Primary Caregivers

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.

ACTION ALERT: Family Caregivers, We Need Your Help!

Join us in urging state legislators to restore funding for the California Caregiver Resource Centers (CRCs), which were aggressively cut by $7.6 million, 74%, in 2009 – one of the largest cuts of any health and human services program! The total CRC allocation has gone from $10.5 million to the current funding level of $2.9 million to serve 6 million California family caregivers!

Event Invitation: The Diverse World of Family Caregiving

The IOM Committee on Family Caregiving for Older Adults invites you to a public workshop on the diversity of family caregiving issues. The event will be held Friday morning, April 17 at the Arnold and Mabel Beckman Center of the National Academies in Irvine, CA. 

 

‘Hello, I must be going . . .’

“Hello, I must be going . . . ” read the note addressed to me and taped to the door of Allan Reiff's office in the Philosophy/Humanities Department at our local community college. The year was 1983, and little did I know then, the dark truth hidden in those seemingly light-hearted words; the man I would eventually marry would be taken from me all too soon by the ravages of Alzheimer’s disease.

Transferring Mom was New, But Restlessness and Inactivity Kindled her Agitation

Our family equation for caregiving developed slowly, over five rigorous years following our father's death. Two sisters and I divide the year into three, with each caregiving our 85 year-old mother four months. Mom spends summer on Kauai. 

My first summer with Mom was clumsy. Not clumsy like, "Oops, I tripped over a crack . . ." clumsy like a caffeinated circus performer juggling 14 greased kittens─ridiculous, slightly hazardous, and horrifying to observers.

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.

Emotional Side of Caregiving

Whether you become a caregiver gradually or all of sudden due to a crisis, or whether you are a caregiver willingly or by default, many emotions surface when you take on the job of caregiving. Some of these feelings happen right away and some don’t surface until you have been caregiving for awhile. Whatever your situation, it is important to remember that you, too, are important. All of your emotions, good and bad, about caregiving are not only allowed, but valid and important.

Help us Meet a Holiday Challenge Grant!

Family Caregiver Alliance has received a challenge grant of $12,000 to match with contributions from our supporters by the end of the year.

Connections October 2014

 

Connections September 2014

 

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