The Caregivers' Foundation

When we hear the words “Cancer”, “Dementia”, “Parkinsons”, “Lou Gehrigs”, we are likely to shiver or feel an unknown yet gripping fear. But if we hear it as a diagnosis for someone we love, our world may shake, tremble and slowly crash. “Don’t worry”, “Relax” are expressions we don’t even want to hear and nor will they have any impact. Many a times, before we’ve even had the time to absorb the nature of these illnesses and the gravity of the diagnosis, we will be pushed into caring for our loved one. Being a caregiver is an emotional journey, and most of us are unprepared for it. It is a journey into the unknown, where the destination is unclear and most probably undesirable.

Our aim is to reach out to current and former caregivers to provide therapeutic and practical support. We are looking to set up a group for caregivers where they can connect with others like them and understand that the nature of their worries and anxieties is not unusual and can be dealt with effectively if they seek help.

The foundation will facilitate a support group for caregivers which will be:

– Educational – guest speakers will address the group during meetings, helping them to understand and cope with their situations. These meetings could be open to other family members who are not part of the group.

–  Therapeutic – facilitated by a psychiatric social worker or a former caregiver, this facet involves allowing members to speak freely about their experiences and feelings without being judged. It will allow participants to share their stories with others who have through or are going through similar experiences.

We are also looking to form a “buddy system” where every member caregiver will have a “buddy” or a friend. This buddy will/may –

– Act as a connection with society, ending the social isolation.

– Check on the caregiver and expect to hear from her/him at regular intervals and will make calls/visits if the caregiver has not been in touch.

– Volunteer to spend a few hours a few hours a week to help the caregiver take some time off and tend to chores outside the house, or just take a walk to feel refreshed.

– Make regular visits to the caregiver’s house and spend time with the entire family – watch a movie, listen to music, take food for everyone, etc. – The aim of this activity is to help the entire family to break free from the “illness” situation.

The boundaries of the “Buddy System” will be decided by the caregiver and her/his family. Buddies will be required to form relationships with the entire family before she/he is required to spend time at home, caring for the patient.

Child Support

This refers to key facilities for the child. This child may or may not be a primary caregiver, but will be supported by the foundation. She/he may be helped via the “buddy system” for things like education and homework. There will be counselling services available if the child should need them. There will be an effort to create an atmosphere of trust in school by helping the child include her/his friends into the problem, ending social isolation at that level.

Profile of Caregivers

– Caregivers to patients suffering from terminal illness or illnesses which have no cure and may end the life of the person afflicted by it. This is usually a short period, and different from slowly progressing diseases like HIV. Mostly includes Cancers and advanced heart diseases.

– Caregivers to patients suffering from progressive illnesses like HIV, Multiple Sclerosis, ALN, Dementia, Parkinson’s, etc.

– Caregivers to patients suffering from mental illnesses – Schizophrenias, OCD, Bi-Polar Depression, etc.

– Caregivers of individuals impaired with developmental disabilities like autism, Down syndrome, mental retardation etc.

– Caregivers to patients who are paralytic owing to a stroke or an accident, where progress is slow or negligible.

It is important to remember that just knowing the facts of a particular disease is not enough.  Your doctor cannot help you to find answers to daily life problems. If you don’t seek help, you’re likely to feel frustrated and cheated. And thereby less capable of being able to help your loved one.