Friday, March 23, 2007

Alzheimer's - Caregiving To Parents, Would You, Could You, Should You

Are you cut out for caregiving? Is Alzheimer's disease within your midst, prodding thoughts on how best to soothe your degenerating parent? Whether the latter resides with you, or at assisted-living or nursing residences, both of you require sustenance.

Having been her full-time caregiver, I am grateful that my Alzheimer's-affected mother, Mary, bestowed upon me that privilege. Over the past decade, I concentrated on fulfilling her palliative needs. When she died a few months ago, I was overwhelmed by mingled sorrow and awe. The realization kept striking me, how often her unconditional love for me had poured through her, despite her eroded brain. I would never have been graced with potent, surfacing expressions of my mother's devotion, had I not chosen the role of dominant guardianship.

Is an inchoate call nudging you, to minister to your elder's suffering, within close proximity to pain, on a round-the-clock basis? Knowledge is key.

(A) Self-Query Per Four Considerations:

Alzheimer's is the most common type of dementia. The length and intensity of the affliction, and the individual's behavior patterns vary. Insurance eligibility barriers and insufficient income exacerbate an already worrisome situation. It's reported that close to $175,000 (and it's escalating) in subsistence costs will be expended during an Alzheimer's patient's lifetime. Currently, since 2002, the number of cases has crested to five million from four million. More families feel submerged by conflicted goals. Let's contemplate if an at-home program seems feasible for you as primary attendant.

First, Your Sense of Purpose: Does the thought of home care evoke a feeling of vocation -- or of obligation? Is your relationship with your parent such, that old inner wounds have healed, and will not jeopardize pragmatic chores? Will you respond with patience, fortitude, compassion? Is your genuine motive, guilt or filial love? Will other immediate kin feel displaced, by the necessary ferocity of focus you will direct towards the invalid?

Your Aptitude For Tending: Would you stay motivated, during periods -- and there will be -- when siblings, relatives, friends, cannot or will not proffer support? Do you think you could operate devices such as those testing blood sugar? Are you too squeamish to handle injections, bathing, dressing, feeding the shut-in? You love your parent, but do you like her or him -- like enough, to alleviate the heavy boredom that threatens to plunge the bed-ridden one into despair? Would you read the newspaper to your father, despite the fact you've only had two hours sleep, after allaying his fears all night? Would you amuse your mother with silly jokes, while secretly dispirited, having just deciphered the latest lab reports on her impairment? Would you remind yourself during a crisis, when your ward rebuffs, even insults you, that it is the sickness babbling, not your revered parent? Do you emanate balance, trusting when to insist on rules, and when to deviate? Is there adequate discipline in you to organize doctor appointments, and adhere to fixed intervals for administering medications? Would you be capable of dealing at times, with an ungovernable mind, yours as well as the dependent's?

Your Resilience: Do you experience claustrophobia, whereby being detained bedside, for hours on end, would affect you adversely? Have you the stamina to push a wheelchair through a mall? Do you possess the physical vigor to lift your parent from chair to bed to chair to bed, ad infinitum, during the day? Do you have creative inner resources, that will help you muster fun and laughter for the both of you? For example, I refused to view my mother as a victim; she was hampered by Alzheimer's but not solely defined by it. Humor and lightheartedness, her essence, would always be a part of her life, I had vowed.

Your Learning Capacities: Does a daily routine, a highly structured life, bore or benefit you? Would you consider yourself informed, avid for geriatric study, so that you may confer confidently with specialists, per their diagnoses and recommendations?

Also, could you separate your loved one from the realm of statistics? Would you uncover the degree to which this unique individual emits what I term an "R and T" factor -- being Reachable and Teachable? To my delight, my mother diligently recited her name, Mary, and recalled it ever after. Would you instruct a resilient, and willing parent? My mother had been an independent person. Confirming my instincts, she welcomed avenues, however minor, in which I could relinquish control to her. I would cut her food, then produce a serving spoon, with which she could scoop the morsels and steer them to her mouth. When radically enfeebled her last few weeks, confined to the armchair she favored over hospital-type beds, she let me curl her fingers around the utensil. Subtly I guided her hand, so that she felt she was feeding herself. It will startle you, witnessing a muted personality heralding itself against immense odds on rare occasions.

Your Modified Relationship: Could you bear living with someone you know, who doesn't know you? Will you accept your unsettling new identity, as a stranger who now must earn affection, formerly an offspring's entitlement? Will you risk interactions, with someone you love who will decide whether or not to love you back? Can you remain centered, even contented, in the present moment, where the dear one resides?

Thus, are you suited for caregiving? If so, and your desire to protect matches, if known, your parent's wishes, and your revenue sources accommodate the decision, you and your charge are truly blessed.

If circumstances dictate otherwise, such a boon is not exclusive to at-home environs. You may transfer home care skills to professional facilities. Your purposefulness in showering empathy, in your responsiveness to details others overlook, will matter indeed (visiting frequently, unwrapping treasures such as baby-soft blankets; re-adjusting the slant of mattress when you surmise your parent's discomfort; re-filling the water cup, quenching thirst before asked; scrutinizing the attentiveness of staff, or just sitting quietly, stroking his/her brow). Your fidelity immeasurably elevates the quality of living for an otherwise isolated, inactive, often speech-impaired frail being.

The proposals below may still be germane to your case, in feeding, guarding, and stabilizing conditions for your parent, during each of your encounters. Moreover, they reinforce the significance of self-care. Even if you dwell a sizeable distance from failing relatives, their fluctuating viability most likely weighs palpably on your mind, and you deserve to feel uplifted.

(B) Preparation:

Peruse magazines, books, and websites on the topic of caregiving. Seek out support groups, to heed the dilemmas and irony of parenting your own parent. If possible, enroll in a class on CPR techniques. Discuss with doctors, the merits of depression-screening to avoid confusion with dementia. Analyze visiting-nurse ramifications. If caregiving is not an option, appraise the value of Alzheimer's-geared assisted-living over nursing homes; go online and Google "Alzheimer's placement referral services" if need be.

Access intelligible articles from websites such as;; and Learn about an intriguing discovery, SORL 1, a potential gene factor that may trigger Alzheimer's. Discern activities appropriate for early stages, such as walking, or crossword puzzle-solving.

Investigate free transportation and other services, that governmental agencies implement. A few social, groups sponsor a one-day small "scholarship," meaning a paid, carefree caregiver's holiday spent any way envisioned -- buying a book, viewing a movie, dining in a café, whatever respite is most life-affirming for you.

Also, consult with close relatives and friends. Allow them to vent objections, and to reveal how they would like to contribute. The more everyone fathoms Alzheimer's disordered progression, and what to expect from each other, the more harmonious, the outcome.

(C) Appreciate Unforeseen Marvels:

Throughout your service to your parent, recognize the intangible jewels embedded in the experience. Yes, Alzheimer's brings beauty as well as burden.

Because you are supervising 24/7, you may witness wondrous occurrences unavailable to those who sporadically visit. Alzheimer's drowns memory. In my mother's case, I perceived that the insidious amnesia was not constant; forgetfulness flowed in waves. There were moments of billowing joy for us, when she suddenly would turn lucid, pat my cheek, utter my name, and hug me. Many days, weeks, months might ebb, before cognition upsurged again. Yet those idyllic moments of re-connection, sustained me.

(D) Accept Ends, And Beginnings:

As the disease advances, symptoms change, and no two illnesses mirror each other. The weakening effects of Alzheimer's may creep along or erupt in stunning form. A few weeks before my mother departed, her legs gave way with no forewarning. I am thankful that until then, she could enjoy shuffling to the wheelchair, with my aid. Before her last 24 months of tribulation, she displayed enough agility to stroll with me for morning "constitutionals" year after year.

At the preliminary levels of Alzheimer's, not just my mother but many others who remain mobile may tumble into terrifying phases of running away, or hiding. Only uninterrupted monitoring of their whereabouts will anchor them to safe surroundings. A childlike urge to pry goads them. If still strong, they might straddle the banister; climb out windows; toss a bowl at the t.v. screen to capture the attention of the people "trapped inside." They may become caught in the act of tasting inedible curiosities, such as a packet of dishwasher gel my mother chewed, which garnered her a swift visit to the hospital. You may have to re-think household design and customs. Clearing lower cabinets, fastening safety locks atop bathroom doors, inserting sturdy gates at stairways. At dinner, no chicken bones, no heavy glassware. How would you protect a toddler? Develop the same mind-set.

In the acute stages, a chronic pain inexplicably might vanish. Sometimes, your loved one may appear to rally, only to relapse, then re-group again. To avert a traumatic jolting from a false sense of hope, don't lose sight of the uninvited but inevitable big picture. Unless a new cure abruptly materializes, a medicine or miracle intervenes, overall direction for the invalid is downward. Whether you're religious or not, the well-known prayer, Grant me the serenity to accept what I cannot change, the courage to change what I can, and the wisdom to know the difference, proves consoling for many caregivers. I know it was and is for me. When the moment of parting arises, an awareness fortifies you, that you had provided, not just an efficient home-based hospice, but a haven, for your loved one.

In the days before her passing, for precious intervals, my mother would grip my wrist, while laboring to formulate the word "love." Our relationship had swirled full circle, with her maternal impulses roused, intent on emboldening me for whatever the future unveiled. Whether at the end she was asserting our biological ties or anointing me her "honorary" daughter, our link proves insoluble.

If you have spiritual inclinations, I encourage you to hold a constructive, even Bigger Picture in mind -- if you trust, as I do, in divine love, a tremendous reassurance will envelop you, With gratitude, we may sense that those whose passing we will mourn, shall explore a greater unseen eternal reality, savoring a vast capacity to be present to us, and cherish us. May you and your loved one resonate with peace.

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