email page print pageAll Topic Reviews
"Are You There Alone?""How Come Boys Get to Keep Their Noses?""My Madness Saved Me"10% Happier365 Days49 Up56 UpA Beautiful MindA Beautiful MindA Beautiful MindA Book of ReasonsA Can of MadnessA Child's Life and Other StoriesA Dangerous LiaisonA Fight to BeA First-Rate MadnessA Good Enough DaughterA Heartbreaking Work of Staggering GeniusA Lethal InheritanceA Lethal InheritanceA Life ShakenA Life Worth LivingA Little PregnantA Message from JakieA Million Little PiecesA Numerate LifeA Pocket History of Sex in the Twentieth CenturyA Slant of SunA Special EducationA Tribe ApartAbout FaceAddicted Like MeADHD & MeAEIOUAgainst Medical AdviceAgents in My BrainAileen - Life and Death of a Serial KillerAlgernon, Charlie and IAll Out!All Seasons PassAlphavilleAlways Too Much And Never EnoughAlzheimer'sAn Anthropologist on MarsAn EducationAn Unquiet MindAngela's AshesAngelheadAnna Freud: A BiographyAnnie's GhostsAnother Bullshit Night in Suck CityAnthology of a Crazy LadyApples and OrangesApproaching NeverlandAre You There, Vodka? It's Me, ChelseaAs I Live and BreatheAs Nature Made HimAt Home in the Heart of AppalachiaAt the End of WordsAvalancheBad BoyBad GirlBeautiful BoyBeautiful WreckBecoming AnnaBen Behind His VoicesBequest and BetrayalBereftBertrand RussellBlackoutBlanketsBloodlettingBodies in Motion and at RestBoneBorn on a Blue DayBoyBoy AloneBoyleBrain on FireBreaking ApartBreaking the SilenceBrokenBulimics on BulimiaBuzzCamus and SartreCharles DarwinChasing the HighCheeverCherryCity of OneCluesClumsyComfortComplications Compulsive ActsConfessions of a Cereal EaterConfessions of a Former ChildConfessions of a Grieving ChristianConfessions of the Other MotherConfidingConquering the Beast WithinContesting ChildhoodCrackedCrazyCry Depression, Celebrate RecoveryDamned to EternityDancing at the Shame PromDante's CureDaughter of the Queen of ShebaDavid Sedaris Live at Carnegie HallDays With My FatherDefeating the VoicesDementia Caregivers Share Their StoriesDepression and NarrativeDescartesDetourDevil in the DetailsDiagnosis: SchizophreniaDirty DetailsDirty SecretDivided MindsDivine MadnessDon't Get Too ComfortableDown Came the RainDress Your Family in Corduroy and DenimDrinkingDriving My FatherDrunkardDryEarly Embraces IIIEinsteinEinstein and OppenheimerElectroboyElegy for IrisElijah's CupElliott Smith and the Big NothingElsewhereEnough About YouEpilepticEvery Girl Tells a StoryEverything In Its PlaceExamined LivesExiting NirvanaFaces of Huntington'sFamily BoundFast GirlFearless ConfessionsFind MeFinding Iris ChangFirst Person Accounts of Mental Illness and RecoveryFirst Person PluralFixing My GazeFlanneryFolie a DeuxFor the Love of ItFortress of My YouthFrank Ramsey (1903-1930)Franz KafkaFraudFree RefillsFreudFreudFreudFriedrich NietzscheFrom Joy Division to New OrderFumblingFun HomeFuriously HappyGalileo Get Me Out of HereGirl in Need of a TourniquetGirl Walking BackwardsGirl, InterruptedGirl, InterruptedGirls on the VergeGoing BlindGoing Through Hell Without Help From AboveGraysonGrowing Up JungGuttedHalf a Brain Is EnoughHardcore from the HeartHead CasesHeal & ForgiveHeal & Forgive IIHeavier than HeavenHeinz KohutHeinz KohutHello from Heaven!Hello to All ThatHer HusbandHer Last DeathHigh PriceHole in My LifeHolidays On IceHolidays on IceHope's BoyHouse of Happy EndingsHouse of Happy EndingsHow I Stayed Alive When My Brain Was Trying to Kill MeHow to Lose Friends & Alienate PeopleHow to Make Love Like a Porn Starhow to stop timeHumeHunger Makes Me a Modern GirlHurry Down SunshineI Feel Bad About My NeckI Never Promised You a Rose GardenI Remain in DarknessI'd Rather Eat ChocolateI'd Rather LaughIf I Die Before I WakeImagining RobertIn Search of FatimaIn the Realms of the UnrealIn the Wake of SuicideInside TherapyInternInvisible No MoreIt Happened to NancyIt Takes a Worried ManJack Cole and Plastic ManJean-Paul SartreJohn Stuart MillJourneys with the Black DogJust CheckingKafkaKantLa SierraLab GirlLast Flight OutLearning to FallLet Me Make It GoodLife As We Know ItLife InterruptedLife ReimaginedLimboLincoln's MelancholyListening in the Silence, Seeing in the DarkLittle PeopleLive For Your Listening PleasureLive Through ThisLiving in the Shadow of the Freud FamilyLiving With SchizophreniaLiving with SchizophreniaLockeLonelyLong ShotLook Me in the EyeLooking for The StrangerLoose GirlLosing Mum and PupLosing My MindLove Is a Mix TapeLove SickLove Times ThreeLove Works Like ThisLove You, Mean ItLuckyLudwig WittgensteinLyingMad HouseMad PrideMadame ProustMadnessMagical ThinkingMalignant SadnessManicMarcel ProustMarcus AureliusMary BarnesMaverick MindMe Talk Pretty One DayMeaningMelanie KleinMemoirMemoirs of an Addicted BrainMemoirs of My Nervous IllnessMen-ipulationMisconceptionsMiss American PieMockingbird YearsMomma and the Meaning of LifeMommies Who DrinkMonkey MindMore, Now, AgainMortificationMy Age of AnxietyMy Body PoliticMy Brain Tumour AdventuresMy DepressionMy Father's HeartMy First Cousin Once RemovedMy Flesh and BloodMy Horizontal LifeMy Life Among the Serial KillersMy Sister LifeMy Stroke of InsightName All the AnimalsNeural MisfireNietzscheNietzsche: The Man and His PhilosophyNinety DaysNo Hurry to Get HomeNo Impact ManNo More ShavesNo One Cares About Crazy PeopleNolaNotebooks 1951-1959NothingOdd Girl Speaks OutOedipus WreckedOf Spirits & MadnessOn Being RapedOn the Edge of DarknessOn the MoveOne Hour in ParisOne Hundred DaysOphelia SpeaksPagan TimePassing for NormalPeople Who Eat DarknessPerfect ChaosPerfect ExamplePermanent Present TensePersepolisPlanet of the BlindPlaying with FirePlease Don't Kill the FreshmanPoisoned LovePollockPOPismPortraits of Huntington'sPoster ChildProzac DiaryPsychiatrist on the RoadPsychosis in the FamilyPuppy Chow Is Better Than ProzacQuitting the Nairobi TrioRaising BlazeReasons to Stay AliveRebuiltRecovered, Not CuredRelative StrangerRescuing JeffreyRestricted AccessRevengeRewind, Replay, RepeatRichard RortyRiding the Bus With My SisterRobert Lowell, Setting the River on FireRoom For JRosemaryRough MagicRunning After AntelopeRunning with ScissorsScattershotSchizophreniaSchopenhauerSecond OpinionsSectionedSeeing EzraSeeing the CrabSet the Boy FreeSex & Single GirlsSex ObjectShakespeareShe Bets Her LifeShe Got Up Off the CouchShut the DoorSickenedSilencing the VoicesSimone de BeauvoirSinging in the FireSkin GameSlackjawSlut!SmashedSome Assembly RequiredSome Kind of GeniusSometimes Amazing Things HappenSometimes Madness Is WisdomSongs from the Black ChairSongs of the Gorilla NationSoren KierkegaardSpeak to MeSpeaking Our Minds: Revised EditionSpecial SiblingsSpentStandbyStick FigureStill LivesStretchSunset StorySurviving OpheliaSwing LowTales from Both Sides of the BrainTales of PsychotherapyTalk to HerTell Me Everything You Don't RememberTellingTelling Tales About DementiaThe Accidental BillionairesThe AddictThe Anatomy of HopeThe Anti-Romantic ChildThe Bastard on the Couch CDThe BeastThe Bell JarThe Best Seat in the HouseThe Big FixThe Body SilentThe Boy on the Green BicycleThe Boy Who Loved WindowsThe Buddha & The BorderlineThe Burn JournalsThe Camera My Mother Gave MeThe Cancer Monologue ProjectThe Center Cannot HoldThe Chelsea WhistleThe Churkendoose AnthologyThe Day the Voices StoppedThe Devil WithinThe DisappearanceThe Discomfort ZoneThe Doctor Is InThe Eden ExpressThe Family SilverThe Farm Colonies: Caring for New York City's Mentally Ill In Long Island's State HospitalsThe Fasting GirlThe First Man-Made ManThe First TimeThe Geography of BlissThe Glass CastleThe Good DoctorsThe Hillside Diary and Other WritingsThe Incantations of Daniel JohnstonThe Last AsylumThe Last Good FreudianThe Last Time I Wore a DressThe Liars' ClubThe Lives and Loves of Daisy and Violet HiltonThe Lives They Left BehindThe LobotomistThe Long GoodbyeThe Looked After Kid: Memoirs from a Children's HomeThe Loony-Bin TripThe Madness of Our LivesThe Making of a PhilosopherThe Making of Friedrich NietzscheThe Man Who Couldn't EatThe Man Who Shocked the WorldThe Man Who Tasted ShapesThe Marvelous Hairy GirlsThe Maximum Security Book ClubThe Me in the MirrorThe Memory PalaceThe Mercy PapersThe Mistress's DaughterThe Naked Bird WatcherThe Naked Lady Who Stood on Her HeadThe Night of the GunThe Noonday DemonThe Notebook GirlsThe NursesThe Only Girl in the CarThe Orchid ThiefThe Other HollywoodThe OutsiderThe Philosopher's Autobiography The Philosophical Breakfast ClubThe Philosophical IThe Pits and the PendulumThe Pornographer's GriefThe Private Memoirs and Confessions of a Justified Sinner The Professor and the MadmanThe Psychopath TestThe Quiet RoomThe Red DevilThe Rescue of Belle and SundanceThe Ride TogetherThe Rules of the TunnelThe Secret of LifeThe Shaking Woman or A History of My NervesThe Shared HeartThe Shiniest JewelThe Siren's DanceThe Statistical Life of MeThe Story of My FatherThe Strange Case of Hellish NellThe Summer of a DormouseThe SurrenderThe Talking CureThe Thought that CountsThe Three of UsThe Undoing ProjectThe Vagina MonologuesThe Velveteen FatherThe Winter of Our DisconnectThe Woman Who Walked into the SeaThe Years of Silence are PastThe Yellow HouseThe Yipping TigerThick As ThievesThinThis Close to HappyThomas S. SzaszTiger, TigerTits, Ass, and Real EstateTo Redeem One Person Is to Redeem the WorldTo Walk on EggshellsTransforming MadnessTrue CompassTruth & BeautyTruth Comes in BlowsTuesdays with MorrieTweakTwitch and ShoutUltimate JudgementUndercurrentsUnholy GhostUnlikelyVoices of AlcoholismVoices Of Alzheimer'sVoices of CaregivingVoices of RecoveryVoluntary MadnessWaiting for DaisyWar FareWashing My Life AwayWastedWaveWe're Not MonstersWeather Reports from the Autism FrontWeekends at BellevueWhat Did I Do Last Night?What Goes UpWhat I Learned in Medical SchoolWhat's Normal?When a Crocodile Eats the SunWhen Breath Becomes AirWhen Do I Get My Shoelaces Back?.....When It Gets DarkWhen the Piano StopsWhen You Are Engulfed in FlamesWhere Did It All Go Right?Where is the Mango Princess?Where the Roots Reach for WaterWhile the City SleptWhile They SleptWho Was Jacques Derrida?Why I Left, Why I StayedWhy I'm Like ThisWildWill's ChoiceWinnicottWinnieWish I Could Be ThereWith Their EyesWomen Living with Self-InjuryWomen, Body, IllnessWrestling with the AngelYou Must Be DreamingYour Voice in My HeadZeldaZor
Dementia is a growing problem in the western world as the population ages and more people suffer from degenerative diseases like Alzheimer's or have many mini-strokes. In the UK, as in many other countries, there has been historical neglect of the problem of dementia by the health services and in a country with a national health system, dementia patients still need to pay for their own care when they are no longer able to live independently. Yet there is increasing awareness of the problem of dementia in both the health services and the general public, so this is a good time for Telling Tales about Dementia.
Lucy Whitman has collected 30 people's reflections on having a close friend or relative with dementia and their experience of looking after them and advocating for them with medical professionals. There are two main sections, "Living with Loss," and "Dispatches from the Battlefield." There's a third short section with just 3 contributions, titled "Keeping in Touch, Letting Go." Then there some introductory sections and appendices, with some useful information. Sometimes the writing in the descriptions of caring is by those who did the caring, and in some cases it is a transcription of what they said in discussion with Whitman. One piece is in the form of a poem. The tales are from people from a variety of backgrounds, with several by same-sex partners or close friends of the patients. Many of the tales are accompanied by photographs of the people with dementia, sometimes with their caregivers, and this helps us to see them as whole people, because you can't see the dementia in the pictures.
The chapters together show how difficult it is to care for a person with dementia, and often how difficult it is to have dementia. There are several reasons for this. First, there is the emotional cost of people fading from view, and only being their recognizable selves a few times a day. As they decline in ability, they require more and more help, and they may not cooperate with getting that help. The old character may be visible only a few times a day, and it can be emotionally hard dealing with a person one hardly recognizes any more. Then there are the many difficulties in dealing with the professional health providers who, even when they are trying hard to be helpful, often do not succeed. In some cases, respecting the patient's rights leads to much worse health care because it leads to patients who are not competent being able to refuse treatment. In other cases, discrimination that is common in society against some groups such as gay and lesbian people may be duplicated in health care settings.
There is a wealth of experience recorded here, and different readers will take away different lessons. One common theme is the search for people to look after person with dementia on a daily basis if they stay at home. For example, both Maria Jastrzebska's parents were from Poland, and so when they got dementia the family brought in Polish carers to live in. She repeats the remark of a friend who said that "if all the Poles in Britain were to leave, the care system would collapse and social services would not be able to cope with the ensuing demands" (29). Some spouses or children end up doing most of the daily care themselves, while others decide that they are simply emotionally and physically unable to face the prospect of such work.
Another theme is the emotional drain of caring for people with dementia. As they lose their memories, it becomes more difficult to motivate oneself to devote energy to doing more than what is necessary, and it is difficult for some to stop being impatient when answering the same question for the hundredth time or responding to fears that have no basis in reality. When dementia gets so severe that the patient no longer recognizes family members, they start to wonder what the point is of visiting. Memory is essential to our identity and our ongoing projects, and without memory, much interaction becomes pointless. Yet in many of the tales in this book, carers talk about seeing occasional flashes of memory or sanity where they recognize the person they used to know. Others talk about the importance of the present moment -- even if it will make no difference for the future, it can be enough to provide company and love to their loved one at particular time.
Related to this is the issue of uncertainty. We don't know how quickly the demented person will slip into total amnesia, or what other medical problems will befall them. But more confusing than that is the variability of the decline. Dementia does not affect all memories and skills uniformly, and the decline is not uniformly downhill. People retain some abilities and memories longer than others, and they have good days and bad days. Indeed, they have good minutes and bad minutes in the same hour. Oliver Sacks has written about how some patients who have lost most verbal abilities can retain the ability to sing and may be animated by music. The tales in the book also show how important context is for memory, and how when a person with dementia moves to unfamiliar surroundings, they can go into steep decline. This is especially common with hospitalizations. When the demented person goes into such a decline, there's always uncertainty whether it is temporary and will be reversed when they get back to their familiar surroundings, or whether it is permanent.
The book does have some gaps. One main one is to do with the financing of care. There's little attention paid to how much difference money makes, or what forms of financial help are available. The authors don't focus on this in their description of their experience, yet it probably makes a big difference to the quality of life of both the demented person and their families. Those in long term residential care will probably have to use all their savings and sell their property in order to pay for it.
Then there is the issue of what kind of caring help families can get. Most people mention particular forms of help that they got; for example, many say that the Admiral Nurse service is excellent, but they don't explain what it is. Other talk about volunteers and other services, but there's nothing systematic. So the book is much more about the subjective experience of caring than a guide to how to actually do it. There are lists at the end of the book about where in the UK people can get further information.
What I personally take away from Telling Tales about Dementia is how sometimes the health services can be enormously helpful and how in other cases families suffer terrible treatment, with wrong diagnoses, uninformed doctors, and insufficient care options. In some cases the only way that families get what they need is by filing official complaints about the doctors. Although there's no way to tell how representative the experiences of the writers are, if the book is any indication of how it is for most people in the UK, then battling with the health system is frequently necessary. When the resources of family members are stretched thin as it is because they are trying to cope with the dementia of their loved one, it is especially frustrating and draining to at the same time fight against the medical institution in order to get the support the person with dementia needs.
While this book is based on people in the UK, it is likely that families in other countries will have similar experiences. It is often sad and even depressing, but it also has important insights and reflections on events that will be meaningful for many readers.
© 2010 Christian Perring
Christian Perring, Associate Professor of Philosophy, Dowling College, New York.