Caregiving with Advanced Illness

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)。

預先制定醫療護理指示及 POLST (Advanced Health Care Directives and POLST - Chinese)

預先制定醫療護理指示及POLST

「預先制定醫療護理指示」(AHCD) 是指您指定某人(醫療護理代理人、授權代理人、委託人或代理人)在您不能表達自己意願時為您做決定,也稱為「醫療護理永久授權書」、「自然死亡法案」、「醫生指示」或「生前遺囑」。(生前遺囑在不同地方有稍為不同的定義,請查看您所在州承認的定義。)所有州都承認AHCD,但各州法律不同,因此各有不同的表格。

預先制定醫療護理指示

它有何作用

  • 在您不能表達自己意願時,您指定的人擁有合法權力,可以為您做出醫療護理決定
  • 您可以針對不能表達自己意願的所有情況,制定具體的未來醫療護理書面指示
  • 只要您能做決定,則您自己負責醫療護理決定,除非您另有其他表明
  • 根據法律規定,醫生和您的代理人有義務遵循您的醫療護理指示

您的代理人有權

Directivas anticipadas de atención médica y POLST (Advanced Health Care Directives and POLST)

La Advanced Health Care Directive (AHCD, Directiva anticipada de atención médica) le permite designar a una persona (agente de atención médica, apoderado, representante o sustituto) para que tome una decisión por usted en caso de que usted no pueda hablar por sí mismo. También se denomina “Poder notarial perdurable para la atención médica”, “Ley de muerte natural”, “Directiva para médicos” o “Testamento vital”. (El testamento vital es ligeramente diferente; consulte qué se reconoce en su estado).

A once virile, passionate Italian was now void of all emotion

My name is Lisa. I’m a baby boomer and so was my childhood sweetheart. We met at 15, and dated until we were married in 1966, just turning 20 years old. We were born in August, and chose that month to marry as well. A lot of celebrating for two Leos.

Our life began rather simply. Living and working in San Francisco, but wanting to start a family, we decided to buy a home in the burbs.

Legal Planning for Incapacity

As you face aging and the need to make plans for your future, you face having to make legal decisions about many aspects of your lives. These legal decisions not only protect you from others doing things you might not like to you, they also protect family and loved ones by giving them guidance in the care that you would like to receive. After completing all the legal paperwork, the next step is to sit down and talk to family about the decisions you have made and why.

Making Decisions: What Are Your Important Papers?

As you face aging and the need to make plans for your future, you face having to make decisions about many aspects of your lives.  These legal and health care decisions not only protect you from others making decisions for your care that you do not want, they also protect family and loved ones by giving them guidance in the care that you would like to receive.  After completing all the legal paperwork, the next step is to sit down and talk to family about the decisions you have made and why.

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