PFF Support Group Leader Network Teleconference. March 13, 2017
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1 PFF Support Group Leader Network Teleconference March 13, 2017
2 Audio Controls If you are calling in, make sure to click telephone under audio controls and please mute your phone while you are not speaking If you are using the mic and speakers on your computer, make sure to click mic & speakers and keep yourself muted under the attendee list:
3 AGENDA Updates from the PFF Providing Support to Caregivers
4 PFF Updates
5 2017 CALENDAR Palliative care teleconference: Listen to the recording Leanne Storch Support Group Fund opens: March 6, 2017 Caregiving & Mental Health Webinar: April 12, 2017 Global Pulmonary Fibrosis Awareness Month: September 2017 First Annual PFF Walk September 9, 2017 PFF Summit 2017: November 9 11, 2017
6 2017 CALENDAR Coming in 2017: SGLN Online Support Group Working Group Kate Gates at if you are interested Roll out of Hoop.la online community for SGLN April 2017 Hope for Grievers Training Date TBD
7 ONLINE SUPPORT GROUP First meeting(s) in May or June 2017 One group for anyone in the PF community who cannot attend an in-person group Possible second group caregivers or people who have lost someone to PF?
8 ONLINE SUPPORT GROUP SGLN Online Support Group Working Group Assist in guiding the development of the PFF s new online support group Approximately three to four teleconferences over the next few months Participate in the first three online support group meetings Assist in getting the word out about the group Receive sponsorship from the PFF to attend the PFF Summit 2017
9 Providing Support to Caregivers
10 ONLINE RESOURCE Family Caregiver Alliance caregiver.org Unless otherwise noted, the information in this presentation was gathered from resources provided by the Family Caregiver Alliance.
11 CAREGIVING OVERVIEW 92% of PF patients who report moderately severe or severe disability receive caregiving Of those who receive caregiving, more than 2/3 receive care every day or multiple days each week Pulmonary Fibrosis Foundation. Findings of a National Survey of Pulmonary Fibrosis Patients. August 6 November 25, 2014.
12 CAREGIVING OVERVIEW More than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves Caregivers experience risks to their own physical, mental, and emotional health Caregivers are uninsured at a higher rate than the general population Family Caregiver Alliance. Caregiver.org. Caregiver Health
13 CAREGIVING OVERVIEW 65 75% of caregivers in the US are women Compared to others in their age group, caregivers take more prescription medications Caregivers are uninsured at a higher rate than the general population About 60% of caregivers exhibit symptoms of clinical depression Family Caregiver Alliance. Caregiver.org.
14 CAREGIVERS EMOTIONAL HEALTH Common feelings Anger Anxiety Boredom Irritability Sadness Fear Frustration Grief Guilt Impatience Jealousy Lack of appreciation Loneliness Loss Resentment Tiredness Ambiguity Depression Family Caregiver Alliance. Caregiver.org. Caregiver Health
15 AMBIGUITY Many caregivers report ambiguity and uncertainty are most difficult aspect to deal with Coping with ambiguity Name the problem Practice both/and thinking Continue but revise family holidays, celebration, & rituals Revise family roles Imagine something new to hope for Family Caregiver Alliance. Caregiver.org.
16 DEPRESSION CONTRIBUTING FACTORS Genetic characteristics Hormone levels Environmental triggers Certain meds Effects of living with major grief History of emotional or physical abuse Living with someone with major depression Family Caregiver Alliance. Caregiver.org.
17 DEPRESSION SYMPTOMS Feeling sad, tearful, empty, hopeless Changes in eating habits weight loss and no appetite or cravings with weight gain Changes in sleep too much sleep or not enough Feeling tired all the time, difficulty being motivated to do anything A loss of interest in people and/or activities that once brought you pleasure Feeling numb Becoming easily agitated or angered Feeling that nothing you do is good enough Increase in alcohol or drug consumption Excessive time on the internet Trouble focusing, thinking, or planning as if your head was filled with fog Neglecting your physical well-being and appearance Thoughts of running away, or escaping from the situation Thoughts of death or suicide, ideas of how to end your life Ongoing physical symptoms that do not respond Family Caregiver to treatment, Alliance. Caregiver.org. such as headaches, digestive disorders, and chronic neck and back pain
18 CAREGIVER CARE--IRS Information PCC and support groups Respite Area Agencies on Aging Support Support group, family`` Family Caregiver Alliance. Caregiver.org.
19 Questions/Comments?!
20 Thank you! Sponsored with the generous support of
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