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

- 21 -

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

- 22 -

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

*

*

*

*

- 23 -

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

- 24 -

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

- 26 -

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?

The Legal Path

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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

The Legal Path

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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.

Intelligent Care

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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.


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.


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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.


All

behavior

has

meaning

Become a

passionate

detective

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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

- 58 -

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!


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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.


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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.


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.


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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.


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

- 66 -

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

- 67 -

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”

- 68 -

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


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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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


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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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Alzheimer’s Answer Book€¦ · Caregiver’s Guide Diane Hischke, R.N., M.S.N., C.M.C. •...

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