Caregiving with Advanced Illness

Medios para una comunicación eficaz para proveedores de atención médica y cuidadores

Cuando un ser querido necesita atención médica, tradicionalmente recurrimos a profesionales para despejar dudas, obtener un diagnóstico certero y opciones de tratamiento. En el pasado, los médicos eran la autoridad indiscutible que llevaba la voz cantante en las discusiones con sus pacientes sobre atención médica. Pero las cosas han cambiado, y la relación con el médico también.

Pathways to Effective Communication For Healthcare Providers and Caregivers

Any time our loved ones need medical care we traditionally rely on professionals to answer our questions, diagnose properly, and recommend treatments. In the past, doctors were unquestioned authorities who took the lead in discussions with their patients on medical care. But things have changed; the relationship has shifted.

Trastorno neurocognitivo asociado con el VIH (HIV-associated Neurocognitive Disorder — HAND)

Desde el comienzo de la epidemia del SIDA, más de tres décadas atrás, doctores, cuidadores familiares y amigos, y los propios pacientes han observado que algunas personas afectadas por la enfermedad experimentaban un deterioro de la función cerebral y de la capacidad de movimiento así como también cambios en el comportamiento y el estado de ánimo. Este trastorno recibió el nombre de trastorno neurocognitivo asociado al VIH (HIV‑associated Neurocognitive Disorder - HAND, por sus siglas en inglés).

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HIV-associated Neurocognitive Disorder (HAND)

Since the start of the AIDS epidemic more than three decades ago, doctors, family and friend caregivers, and patients have observed that some people with the disease experience decline in brain function and movement skills as well as shifts in behavior and mood. This disorder is called HIV-associated Neurocognitive Disorder, or “HAND.” Although advances in antiretroviral therapy from the past two decades have decreased the severity of HAND, symptoms still persist in 30–50% of people living with HIV. For many people, these symptoms continue to affect activities of daily living.

Now it is My Turn to Be There for Him

My name is Julie Pacheco, I'm 47 years old and I take care of my step father Jack who is 90 years old. He suffers from dementia.

When I was 26 my mother married this man and he became a part of our crazy, dysfunctional family. By dysfunctional  I mean mainly myself, who at that time, was a single mother sufferring from the disease of addiction.

When Care Comes Home . . . L.A. Caregivers Invited

FCA is alerting caregivers in Los Angeles, California, to an event hosted by one of our corporate partners, Clorox.  Caregivers in the Los Angeles area are invited to join Clorox CareConcepts for a night off with other caregivers . . . cocktails, hors d'ouevres, and pampering activities will be provided,along with a private screening of the caregiving documentary "A Sacred Journey," by Los Angeles-based filmmaker, Ernesto Quintero.

We Had Promised Each Other We Would Never Leave One Another

For 3 years, it was forgetting just little things. He never thought anything about it as his job was very stressful. He had a mandatory work meeting down state which he went to. But he called me on the phone saying that he was lost, and that’s when I knew there was something wrong.

I found him on the side of the road; I had told him to park and stay in his car. We went home and he seemed fine for a while.

The Trouble with Hope

I had a strained relationship with hope before my wife was diagnosed with cancer.  To me, hope was a high waiting for a low, a fix with a nasty flipside.  Far from the precious entity exalted by legions of poets and philosophers, hope was just another coordinate on the pain/pleasure cycle existing in infinite balance with its opposite.  In the same way that happiness alternates with sadness, or desire with loss, hope alternates with fear. One requires that the other exist. Hope was for suckers, and I was no sucker.

簡介 (Grief & Loss - Chinese)

簡介

人們一般認為悲傷是對死亡的一種反應。但還有另一種悲傷,就是在照顧患有慢性疾病的家人因失去而感到的悲傷。慢性疾病,尤其是損害病人認知能力的疾病,會讓護理者和病人感到悲傷和失去感。在本資訊說明中,我們將討論與死亡和臨終有關的悲傷,以及與慢性疾病有關的悲傷。在所愛之人去世前、去世時和去世後感到悲傷是很自然的。悲傷是一個接受無法接受之事的過程。

慢性疾病和失去感

隨著時間的過去,大多數慢性疾病患者的能力會退化。有的帕金遜症患者不能自行扣上襯衫鈕扣,有的糖尿病患者必須遵循特殊飲食規定,有的腦退化症患者不記得身邊的人,護理者必須適應病人的需要。護理者可能會經歷失去各種各樣的東西:失去獨立性、失去控制、失去想像中的未來;失去經濟保障和以往的關係,失去自由、睡眠和家庭和諧;失去分擔家務和其他工作的人,或者失去能商量事情的人。慢性疾病患者也必須適應失去許多相同的東西,還有失去尊嚴、活動能力、精心規劃的未來或退休,失去曾經擔當的角色,或者失去存在價值(這些全部取決於疾病會導致患者喪失哪些能力)。

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