cjd

Personal Stories

Read the stories of other CJD caregivers whose strength, spirit and courage helped them communicate with friends and family. Maybe someone has followed a similar path or found the humor or positive moment you need right now.

Christy

It all started in January of 1997.

My dad started feeling dizzy and was not sure what was going on. He was and had always been very healthy all his life. He worked at the Post Office and was still employed with them the day he passed. He had been there 35 years and never missed a day of work. NEVER.

Get Involved

Because Creutzfeldt-Jakob disease is a rare disease, many people have never heard of it. Educate others about what it is to be a caregiver and the need to find a cure for CJD.

Become a Participant

Treatments and cures for diseases are developed through research and clinical trials. If you want to help advance the work being done, participate in a quality treatment trial.

Become an Advocate

Find Support

A support group can provide a safe place to express your own needs and deal with painful emotions, including aggression, anger, mourning and guilt. It is a relief to know you’re not alone. One of the most valuable benefits of being in a support group is learning about coping skills and helpful resources from your peers. Every person's experience is so different, yet there are similarities that often only other caregivers can relate to. Many caregivers find new friends and social contacts in support groups.

Why a Support Group?

Preparing for the End

End-of-life plans can be scary to think about, but the speed of changes with rapidly progressive dementias make it essential to start planning as early as possible.

Legal, financial and health-related planning is important for all individuals, regardless of our health status. These documents define how you want to be medically cared for in case you are not able to speak for yourself. People often assume that their loved ones know their wishes about medical care but have never actually discussed it.

Participating in Research

Choosing to participate in research is an important personal decision, and we hope this section will help you better understand the research process. UCSF's Memory and Aging Center (MAC) is one of the few places in the world that conducts research and clinical trials of CJD. The CJD research at the MAC focuses on understanding prion disease, diagnosing it earlier and more accurately, and developing treatments for CJD.

What is clinical research?

Clinical research is generally considered to be a health-related investigation in human beings that follows a pre-defined plan. The UCSF Memory and Aging Center conducts both observational and interventional types of clinical research.

Hospice Care for CJD Patients

Hospice care provides palliative care to relieve suffering and improve the quality of life for people who are expected to live for about six months or less. People with CJD can often get into hospice earlier due to the rapid disease course. Like palliative care, hospice care can be provided whether you are at home or in an assisted living facility, nursing facility or hospital.

What is hospice care?

Hospice care provides palliative care to relieve suffering and improve the quality of life for people who are suspected to live for less than six months. People with CJD often qualify for hospice due to the rapid disease course. Like palliative care, hospice care can be provided at home, an assisted living facility, a nursing facility or a hospital.

Choosing a hospice care provider

Palliative Care for CJD Patients

The goal of palliative care is to relieve the pain, symptoms and stress of serious illness. Palliative care may be provided at any time during a person's illness, even from the time of diagnosis. You can get palliative care whether you are at home or in an assisted living facility, nursing facility or hospital.

What is palliative care?

Palliative care is medical care that concentrates on reducing the severity of disease symptoms without prolonging suffering. The goal is to prevent and relieve discomfort and to improve quality of life for people facing a fatal illness. Palliative care usually employs a team approach and may be provided at any time during a person's illness, even from the time of diagnosis. It may be given simultaneously with other treatments that attempt to treat the underlying disease.

Choosing a palliative care provider

Home Care for CJD Patients

If the goal is to reduce your workload, think about hiring help for cleaning the house, running errands or preparing meals. More skilled helpers might be required to help with bathing, dressing or toileting. And finally, registered nurses are available if you need skilled medical care.

What is Home Care?

Working with Your Family

Family dynamics can change with a serious illness. Being informed and prepared for different reactions will help you avoid destructive cycles.

Dealing with Family Conflict

Caring for the Caregiver

One of the biggest challenges for caregivers is finding the time and energy to take care of your own health. Taking care of yourself will allow you to provide better care for your loved one.

Take strength in identifying yourself as the caregiver. You are making the best decisions you can for you and your loved one. Trust your instincts. Learn what you are good at and what you don’t do so well. This will help you decide when to say “no” and when to ask for help. Take pride in what you do well.

Caregivers often experience frustration, depression, and stress. These emotions can hinder your ability to provide good care and eventually harm your own health. Therefore, commit to taking care of yourself in order to take better care of your loved one.

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