbusinessofthepatient. It is the caregiver who talks to doctors, handles insurance claims, pays all bills of the patient and anything else that needs to be done. The caregiver needs legal authority to do what needstobedoneandprotectionfromclaimsofothers.Forexample,whatifthecaregiverhiresanagencytoprovideassistanceandthenfirestheagencyforpoorperformance? Will the caregiver be sued under abreachofcontractclaim?
Caregiver ContractWhatdoesthecaregiverneedbesidestimeforhimorherself?Whatifthecaregiverforegoesemploymentsoheorshecantakecareofthepatient?Ifcaregivingresults in financial sacrifice then the caregiver should receivecompensation.Whatifachildmovesintothehomeoftheparenttoprovidecarearoundtheclock?Whatisthefairvalueofthechild’sservice?Acarecontractmaybedraftedbytheelderlawattorneytoprovideabasis for reasonable compensation to thechild.Whatiftheparentmovesintothehomeofthechild?Howmuchofafinancialcontributionshouldtheparentmake?Shouldtheparentlivefree,coverexpensesorpayrent?Whatoftheadditionalservicessuch as laundry andmeal preparation? Shouldthe parent pay a rate thatwould be comparable tocommercial assisted living?
The answers to the questions are as unique and personalasarethepeopleinvolved.Differentpeople
The Legal Path
Caregivers
have
serious
legal needs
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have different needs and abilities. The elder lawattorneycandraft thedocuments thatwillgive thelegalstructuretotheuniquecareplanforthepatientand those who assist.
Nursing Home - Medicaid Nursing home expenses are frightfully expensive.PeoplewhoarenotmillionairesmustlooktoMedicaidtopaythe longtermcarecosts.Medicaidrulesarecomplicatedandalwayssubjecttochange.Itisabigfederalandstateprogramwithmany,many“loopholes,exemptions,deductionsandallowances.”Medicaidis necessarily part of the estate plan/care plan forAlzheimer’spatients.
Medicaid Allows Asset Protection for SpousesTheMedicaid nursing home program allows thecommunityspousetohaveallassets,howeveritisnotautomatic.Thespousemusthireanelderlawattorneytoeithergetacourtorderorsetupaspecialtrusttoprotectassetsfortheathomespouse.Unfortunately,mostspousesareneveradvisedthattheyhavesuchoptionsorthattheyshouldconsultwithanelderlawattorney.
Medicaid Should not Control Financial PlanningMedicaid’sruleshaveasignificantimpactonplanning.Thecurrentfiveyearlookbackruledrivesthepatienttodivestofassetsassoonaspossibleupondiagnosis.Buthowandwithwhatconsequences?Howshouldthespousebeprovidedfor?Howcantheneedsofthe patient bemetwhile still providing for someinheritanceforthechildren?Medicaidallowsgifts
The Legal Path
Medicaid
gives
spouses
special
protection
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of assets to adult disabled children.Can the childmanage the assets? Is a trust needed? Medicaid allowsgiftof thehome toa live inchildcaregiverwhomeetscertaintests.Howisthatdone,whatarethetaxconsequencesandwhatoftheparent’splansforotherchildren?Withtheappropriatedocumentstheneedsofthepatient,spouseandfamilycanbemet.
Asset ProtectionWhatdowedoabout“assetprotection”?Theshortword is “do it now”–Medicaid has a f ive yearlookback. However ifwe probe deeperwemightask“Whatareweprotectingassetsfor and what are we protecting assetsagainst?”What plan arewetryingtoaccomplish?Thepatientdoesnotexisttoprotectassets,rathertheassetsaretheretoprotectthepatientandlovedonesThepatient’sassetsshouldbemarshaledtoproducethehighestqualitycare,withtheleastexpensetothepatientandfamilywiththemaximumutilizationofavailableprivateandpublicbenefits.TheguideforyouonthepathofAlzheimer’sisdonotgiveassetsawaywithoutaplan-thatwillcutoffoptionsandleadtoaprematurenursinghomeplacement.Doseeklegaladvicewhenevernecessarytolearnofbenefitsandoptionsavailable.Whenthenursing home is unavoidable do use all Medicaid allowances for spouses, caregivers and disabledchildren.
The Legal Path
Use
Medicaid
allowances
for spouses,
caregivers
and disabled
children
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ConclusionAlzheimer’sDisease follows a predictable course.The time it takes to traverse the course may not be knownbutthedestinationis.Withinformedplanningthepatientandfamilymayexpectthebestpossibleoutcome.Theonlywaytoreliablyprotectandeffectthepatient’svaluesandgoalsiswithawellconsideredplan.Inthatwaythepatientandfamilycanlookto
The Legal Path
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Intelligent Care
Sandra L. Lyness, Ph.D.
Dr. Lyness has counseled those receiving and giving
care.Sheiskeenlyawareofthestressandemotion
thatcaregivinginvolvesandthereforeisdedicated
to providing supportive andpractical advice for
all involved.
CAREGIVER STRESSORS:The first rule in becoming a caregiver is to takecareofyourself; this iseasiersaid thandone. Theunpredictability of caregiving is one of themoststressful elements. Timepressure is next.Gettingenoughtimetodowhatyouneedtodoinyourownlifeoftenseemsimpossible.Findingtimeforyourfamilyandyourselfbecomespartoftheproblem.Makingdecisionsthatarenotnecessarilycomfortableforyouoryourlovedoneprovokesguilt,anger,defensiveness,control. Fatigue is a natural result of caregiving,resulting in irritability, not being able to think straight, having to rely on resources that we do not know well enough to trust.
One of the most stressful aspects of being a caregiver is loss of identity. Youarenotadaughterorson;youarenotaparent.Moreoftenthannotyouloseyourfeelingsofsecurityandadequacy.Theworstoftheworstisthatlifeisunpredictable.Livinginthepresentismostdifficult,livinginthepastissad,andlivinginthefutureisveryfrightening.Thiscanbeveryominousanddepressing. It is rewarding that,oncethelovedonedies,themajorityofcaregiversfeelasenseofcompletionthattheyhavedonewhatneeded
The first
rule for the
caregiver
is to take
care of
yourself
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to be done, and made a serious contribution to the lifeofsomeoneimportant.Theresilienceofhumanbeingsisamazing.Manytimesthecaregiverendsupempoweredtodothisinmanyotheraspectsoftheirlife.Themostimportantthingyoucandoifyouareacaregiverisjotdownwhatyouhavelearnedthathelpsyoutobeeffectiveandfeelthatyouareaccomplishinganddoingsomethingpositiveforsomeone.Networkyourknowledge;giveit tothosethatyouknowarefacingthistomorrow.Andperhapsmostimportant,give it to your children so they do not have to reinvent history the way you have.
Affects of Caregiving:Caring for a parent or debilitated spouse is fraught with disagreements, anger, obstinacy, stubbornness, defiance, resistance and, of course, love. There is alsoguilt,forthecarerecipientwhoisimposingonachildorspouse,andguiltforbeingangrybyboththerecipientandgiverofcare.Interestingly,thelongeroneis a caregiver the less caring one may become, due to alltheburdensitplacesonthecaregiverandfamily.
All caregivers or receivers are not equal. Some have an abundanceofempathyandlovetotakecareofothersandassumeresponsibility;othersaremoreorganizedandhonestlyhatedoingthechoresofcaregiving.Weneedanarrayofcaregivingoptionstoaccommodateourindividualdifferences.
The physical andmental condition of the elderlychallengeour spirits. Stress is the result, and fear,includingworrying,“Willthishappentome?”Many
Intelligent Care
Caregiving
is fraught
with stress-
producing
emotions
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timestheonsetofdementia,whetherAlzheimer’sorotherdementias, is theelephantinthelivingroom.We see it and we don’t want to talk about it. What is worse,dementiaisoftennotseenbyotherswhodonotlivewiththeperson.Theyseethesweetgentleold person.When one loves the elderly it is heartwrenching to see illness anddependency; you justwant to make it go away.
If you are lucky, you are caring for a relative forwhomyou have loving feelings andmemories ofdays past. Sometimes, however, the relationship isanexaggerationofearlierdayswhichmightnothavebeenpleasant. It isunbearablystressful tohave totakecareoftheparentwhowasneithersupportivenornurturing.Sometimesthechildnowgrownupthinks,“Iwilltakecareofmymotherorfatherandtheywilllovemebecausenowtheyneedme.Iwillrepairthedamageofmychildhoodbybeinglovedforbeingthecaretakerparent.”NO,youareheadedfordisaster.Theparentwhowasnotwarminitially isbound tobeworseinoldage.Infact,asolderpeopleagetheylosetheirsenseofempathy,asthepartofthebrainthatcontrolsthisdoesnotagewell.Empathyallowsustofeelthewayothersdoandwithanappropriateconscienceonesoftenstheiremotions.Whenpeopleage, theybecome focusedon themselves andverynarcissistic.Their aches and pains, their disturbedroutines and habits becomemore important thananyone else’s. They sometimes do not think outside themselves enough to realize how they can hurt others with comments.
Intelligent Care
Caring for a
parent who
was not sup-
portive nor
nurturing is
unbearably
stressful
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Anotherpitfallofcaregivingariseswhenbothparentsarealiveandrefusetoallowanyoneelsetohelpwiththemoreinfirmone.Thehusbandmayrefusetohavehelpinthehouseexceptforthechildren;oh,theguilttripthere.Nowtheson,daughterorin-lawchildrenare“oncall”tonotonlypitchinandsupplementcarebuttofigureouthowtoconvincetheparentstogotothe doctor when necessary.
Many elderly resent strangers, otherwise called home healthcare providers, in their home.They dread“assistedliving”,andifthatisbad,“nursinghome”soundsworse.Weneedtodevelopalanguagewhichis not offensive to the elderly and certainlymorerespectful.“Seniorcommunities”ismuchbetter.
Sibling disagreement on roles is another pitfall. Too manycooksdospoilthesoupandsiblingrivalryisalive in old age. Everyone wants to make the decisions andnoonewantstobetoblame.Ifpossible,setupaspokesmanforthefamilywithaparentorrelative.Withwhomdoestheelderlypersoncommunicatewithbest?Manyelderlyneedtofeelimportant,respected,protectedandincontrol.Mostcaregiversneedtofeelin control, not guilty, protective, and appreciated.Appreciationcannotbeemphasizedenough.Asimple“thankyou”canmakeorbreakstress.Aphysicianwhotellsacaregiverthegoodjobtheyaredoingisprovidingatherapeuticservice.
Critically ill patients - When we are addressing criticallyillpatientslikecancervictimsordegenerativenervous system, autoimmune systempatients, the
Intelligent Care
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caregiver role is all the harder.Most patientswiththese diseaseswant to test their control over life,and they can be difficult because of psychologicalandneurological implications.Mostpeoplearenotawarethatdepressionandanxietyarephysiologicalconditionsthataccompanyautoimmunediseasesuchas MS, diabetes, rheumatoid arthritis, etc. These emotional conditions are a result of the imbalancein cortisol levels in the body which control emotion. Cardiacpatientsoftenhavedepressionasaresultofthe oxygen deficiencies. Cancer treatment invariably causes psychological reactions such as cognitivedef icits of memory, confusion and depression.Numerousstudieshaveconfirmedthepsychologicalramificationsofillnessandmedications.
GRIEVING ISSUES:
Theissueofgrievingisextremelyimportant.Grievingforthosewelovebeginsfarbeforedeath.DementiasuchasAlzheimer’sdestroysthepersonmentallyandthenphysically. Not only are thememoriesof thepersonwithdementiadiminishedbutthecaregiver’smemoryofthevital,intelligentandnurturingparentceasestoexist.Thecaregiver,outofsympathy,love,andcompassion,exertseffortineverywaytodealwithgrieving while they are caregiving. This tears the heartoutofmostpeople.Notonlydoesthecaregivergrieve,butalsograndchildren,siblings,andfriendsofthelovedone.
Intelligent Care
Grieving
for loved
ones begins
far before
death
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Thegrievingfollowingthedeathofthepersonyouhavebeentakingcareofissomewhatdifferentthanthe grieving that goes on while they are living. Now suddenlytheywillneverreturn.Adjustingtoforeverisoneofthemostdifficultpsychologicaladjustmentswe have. It takes time, making your own decisions, andnotlettingotherpeopletellyouwhenitistimeto“goon.”Memoriesofpeoplewelove,overaperiodoftimebecomecompartmentalizedinapartofourbrain.Wegoonwiththeotherpartsofourlifebutmemories we’ve shared, whether it be childhood with a parent,amarriageofmanyyearswithaspouse,orthefriendshipofaverydearfriend,needtobepreservedinawaythatallowsonetoproceedwithlifeandyetbericherforthememory.Thememorymaybepainfulatthebeginning,buttalkingaboutit,takingcontrolofdecision-making, and deciding who you want to share yourmemoriesandsadnesswithareveryimportant.Averyclose friend,a supportgroup,a therapist,aphysician,orifyouarereligious,clergy,canbeveryhelpful.Thedecisionmustbemadebythecaregiver.Themajorquestionmostpeopleaskis,“WillIevergetover this?” My answer is you will not get over it, but youwillbeabletohandlethefeelingssothatyou’llneverlosethememoryoftheperson,yourself,orthememoriesofthelifeyouhavehadwiththatperson.Itwilltaketimeandthegreatestgiftyoucangivetosomeoneyouloveisthepainofgrieving.Itmeansyou do miss them, it means you love them, it means you want them back, but it also means that you know theywouldnotwant you to ruin your life becausethey have died.
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Intelligent Care
Not all grieving is the same. There are times when the personwhohasdiedhasnotbeenahealthypersoninyourlife.Whensomeonedieslikeanabusive,angry,notnurturing,remoteparentwegrievetheparentwewishwehad.Welosethehopethatwewilleverhavetheidealizedparent.Thebestsolutiontothistypeofgrievingistore-parentyourselfthroughyourchildren.Ifyoudonothavechildren,thisisstillpossiblethroughrelationshipswithchildrenoffriends,family,andevencommunity outreach. There are many ways to survive theinadequateparent.
SURVIVAL STRATEGIES: Howcanyousurvive?Therewasastudyyearsagoaboutpsychologicalhardinessthatfoundtheattitudewith which you enter a situation determines the way youhandleit.Ifyouruminateaboutthecontentoftheproblem,whatishappening,theoverload,thelosses,theemotions,anddonotforceyourself tomovetothe challenge of solving the problemwith lots ofmodifications built-in, then you will not survive. The three largest challenges are energy, time and finances. Whenyourfamilyreachestheageof50,startplanningahead.Youhavetopaceyourenergyandknowwhentocryforhelp.Youneedtoengageacadreofpeopletohelpsoyourtimeisnotstolenfromyou,and you find your middle age is stolen by your parent’s old age.Youwillbecomeresentful.Knowyourowntemperament,acceptit,andworkwithitnotagainstit.Getinstructioninangermanagementifyourparentwon’t.Thisisatimethatangerisoftenmisplacedontothe caregiver who needs to manage it.
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Planahead.Talkwithyourparentswhiletheyare still healthy. If theywon’t talkwith youmakeyour plan regardless. Prepare to have to persuadethemtoacceptservicestheywill“hate”youfor,butonceinstituted,theywilladjust.Icannottellyouhowimportant it is to get services in place early.Age-proofthehomewhentheelderlypersoncanmakethedecisions,notwhentheybroketheirhiporshoulder. Haveyourparentsinterviewhomehelp,suchasahousekeeperwhohasmultipleskillslikehelpingwiththebills,etc.Hirethemearlyon.Theyneedtodotheinterviewing,hiringandfiring;theyneedcontrol.Themorecontrolyouputintheirhandsearlythelessyouwillhavetofighttogetlater.Lookatfacilitiessuchasseniordaycarecenters,elderhostelprograms,assisted living, or others early. Don’t assumeyourparentscan takecareofthemselves.Setupasupportsystemofpeoplewhodropin,call,etc.tomakesuretheyareOK.Neighborsorteensintheneighborhoodcanbehelpful. Theconceptofhousingandmonitoringoftheagedisatopicallitsown.Usevideocamerasinthehomefor thosewhoinsist theylivealoneandtheirfamiliesneedtomonitortheirsafety. Select yourmedical care carefully for bothbedsidemanner, expertise, and availability.OlderpeoplehateemergencyroomssobesureyourphysiciananswerscallsonSunday.Chooseaphysicianwhoiselderfriendly.Formanyelderlygoingtothedoctorisasocialevent.Expertisewithauserfriendlystaffisprimary.Asimplecallfromthedoctorattheendofthedaywhenapatienthassomethingworrisomewillmakethemfeelimportantandtakencareof.
Intelligent Care
Select
medical
care for
bedside
manner,
expertise &
availability
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Acttheminuteyouseesymptomsofdementia;don’tletitcreepup.Medicationscanbeinstrumentalin lengthening the timeof clarity andmemory fordementiapatients.Anewdrugtoday,Memantine,isespeciallyhelpfulwithmoderatetosevereAlzheimer’s.Don’t split academic hairs about nomenclature.Dementiasaresimilarnomatterwhatitis.Ifyouthinkaconditionisnotbeingattendedinatimelyfashion,forcetheissue.Caregiversneedlessonsinleadership,negotiation and assertiveness. Ask others to help. It ismost important tohaveasupportteam.Gettoknowyourpolice&firedepartmentasyouareboundtomeetthemwiththe911 call. Designate a neighbor who can go to the house ASAPif911iscalledandyouareadistanceaway.Letprofessionalsbethemessengersofbadnewsanddeliverinformationyourparentcannotandwon’thear.Haveasecondopinionprofessionalinthewings.Bytheway,thedentistisalsoaveryimportantpersontoalerttoproblems.Ifahousingfacility,likeassistedliving,isnecessary,talkwiththeminpreparationandassesswhich person there can help convince yourparent.Olderpeoplegenerallyhavemorerespectforauthoritythanfortheirkids.Beflexible;ifonemethodofhandlingdoesnotwork,hearwhattheolderpersonissayingandthenchangeslightly.Noonepersonislikeothers.Tailoringyourhelpisimperative.Thisiswhereatherapistcanoftenhelp.Whenyouaretiredandoutofideasanobjectivepersonwhoworkswiththis in a variety of situations can help primeyourthinking to continue. Don’tletguiltor“should”runyourlife.Youshouldnotdothisjusttobeagoodchild,youshould
Intelligent Care
Don’t let
guilt or
“should”
run your
life
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not feel responsible tomake your parent happy.Honestly,noolderadultIknowexpectsoldagetobepleasant.Thegoldenyearstarnish. Workwith yourfinances and those of yourparents the best you can to affordwhat you need.Medicaidhelpisnotgreat,butitisnotterribleeither.Allowotherstotakethemtolunch,andvisit.Peoplelikehairdressers,barbers,supermarketcashiersareallpartofthesupportsystem. Don’tfeelyouhavetorespondtothecomplaintsoftheolderperson.Listenwithempathyandreflectfeelings.Listeningwithoutasolutionisfine.Say,“Iwishitweredifferent.Iwouldhatetohavetowearthose things.” “I realize you don’t want anyone here, butitisbettertohaveSuzythantobeinahospital.”Listening and allowing the older person to grieve for who and what they were is important. Don’tencourageyourparentstoretiretilltheyneedto,andiftheywanttofurthertheireducation,trytogetthemintoadultlearningprogramswheretheywill meet other seniors and exercise their minds and feelintelligent. If your parents are out of town it is harder.Realizeatsomepointyouwillneedtobringthemtoyour area.Connect to thebest possiblehealth careagency where they live. Grandchildrenaregreatandcangetapointacross better than you. Remember they are looking and judging,astheyseethemselvesintheirgrandparentsastheyarestrugglingwiththelossoffreedomslikedriving.
Intelligent Care
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Wheneverpossiblegetolderpeopleintotheworldforstimulation;goingtothestoreisimportantiftheycangetaround. TelevisionandVCR’sorDVD’saregreatexceptthey sometimes can’t figure them out. Combination TV’sarebestwiththesmallestnumberofcontrols.Thatgoesforallappliances.Fewerknobsisbest. Humorisimportant.Evenifitseemsthereisnotmuchtolaughat,afunmovie,dancing,orexercisedoeswork.Elderscanbetakentofacilitiesthatprovideamusementonadailybasis.Calledrespitebecauseitisnotpermanent,itdoesrechargebothcaregiverandrecipientbatteries.
Thereisnowaytoavoidthestressofcaregiving,butthere isawaytosurviveit.Becomeapartnerwiththereceiverof thecare, rather thanbeing thegiverwhogetsnothinginreturn.Mostofall,ascaregiver,treatyourselfaswellasthecarerecipient.Whateveryougivetothepersonyoucarefor,aslongasthereisgentleness,support,helpindecision-making,andintent to improvethequalityof their life,youhavegivenyourfullmeasure.Pleasealsogivethesamequalitiestoyourself.
Intelligent Care
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Challenging Behaviors
Kelley Watson Fulkerson, MPA
Kelley Watson Fulkerson has over twenty years
experienceworkingwithpersonswithdementia.
Kelleyprovidesinservicetrainingforprofessional
caregiversandcommunitypresentationsforfamily
caregivers.
Working with Challenging Behaviors
Ethelwascrying,poundingherfistonthediningroomtable, and,with a distressed lookonher face, toldanyonewhowouldlistenthatshecouldnotpossiblyfix dinner for “all these people”. This behaviorhappeneddaily in theAlzheimerSpecialCareUnitof the nursing homewhereEthel lived. The staffwould gently remind Ethel that she didn’t have to preparedinnerandthatwewouldbecookingforher.Thesereminders,though,didnothingtostopherdailybehavior.OnlyafterlookingattheenvironmentthatEthelwasapartof,wasasolutiontothisbehaviorfound.Thestaffbegantonoteexactlywhattimeofdaythisbehaviortookplaceandwhatwasoccurringatthetimeofthebehavior.Whatthestaffdiscoveredwasthatthebehavioroccurredbetween2:45and3:00p.m.Thatwasthetimeoftheemployeeshiftchange,fromdaytoafternoonstaff.Itmeantthatnowtherewas double the amount of staff on the unit,morenoise,moreconfusion,andthatmeantmoredistresstoEthel.StaffbegantowalkEtheltoherroomat2:30andbroughtherbackoutat3:30,afterthedayshiftleftthefloor.Thecrying,poundingandanxietyoverfixingdinnerstopped.
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Alzheimer’s disease affects the cognitive ability ofthose diagnosed with the dementia. As a result of this loss of cognitive ability, those diagnosedwithAlzheimer’s disease often exhibit difficult orchallengingbehaviors.Caregiversconfrontedwiththesebehaviorsareoftenatalossastohowtopreventor decrease these behaviors.
Four Causes of Challenging Behavior
When caring for a personwithAlzheimer’swhodisplayschallengingbehavior,therearefourfactorsyou should consider: health problems, situationsin the environment, causes related to the task, and communicationproblemsaspossibletriggersforthebehavior.
Health
Causes related to health problems may include new medications, a change in vision or hearing status, and acuteillnesssuchasaurinarytractinfection,theflu,aheadacheorstomachpain.Itcanalsobeachangeinachronicillness,suchasanincreaseorsuddendropinbloodsugar,oranincreaseinbloodpressure.ThepersonwithAlzheimer’smightalsobeexperiencingaboutwithdehydration,constipationorevendepression.Whenthepatienthasachangeinmedicalstatusandisunabletodescribetothecaregiverwhatthepainorirritationfeelslike,orexactlywherethepainmaybelocated,theremayonlybeanon-verbalresponsesuchascrying,anincreaseinagitationorconfusionand lethargy.
Challenging Behaviors
Consider
four factors
when work-
ing with
challenging
behaviors
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Environment
Challengingbehaviors that occur as a result of theenvironment such as noise, size and number ofpeopleintheroom,anunfamiliarplace,toomuchortoo little stimulation, and an area with no way-finding cues,canleadtoagitationandconfusion.Pacing,anattempttoleavethearea,crying,poundingontables,andphysicalandverbaloutburstsmaybeashowofangerandfrustration.ThosewithAlzheimer’sdiseasemay take knick knacks or other belongings off ofdressersorshelvesandputthemintodrawersastheirwayofsayingtheycannotcopewiththeextraclutter.Theymaytrytoleavetheareaasaresultoftheextraconfusion.Thepersonmaypaceahallwaywithoutstoppingtositiftherearenovisualcuestoremindthem to rest, such as couches or chairs.
Communication
When assisting with tasks such as bathing or dressing, the challenging behavior can be caused by either the complexityofthetaskorthewaythedirectionsarecommunicatedbythecaregiver.Arushed,impatient,angryorcondescendingtoneofvoicebythecaregiverwillbereflectedbackbythepersonwithAlzheimer’sdisease. Theperson affectedby the dementiawillnot know or understand how to act in many common situations. They look to those around them, such as their caregivers to give them the clues or cues as to howtoact.Theyreflectbacktheattitudeandactionsoftheircaregiversastohowtheyshouldbehaveinagiven situation.
Challenging Behaviors
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Complexity of task
ThepersonwithAlzheimer’sdiseasecanno longerunderstandconceptsoftimeorconceptsofactivities.Telling your loved one with Alzheimer’s disease that he has a doctor’s appointment at 3:00 p.mdoesn’tmeanthesamethingasitoncedid,asthatpersonnolongerunderstandstime.Hisconceptofanactivitysuch as “getting ready for bed” or “getting readyfordinner”hasbeenlostwiththeprogressionofthedisease.Itismucheasierforthepersonwithdementiatounderstanda task, suchas “here is yourpajamatop,putyourarminthissleeve”or“hereisyourplatewithyourdinner,pickupyourfork”.Youcanalsobedemonstratingtheactionasyouspeak.
CaregiversofthosewithAlzheimer’sdiseaseshouldremember that all behavior hasmeaning. If youare tired, excited, surprised, frustrated or angry,yourbehavior reflects thoseemotions. Weneed torememberthatthepersonwithAlzheimer’shasthosesameemotions,butmaynothavethewordstoexpressthem. They may have to resort to non-verbal messages to let us know. These non-verbal messages can become challenging behaviors when we don’t understand or miss-read them. Finding the meaning and emotion behindthebehavioristhejobofthecaregiver. Bybecoming a compassionate detective,lookingforthecuesandcluesoftheirlovedone’sbehaviorcanhelpturnthatbehaviorfromchallengingintoacceptance.
Challenging Behaviors
All
behavior
has
meaning
Become a
passionate
detective
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Challenging Behaviors
EVERYDAY DO’S AND DON’T’S
Coping with the Alzheimer’s Victim’s Anger, Anxiety, and Paranoia
Thisprofessionalgeriatriccaremanager(GCM)anddaughter of anAlzheimer’s victimwell knows thatcopingwithanAlzheimer’spatient’soverwhelmingfeelings, such as anger, anxiety, and paranoia, isdifficultinmanywaysforthecaregiver.
ItisstillfreshinmymindhowIfeltwhenmymother’sangerwasinappropriatelydirectedatme.Andthatwasmore than15years ago! I felt shocked, hurt,andconfused.And,thosepersonalfeelingsmadeitdifficultformetorespondinahelpfulway.
Whenrespondingtothe ANGERofanAlzheimer’svictim:
DO NOT take the emotion and associated behavior personally.Itisasymptomoftheillnessbeing“playedout”inyourlovedone.He/shehaslittlecontrolofthefeelingoraction.Infact,heorshewill, afterwards, probablynot even recallthe incident.
DOvalidateorstateinacalmmannerandinsimplewords the feeling you think your loved oneis experiencing. For example, state, “Youmustbefeelingangryrightnow.Iunderstandthat.”Surprisingly,thismayquicklydissipatethe feeling the person is having–like you’ve
Diane Hischke, R.N., M.S.N., C.M.C.
Do not take
the emotion
or behavior
personally
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suddenly stuck a pin in a balloon and the airdeflates!
DOthenreassurethepersonwithakindtouchonthearm or shoulder and a statement such as, “I’m here to takecareofyou”or“Therearemanypeopleherewhocareaboutyou.”
DO remove the person from the stressful place orsituationwhileguidinghim/herinacalmandreassuring way.
DOthenofferadistractionhe/sheislikelytoaccept,e.g.offertositwiththepersonandreadabook,lookatpicturesoftheirgrandchildren,orgoforawalkandsmelltheflowers.
DONOTask ifhe/shewants todo thisdistractingactivity, but suggest, in a very kind and encouraging manner that they do it with you.
DO look for early signs of frustration in activitiessuch as bathing, dressing, or directing movement fromonelocationtoanother.Ifevident,delaytheactivitytemporarily.
IcanstillrecalltheembarrassmentandanxietyIfeltwhen my mother became anxious about the ringing telephoneinmykitchen(whichshedidn’trecognizeasaphoneanylonger).Shebegantryingtotakethephone receiver apart,while the caller (one ofmynursingstudents)wasontheotherend!
Challenging Behaviors
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WhenrespondingtotheANXIETYofanAlzheimer’svictim:
DO scan the environment to determine what may be triggering the anxiety. Can this be eliminated orcanthepersonbegentlyremovedfromtheenvironment?
DOmaintainacalmandpleasant facialexpressionandtoneofvoice.
DO make reassuring comments, such as,“It’s okay” or“I’mheretohelpyou.”
DO know that anxiety is most common in the early stagesofdementiawhenthepersonstillhasafairamountofawarenessofhis/hersurroundings,butmaymisinterpretthemasadangertohimself/herself,e.g.theringingphone.
DOavoidsituationsandplaceswherethereareloudnoises,manyactivities,andmanypeople.
DO know that the stage where this is most common isusuallytemporary.
DOconsultyourdoctoriftheanxietyisunrelenting;interfereswith necessary activities of dailyliving, such as bathing; or prevents adequatesleep of either theAlzheimer’s victimor thecaregiver. Anti-anxiety medication may be orderedtemporarilytoeasethedistress.
Challenging Behaviors
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WhenrespondingtothePARANOIAofanAlzheimer’svictim:
DONOTarguewith thepersonor try to convincehim/hertheparanoidbelief isuntrue. He/shehas lost the ability to be rational.
DOlookforlostarticlesorassistinlooking.
DOacknowledgethefeelingsthepersonishavinginrelationtotheobjectoftheirparanoia.Ifhe/shethinks someone is coming into the house and takingbelongings,state,“Iknowhowimportantyour things are to you.”
DOtell thepersonwheretheirvaluablesarestoredforsafekeeping.
DOtell thepersonallof theprecautionswhicharebeingtakentokeephim/hersafe.
DO consult a geropsychiatrist for medicationmanagement if the paranoia is severe, verydisturbing, and unrelenting. Antipsychoticmedicationmay verywell be helpful and berequiredonlytemporarily.
Challenging Behaviors
Do not
argue or
try to
convince
the person
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Effective Communication Techniques
Effective communication techniqueswith personswith dementia are often the opposite of how onemight speakwith awell person. ThisprofessionalGCM believes this is why it “does not come naturally” tomanypeople.Itmaybetotallyforeigntowhatacaregiverisaccustomed.However,itcanbelearnedifthecaregiverisopentochangeandlearning.
DOalwaysapproachthepersonslowlyandfromthefront.
DOmakedirecteyecontactbeforespeaking.
DOeliminatedistractingnoises.TurnofftheradioorTV.Guidehim/hertoaquietarea.
DO remember that how you look and sound, i.e. facialexpression,bodylanguage,toneofvoice,calmnessortenseness,ismoreimportantthaneven what you say.
DOpointordemonstratewhereyouwantthepersontogoorwhatyouwantthepersontodo.Repeatthisifnecessary.
DO give one instruction at a time, e.g. “Please sit down here” and then, “Now you can eat your lunch.”
DON’Taskquestionshe/sheisunlikelytobeabletoanswer.Forexample,don’taskifhe/sherecallsadaughter’snameorwherehe/shehad lunchwithhisfamily.
Challenging Behaviors
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DOuseshort,simplesentencesandconcrete,familiarwords.
DOpausebetweensentencestogivethepersontimetorespond.
DOuseanotherwordwiththesamemeaningiftheperson doesn’t seem to understand your firstword.
DO always speak to the person in a respectfulmanner.
DON’Tspeak in frontof thepersonas ifhe/she isnot there.
This writer believes that the dementia patient’sanger,anxiety,paranoia,anddifficultyspeakingandunderstanding language are tremendous barriers to qualityoflifeforboththeAlzheimer’svictimandhis/her caregivers. This mental and emotional distress can be diminished or eliminated through the caregiver’s acceptance,understanding,andknowledgeofeffectiveways to communicate and intervene.
Challenging Behaviors
These
emotions
lower the
quality of
life for both
patient and
caregiver
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Financing the Care Long-Term Care Insurance
Dorothy McMahon, LUTCF,CSA,CLTC,LTCP
What is Long-Term Care?
Long-TermCareisabroadrangeofservices.Itiscarethatisexpectedtolastlongerthan90days.Alzheimer’sdisease,forinstance,isprogressiveanddegenerative.Thereis no cure! Sometimes it progresses slowly, gradually.Sometimesitmovesveryquickly.Lifeexpectancyafterdiagnosiscanbeanywherefrom8to20years.
WhenapersonisdiagnosedwithAlzheimer’s, they require Long-TermCare.Eventually,someonewillhavetohelpthemconstantlywiththeirincreasingneedforADLhelp(ActivitiesofDailyLiving),aswellashelpwithwhatareknownasIADLs(InstrumentalActivitiesofDailyLiving).Theseareallofthethingsthatwemustdoeachdaytogetus through the day; we do them without even thinking. As Alzheimer’sdiseaseprogresses, medical needs become a reality as well.
TheActivitiesOfDailyLivingAre:1 bathingandpersonalhygiene2 dressing
Adiagnosis ofAlzheimer’sDisease, or any othersimilarlydevastatingchronicillness,foranymemberofafamily,canalsobea diagnosis of financial and emotional ruinforthatfamily.DorothyMcMahon’slife’sworkistohelppreventthatfromhappening.Sheis aCertifiedLong-TermCare InsuranceSpecialistwhosemission is tohelpeducate familiesabout therapidly-growingneedweallwilllikelyhaveforLong-TermSupportServices. ShehasbeenaLong-TermCare insurance specialist since 1987, and has soldthousandsofLong-TermCareinsurancepolicies.
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3 eating,feedingoneself4 toileting5 continence6 transferring
TheInstrumentalActivitiesofDailyLivingAre: 1 basic house cleaning2mealpreparation 3 laundry4regularmaintenance/lawncare5shopping/travel 6 medication management7billpaying/handlingmoney8transportationtodoctors,pharmacies,church
Alzheimer’sdiseasewillerodeaperson’sabilitytocareforhimorherself.Inthebeginning,aspouseorchildmay“cover”forthepatient.Eventually,family,andsometimesfriendsandneighbors,willtrytofillthegaps.Theymaytakecareoftheyard,runerrands,providetransportation,preparemeals,cleanthehouse,dispensemedications,andprovidecompanionship.Inevitably,astheneedforcareincreases,itmaybenecessarytofindanappropriateLong-TermCarefacility.
What Is Long-Term Care Insurance?
Long-Term Care insurance is an insurance contract that guaranteestopayfor:1. asudden,unexpected,andenormouscontinuingexpensethatcould seriouslydepleteorexhaustafamily’slifelongfinancialresources.
2. the exhausting effects placedon the caregiver’sownpersonalhealthasadirectresultoftheintensestrainofdailycaregiving.
3.eitherprofessionalorinformalcare.
Financing the Care
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Long-Term Care insurance is not limited to “nursing home”carefortheelderly.Itisactuallydesigned,infact,toallowapersontoreceiveextendedcare,bothmedicalandwithADLhelp,right in their own home,orinjustaboutanyother“settingofchoice”thatisavailableintheircommunity.Itmaywellbetheonlysuccessfultoolwehavetokeepapersonoutofanursinghomewhentheyneedcare.Long-TermCareinsurancewillpayforcarerequiredbyanAlzheimer’spatient.Whenweareunabletotake careofourselves,weneedtohiresomeonetodoit!
Caregiving—The Love that Places our Own Lives in Serious Jeopardy!
Thereareonlyfourkindsofpeopleinthisworld Those who have been caregivers Those who are caregivers Those who will be caregivers Those who will need caregivers ~ Rosalynn Carter 1997Nobodyexpectsthatthey’regoingtobecomeacaregiversomeday. And, unless someone has actually lived through it,noneofusreallyhasmuchofanideahowall-consumingthe job can be, nor for howmanyyears their 24/7/365servicesaregoingtoberequired.Acaregiver’slifewillchangeabruptly,andoftenoverwhelmingly,asaresultofasimplephonecalloneday,oracasualvisit.Youmaystopbyjustforafriendlyvisit,andunexpectedlyfindunopenedmail,medicationthatwasnottaken,spoiledfoodintherefrigerator, the need for bathing and hygiene, and thehome in total disarray.
Adevotedcaregiverwill takecareof their lovedoneasmuchandaslongastheypossiblycan;regrettably,however,usually at tremendous cost to their own health. The symptomsofstresswillquicklybecomeevident—denial,anger,socialwithdrawal,anxiety,depression,exhaustion,
Financing the Care
Long-Term
Care
Insurance
is not
limited to
nursing
home care
for the
elderly
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sleeplessness, irritability, and lack of concentration, tonameonlyafew.Mostcaregivers,moreconcernedfortheirlovedonesthanthemselves,failtodealwiththeseemotionsuntiltheirownhealthandwell-beingsuffer.
Suddenly, a personwhowas already juggling roles andresponsibilitiesmustmeet additional roles, and greatly intensifiedresponsibilitiesandtimecommitments,whichtheywillstruggletomanage.Thecaregiverquicklyfeelsoutofcontrol,andmustnowalsograpplewiththeirownanxiety and depression. As a direct result, caregiversthemselves become greatly susceptible to heart attack,stroke, and even a nervous breakdown.
How Long-Term Care Insurance Ensures Better Health for Everyone!
WiththehelpofLong-TermCareinsurance, an Alzheimer’s patientcanbecaredforbetter,athomeornot,andlonger,eitherbyprofessionals,byafamilymemberorfriend,orlikelybyacombinationofallof these. Thepolicywillpay forsomeor forallof thecare,allowingvisitswiththeAlzheimer’spatienttobeenjoyableandrelaxing,notstrenuousandaggravating.Thepolicywillalsopayfor“respite”caresothattheprimarycaregiverwillgetarestfromtimetotimeasneeded.Whenthediseaseprogressesand more care is required,thepolicywillpayforAssistedLiving Care;thenforcareinanAlzheimer’sfacility; and lastly,itwillalsopayforcareinanursinghome.
TheanswertocaringforanAlzheimer’spatientisrightinfrontofoureyesifwewillonlyrecognizeit.However,aswithanyotherinsurance,thepolicyMUSTbeinplacebeforetheneedarises,whichmeansbefore the diagnosis.
We must always remember that the caregiver, whether spouse,child,orfriend,is“atrisk”aswell.Thehealthycaregiver will very likely not stay healthy for long.
Financing the Care
Long-Term
Care
Insurance
is a very
compre-
hensive
product
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Consequently, especially in the casewhere the primarycaregiveristhespouseofthepatient,thatspousesimplymust have anotherLong-TermCare insurancepolicy inplaceforhisorherowneventualcareaswell.
Apieceofadvicefromnearly20yearsofexperienceasacaregiverandanLTCexpert:ifyourspouseorparentisdiagnosed with Alzheimer’s disease, or any chronic illness forthatmatter,andyoubecomethecaregiver, the first thing youshoulddoispurchaseLong-TermCareinsurance for yourself! Caregiving can be devastating to caregivers.
So! How Do We Pay For Care?
Thereare3waystopayforLong-TermCare:
1) Youcanberich(payforourowncare) 2) Youcanbepoor(Medicaid) 3) YoucanhaveLong-TermCareinsurance
Pleasewatchoutforapopular“Medicare Misconception.” MostpeoplethinkthatMedicarepaysforthecarethatisrequired by someonewithAlzheimer’s. Unfortunately,that is simply not true. The care required by someonewith Alzheimer’s is called “custodial” (basic) care, that is, assistancewiththe“activitiesofdailyliving”mentionedabove.ApersonwithAlzheimer’sdiseasedoesnotinitiallyrequireskilled,ormedical,care;andyetthatistheonlytypeofcarethatMedicarewillpayfor;andthen,onlyforaverylimitedtime,andonlyifseveralrequirementsaremet first.
Where You Can Receive Care
Long-TermCare insurance is a very comprehensiveproduct. Pleasemake the time and effort necessary tothoroughlyresearchandunderstanditbeforeanypurchase.ItcanpayforANYlevelofcareinANYsetting.Itwillpay
Financing the Care
Please
watch out
for a
popular
“Medicare
Miscon-
ception”
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Financing the Care
Long-Term
Care
Insurance
is a true
act of love
to protect
your family
forskilled(medical)care,forintermediate (orstepdown)care,andforcustodial(orbasic)care.Itwillpayforcareinanyandallofthefollowing: your home anassistedlivingfacilityahomefortheaged a board and care homeadultfostercarehomeAlzheimer’scarefacility adult day care hospicecarerespitecare a nursing home
When To Buy Long-Term Care Insurance.
Wecan’tbuycarinsurancerightaftertheaccident,canwe?Nordoesithelptobuyhomeowners’insuranceafterthefire.Thatisthenatureofinsurance.Inthesameway,yousimplycannotpurchaseLong-TermCareinsuranceonceyouhaveadiagnosisthatrequireslong-termcare.IthastobeputinplaceBEFOREitisneeded.AdiagnosisofAlzheimer’sdisease, orANYmemory loss, will PRECLUDE anindividualfromeverbeinginsurable.
Whether we are 30 or 75,ifwewanttoprotectourfamiliesfrompossible financial and emotional ruin,we shouldbeputtingLong-TermCare insurance inplace.Withouthesitation, Long-Term Care insurance should absolutely be aconsiderationwhenwereachourfiftiesandarethinkingseriously about retirement.
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Financing the Care
THE ESSENTIALS OF LONG-TERM CARE INSURANCE FOR SHOPPERS
Can You Afford Long-Term Care Insurance?
Or, atTODAY’S costs, can you afford to reduce yourretirementincomeby$200,000?TheannualaveragecostofcareinMichigantodayis$74,000,anditincreaseseachyearby5%.Thesenumbersarebasedontheaveragelengthofcare,whichisnow2.7years.Theaveragecaregivingtimeathomeis4.3years.Therealcostofcare,whenyouneedit,willbedeterminedbywhatkindofcareyouneed,andinwhatpartofthecountryyouwillbelivingwhenyou need it.
Long-Term Care insurance is available to anyone age 18 orolder.Ifthereisafamilyhistoryofchronicillness,oneshouldbeputtingcoverageinplaceassoonaspossible,toobtainlowerpremiumsandguaranteeinsurabilityasapersonages.
YoucanbuyaLong-TermCareinsurancepolicyfromaprivateinsurancecompany,fromanagent,orthroughthemail. You can alsobuy coverageunder a grouppolicyofferedbyyouremployer,orasamemberofanassociation.Thefederalgovernmentandsomestatesoffercoveragetotheiremployeesand their families,and to their retirees.Thesepoliciesarevoluntary,andthepremiumsarepaidbytheindividuals.TherearealsosomelifeinsurancepoliciesthatincludebenefitsforLong-TermCare.PoliciesarealsoofferedbysomeContinuingCareRetirementCommunities(CCRCs).
Those living on a fixed income or with limited assets may notbeacandidateforLong-TermCareinsurance.
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Financing the Care
Thecostofapolicytopayforlong-termsupportservicesisbasedon: *Ageattimeofpurchase *Health,height,andweight*Typeofpolicy:Comprehensive,Facility-Only,or
HomeHealthCareonly*Eliminationperiod(deductible)*Dollaramountofbenefit(andwhetheritwillbepaid
out as a daily or monthly benefit)*Numberofyearsthebenefitwilllast;i.e.,for2,3,
4,5,10,12years,oralifetime*Premiumdiscountsthatmightbeavailableforgood
health,spouse/domesticpartner,maritaldiscount,residential,orfamilydiscount
*The amount and typeof options (riders) that areaddedtothepolicy,suchas:
•Inflationprotection(automatic),5%simple orcompound
•Periodicinflationprotection •FuturePurchaseOption •Non-forfeiturecoverage •Paid-upsurvivorship •Restorationofbenefits •Indemnityrider •Calendardayeliminationperiod •Waiverofhomehealthcareelimination
period •Sharedcarebenefit(1policytocoverboth
partners)
There are three BASIC types of policies available today.
Thetypeofpolicyyouselectwillalsodeterminethepremiumpaid.
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A “reimbursement”policy isalso referred toasan“expense-incurred”policy. This typeofpolicywillpayyou,oryourcareprovider,uptothedailyormonthlybenefitpurchased,afteryouhave“qualified”forthebenefitsbasedonbeingunabletoperformanytwoofsix“activitiesofdailyliving”(ADLs),whichare:bathing,dressing,eating,toileting,continence,andtransferring;ANDahealthcareprofessionalhas“certified”thatheorsheexpectsthatyouwillneedthiscareforatleast90 days. Thisisreferredtoasa90-daycertification.Or,youwillneedcareorsupervisionduetoaseverecognitiveimpairment.Ineithercase,youmustalsohavesatisfiedtheeliminationperiod;andaPlanofCare,includingLong-Termcareservicestobeprovided,mustbeinplace.
An “indemnity”policywillpayasetdollaramount(aperdiemamount)afteryouhaveestablishedeligibility(thesameasforthereimbursementpolicy),fordaysyoureceive a covered service.
A “disability”model,orwhatisreferredtoasa“purecash”policywillpayaflatdollar amount afteryouaredeterminedtobebenefiteligible(again,thesameasforthereimbursementpolicy),regardlessofwhetherservicesarereceivedorwhoprovidesthem.
AllthreeofthesetypesofpoliciesarewhatarereferredtoasFederally“TaxQualified”policies.In1996,CongresspassedtheHealthInsurancePortabilityandAccountabilityAct,referredtoas“HIPAA.”ThisactensuresthatbenefitspaidfromLong-TermCare insurancepolicies thatmeetits standards are not considered to be taxable income. Qualifiedpremiumsmaybedeductibleasmedicalexpenseswhen certain thresholds are met.
Financing the Care
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2006 Long-Term Care Insurance Premium Deductions Limitations
Age Limits40orless $280.0041–50 $530.0051–60 $1,060.0061–70 $2,830.0071andover $3,530.00
Thereareveryfewinsurancecompanies thatevenofferwhat is known as a Federally “Non-Tax Qualified” Long-TermCare insurance policy. Congress and theU.S.DepartmentoftheTreasuryhavenotclarifiedthisareaofthe law. Benefits received may or may not count as income (alsonotyetclarified).Thereareotherdifferencesintheactualpolicies.Sincetheyarenotreadilyavailabletotheconsumer,itisrecommendedthatapersondiscusswithatax consultant or legal advisor the tax consequences in a particularsituation.
Benefits will vary from one company to another.
Itisimportantthatyourlong-termcareprofessionalgivesyouchoices,andexplainsthebenefitsofeachpolicyheorsheispresentingforconsideration.Somebenefitsincludedintax-qualifiedpoliciessoldtodayare:
A. Funds to pay for homemodifications, durablemedical equipment, informal caregiver training,homesafetychecks,providercarechecks,medicalalert systems
B. Careadvisoryservices,respitecarebenefitsC. International coverage, bed hold benefitD. Protection against unintentional lapse of thepolicy
E. Homemaker services, chore services,meals onwheels
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Financing the Care
F. Guaranteedrenewability,latepaymentprotectionG. Alternate services benefits, needs assessment
benefit Premium Payment Methods
A. Annual, Semi-Annual, Quarterly, or Monthly, by automaticwithdrawal from your checkingaccount
B. Doublepaythepremiuminyearonesoastopayareducedpremiuminsubsequentyears
C. Payallpremiumsbyage65,orpayallpremiumswithinthefirsttenyearsofowningthepolicy,orreducedpremiumpaymentsatage65
The Next Step
IfyouhaveaninterestinLong-TermCareinsurance:
1) Contact your local Area Agency on Aging, at 517-373-8230.
2) Contact theOffice of Financial and InsuranceServices, at 517-335-3167.
Consumer Tips For Purchasing Long-Term Care Insurance.
1) AlwaysseekoutaprofessionalwhospecializesinLong-TermCare insurance. (If you had a heartcondition,youwouldnotseeageneralpractitioner;you would seek out the best Cardiologist you could find.)
2) Makesureyouarecomfortablewiththeagent,thecompany,andthepolicy.
3) Be sure the agent gives you choices and optionsbeforeyoumakeafinaldecision.
Always
seek out a
professional
who
specializes
in Long-
Term Care
Insurance
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4) Checkthehistoryofrateincreasesofthecompaniesyou are considering, and also check the financial stabilityofthecompany.Thereareratingagenciesthatyoucancheckwith.Theyareasfollows:
A.M.BestCompanywww.ambest.com FitchIBCA,Duff&Phelps,Inc.
www.bankwatch.com Moody’s Investor Service Inc.www.moodys.com
Standard & Poors www.standardandpoors.com Weiss Ratings, Inc. www.WeissRatings.com
5) Be absolutely sure that the company you decideto purchase your policy from does “MedicalUnderwriting”atthetimeyouapplyforcoverage.Whetherornotapolicywillbeissuedtoyoudependson themedical information received fromyourphysician.Eventhoughanagentisabletoacceptan application for coverage, he isnever able to guaranteethatapolicywillbeissued.
6) Comparetheoutlinesofcoverage,andbesureyouunderstandwhatyouarebuying.YouragentMUSTpresentyouwithAShopper’sGuidetoLong-TermCare insurance, and heMUST also provide youwithanOutlineofCoverageforeachpolicytheyarepresentingtoyouforconsideration.
7) Don’t buymore coverage thanyouneed; there issuch a thing as overkill.
8) Make sure all information on the application iscompleteandaccurate.Itbecomesapermanentpartofyourpolicy,whichisalegalcontractbetweenyouandthecompany.Ifitisnot,thecompanycanrefusetopayclaimsorevencancelyourpolicy.Notifyyouragentandthecompanyifthereareerrorsormissinginformation.
9) Don’t EVERuse cash to pay a depositwith theapplication,ortopayapremium.“Don’tevermakeacheckpayabletoyouragent.”
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10) Contactyouragentorthecompanyifyoudonotreceiveyourpolicywithin60daysofapplication.Alwaysmake sure familymembers or a specialfriendknowsthatyouhavethepolicy,andmakesureat leastoneof themknowswhereyoukeepit.
11) Afteryou receiveyourpolicy, takeadvantageofthe“30dayfreelookperiod”andreadthepolicyovercarefully.Makesurethatyouunderstandthepolicy,and,thatthebenefitsareexactlywhatyouchose;andreadovertheapplicationonceagaintomakesurethatallinformationthatyousignedyourname to is correct and accurate.
12) Reviewyourpolicywhenchangesoccurinyourlifeto make sure coverage is in line with your needs.
13) AlwayscontactyouroriginalagentbeforedecidingtocancelyourLong-TermCareinsurancepolicyand buy a new one.
The Following Will Illustrate The “COST OF WAITING” To Purchase Long-Term Care Insurance
Theannualpremiumsarebasedontheaveragecostofcaretoday,theaveragelengthofcaretoday,anda“verybasic”policyforasinglepersoninverygoodor“preferred”healthstatus.UnderstandthattheseareNOTrecommendations,butexamplesofcostsandcoverages.Apolicyfora30-yearoldwould,withoutquestion,bedesigneddifferentlythanonethatwouldbepresentedtoa70-or80-yearold.
MonthlyMaximumEliminationInflationAnnualBenefitLifetimeBenefitPeriodProtection Premium
Femaleage30$6,000$216,000(3years)60DaysNone$56140$67450 $842 60 $1,347 61 $3,25480$10,152
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Onceyou are approved for coverage, basedonmedicalrecordsreceivedbythecompany’sunderwritingdepartmentandinformationonyourapplication,aswellasatelephoneinterviewinsomeinstances, therearenoexclusionsforpre-existingconditions.
Thereisnopriorhospitalstayrequiredbeforeaccessingbenefits,andallpoliciesmustpayforAlzheimer’sdisease.Besurethepolicyyouapplyfordoesnotexcludecoverageformentalandnervousdisorders.Afteryouknowwhatthepolicycovers,makesureyouunderstandtheexclusionsandlimitationssoyouknowwhatthepolicydoesnotcover.
Take your time. Do not be pressured into purchasingsomethingyoudonotunderstandcompletely.
Once you have aLong-TermCare insurance policy, itbecomesextremelyvaluable. Ifyouareapproachedbysomeonetoreplaceyourpolicywithadifferentone,contactyourcurrentagentbeforedoingso.Therewerespecificreasonswhyyoupurchasedthepolicythatyoudidwhenyoudid.Never,underanycircumstances,cancelapolicythat you have before you have been approved for, andHAVE,anotherLong-TermCareinsurancepolicyinplace.
CONCLUSION
AdiagnosisofAlzheimer’sdiseaseisdevastatingforfamilymembersaswellasforthepatient.Allare“inittogether”asafamily. Thecaregiverneeds justasmuchcareandattentionasdoestheAlzheimer’spatient.WhenaspouseorparentisdiagnosedwithAlzheimer’sdisease,welosethemtwice—firsttothedisease,andthentodeathitself.Ourobjective is to takecareof“everyone.” BybuyingLong-TermCareinsurance,wecanguaranteequalityoflife,independence,control,choice,andpeaceofmind.Nearly
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asimportantly,wecanavoidbeingaburden,andwecanprotectourassets.Long-TermCareinsuranceisatrueactoflovetoprotectourfamilywhethertheyarethepatientORthecaregiver.Anycaregiverofafamilymemberwilltellyouemphatically,“Iwoulddoitagain!”
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Area Agencies on Aging
TheAreaAgenciesonAgingareregionalplanning,coordinating,funding,andadvocatingorganizationsforavarietyofservicestoolderadults.Establishedunder the Older Americans Act in 1974, they include 14 agencies in Michigan. Their activities include fundingoflocalservicesauthorizedundertheOlderAmericansAct, suchasmeals,personalcare,adultday care, counseling, long-term care advocacy, and a hostofothers.Servicesareavailabletoadultsaged60 and over, regardless of income.They offer aninformationandreferralprogramtoassurethatolderadultsandtheirfamilieshaveaccesstoinformationabout available resources.
AAA1-A,Detroit,Hamtramck,HighlandPark, GrossePointes,HarperWoods, 1-313-446-4444 AAA 1-B, Macomb, Oakland, Livingston, Mon- roe, Washtenaw, and St. Clair Counties, 1-800-852-7795 AAA 1-C, Other Wayne communities, 1-800-815-1112
Greater Michigan Chapter Alzheimer’s Association20300 Civic Center Drive, Suite 100Southfield, MI 48076248-351-0280
The Alzheimer’s Association is an outstanding non-profit service organization. TheGreaterMichigan
Non-Profit Resources
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Call your local Area Agency on Aging or look in the YellowPages under “DayCare–Adults” formorelistings.The following list of non-profit settingsis not screened for quality.The settings are listedalphabetically:
AFriend’sHouseAdultDayServices,15945CanalRoad,ClintonTwp.,MI48038586-412-8494Threelocations:ClintonTwp.,Warren,andRomeo
Non-Profit Resources
Chapterisoneofthelargestandmostactivechaptersinthecountry.TheyoffersupportiveservicesfortheAlzheimer’svictim,andthefamilyandprofessionalcaregivers. Their services include respite care,consumer education and professional training,familyandpatientsupportgroups,24-hourtelephonehelpline, care consultation, research, SafeReturnprogram,andadvocacy. In thepastfewyears,anddue in much to their advocacy, Alzheimer’s disease has become a household word and is receiving more ofourtaxdollarsforresearchandforservicesforitsvictimsandtheirfamilies.
Adult Day Care Settings
For theAlzheimer’s patient and their caregiver(s)adult day care settings may be an excellent resource. Theytypicallyoffersocialization,safetysupervision,medicationmonitoring,andmealsforthesenior.Theyofferrespiteforfamilycaregivers.Theseniorwouldtypicallyspend4-8hoursthereduringthedaytimeandthenreturntohis/homeatnight.Manynon-profitandfor-profitorganizationsintheDetroitmetroareaoffer
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Non-Profit Resources
Alzheimer’sDisease&RelatedDisorders–GreaterMichiganChapter20300 Civic Center Drive, Ste. 100Southfield, MI 48076248-351-02802nd site at Trinity St. Mark’s Church9315 Fort Street, Detroit, MI
BeaumontDayRehabandHealthCenter4949CoolidgeHwy,RoyalOak,MI48073248-655-5800
BotsfordCommonsAdultCareCenter21400ArchwoodCircle,FarmingtonHills,MI48366248-426-6930
Charlotte’s Place, 22300 Bon Brae RoadSt. Clair Shores, MI 48081586-779-7050
FarmingtonHillsSeniorAdultDivision2860011MileRoad,FarmingtonHills,MI48336248-473-1826
JewishVocationalServices29699 Southfield Road, Southfield, MI 48076248-233-40002nd site is Dorothy & Peter Brown Jewish Community Adult Care Program6720WestMaple,WestBloomfield,MI248-661-6390
Older Persons’ Commission650 Letica Drive, Rochester MI 48307248-608-0261
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ProvidenceSouthfieldAdultDayHealthCenter24400 Civic Center Drive, Southfield, MI 48034248-353-6280
Sheltering Arms Adult Day Care Center North3300SouthAdamsRoad,AuburnHills,MI48326248-537-33002nd site at 18310 West 12 Mile RoadSouthfield, MI 48076, 248-557-7373
WaterfordSeniorCenter6455HarperDrive,Waterford,MI48329248-623-6500
Legal Resources
LegalHotlineforMichiganSeniors1-800-347-5297Forfreelegaladviceandinformationoverthetelephonefor those age 60+
To find an elder law attorney, www.NAELA.org
Forinformationaboutcertificationofelderlawattorneys,www.NELF.org
Others
ContacttheEldercareLocator,afreeserviceprovidedbytheU.S.AdministrationonAging,1-800-677-1116
TofindaProfessionalGeriatricCareManager,contactwww.caremanager.org or www.midwestgcm.org or call 520-325-7925
Non-Profit Resources
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Formoreinformationorassistance,pleasefeelfreetocontactus:
Jim Schuster, J.D., Certified Elder Law Attorney24330 LahserSouthfield, MI 48034(248) 356-3500E-mail:[email protected]
DianeHischke,R.N.,M.S.N.,C.M.C.ProfessionalGeriatricCareManagerFounder and President, Serving Seniors, Inc.330 East Street, Suite 1Rochester, MI 48307(248) 375-9125E-mail:[email protected]
Bruce Sack, M.D.Board Certified Adult and Geriatric PsychiatristComprehensivePsychiatricServices28800 Orchard Lake, Suite 250FarmingtonHills,MI48334(248) 932-2500
Sandra L. Lyness, Ph.D.Licensed Psychologist, Marriage Counselor4252 Stoneleigh Rd.BloomfieldHills,MI48302248-645-0299E-mail:[email protected]
Kelley Watson Fulkerson, MPAAlzheimer’sAssociationGreaterMichiganChapter20300 Civic Center Drive, Suite 100Southfield, MI 48076(248) 351-0280E-mail:[email protected]
DorothyMcMahon,LUTCF,CSA,CLTC,LTCPLong-TermCareInsuranceSpecialistMcMahon and Associates, Ltd.P.O. Box 806BloomfieldHills,MI48303-0806248-844-9787E-mail:[email protected]
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