'IN THIS TOGETHER'


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TSE: the disease group

The History of TSE (Prion Diseases)

Sporadic CJD

Familial CJD

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Diagnosing CJD

Caring for a loved one with CJD

End of Life Issues

Getting tested for the CJD Mutation

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HOSPICE

Whenever I heard the word 'Hospice' I would immediately think of cancer patients.  When I left the hospital to take mom home I knew she was going to need help with her activities of daily living.  Knowing I lived two hours away and not knowing how long mom was going to be with us, I went and visited my friend from high school who was also a nurse.  In speaking with her and asking her if she would help care for mom she mentioned Hospice.  I immediately called Hospice and learned their services are not just for cancer patients but any terminally ill patient is eligible for their services.  

We kept mom at home and between family, friends,  and Hospice workers, we were able to make my mom comfortable and allow her to die peacefully.  Hospice workers became a very important part of our family.  I can not say enough about the care, support, and compassion they provided for mom and for the entire family.  I am going to share with you some information they provided me about their services.  Some of this information may be specific to their organization.  Please check with your local Hospice to obtain information on the services they provide.  

Mission
The mission of Hospice is to provide high quality, dignified, compassionate, end of life care to people with terminal illnesses; to promote the long term emotional, spiritual and physical well being of caregivers and survivors; to provide expertise in palliative, supportive and bereavement care to professionals as well as the community at large. 

What does Hospice provide? 
(This may vary - check with your local Hospice)

  • Registered Nurses

  • Social Work Services

  • Home Health Aides

  • Caregiver Respite

  • Spiritual Care

  • Financial Assistance

  • Medications

  • Medical Supplies

  • Medical Equipment

  • Oxygen

Who is eligible for hospice?
Hospice is here to provide services to those who have a limited life expectancy and are no longer receiving curative treatments.  Hospice is not just for cancer patients and the elderly, but instead is for people of all ages with any terminal diagnosis including but not limited to:

  • Heart disease

  • Lung disease

  • Neuromuscular disease

  • Renal failure

  • Liver diseases

  • Alzheimers disease

  • Cancer

  • Congestive Heart Failure

  • AIDS

  • Birth defects

  • Other end stage diseases 

When is it time to call hospice?
Hospice is appropriate once the goal of medical care has changed from curing the disease to keeping the patient comfortable.  Patients and their families may have spent many months or years concentrating on treatments designed to cure or slow down the disease process, opting for chemotherapy, surgery, radiation, dialysis or other treatments.  Once the patient or doctor decide a cure is no longer likely and treatment is ended, hospice may begin to provide care.  Hospice nurses have extensive expertise in pain and symptom management making the patient able to remain active, enjoying life much longer.  The earlier Hospice is involved the more the quality of life for the patient and family will improve.

Are there services available for the family and caregivers? 
Hospice provides counseling, support and respite services to the family and caregiver.  Bereavement support is also available at no charge after the death.  These services include individual counseling, children's bereavement camp and grief support groups for children, teens and adults.

What is the charge for hospice services?
Hospice accepts insurance reimbursement from Medicare, Medicaid, Blue Cross and others as payment in full.  When there is no insurance the patient receives the same high quality services at no cost.  Hospice never bills a patient or family for services provided.  The generosity of community donations make it possible to provide everything needed to people facing the end of life.

Internet resources: Information about local hospices serving your area may be available from these sites.

 

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