Depression Support Groups?

[Bellithorp]

hello everyone. I am a single mother of a CF child. My daughter is 8 years old and was diagnosed at age 4 after I pushed the doctors to test for CF since she kept having chronic pneumonia episodes. We have come along way from 4 years ago and have buckled down on the treatments routine a lot and my daughter seems generally happy. I find myself randomly breaking down due to the knowledge of life expectancy for people with Cystic Fibrosis. I know the future holds possible medical advancements and that we have already come along way which really excites me! I don't know if I am posting this as a rant or just even for tips or help from other parents. What do you do or who do you turn to when you are feeling down about the outlook of your child's life? I understand I should be grateful for the years I have with her so please do not take me wrong, I am trying to enjoy every second of her and treat her like a normal child. I feel at times though I am being selfish by working or spending a mommy night out because I know of her condition, I live in constant guilt. Am I doing everything I can to help her life and help her have the best life? Is there more I can be doing? We don't have a great support system out here and her father is barely in the picture, which makes me feel even guiltier. I know she leans on me for 100% everything.

Any tips? Do you go to support groups or have someone to talk to?
:/

 

[kenna2]

I'm the one with CF (I'm 31), but at one point my parents did end up seeing a therapist when I was in my teens. I currently see one and I think it's highly beneficial. We both have learned coping skills and how to communicate better to each other and it's made things a lot easier on both our parts. Sometimes it's nice to have a neutral person to just talk to and keep you on track. There is no shame in it. Being a parent to a child with CF is difficult and takes a lot of patience. What you have to do is play the hand you were dealt and accept it. It's difficult at first but once you get it, it becomes easier. A therapist can help with this. Continue to look at and for the positive and not the negative. She is very lucky to be alive in a time where there are finally new drugs that are coming out to help. Her future is bright!

 

[Printer]

OK, I have Cystic Fibrosis. I will be 77 in January. I have been married 54 years. From ages 16 t0 20 I was a lifeguard on a Commonwealth of Massachusetts, Atlantic Ocean Beach. This was a civil service position and requires certification prior to each summer. I played College Varsity basketball (not well but I played) I have two college degrees.

I did this before the gene was identified and prior to the CF drugs and treatments that are available to CF Patients today.

At age 76, i am NOT the oldest patient in my CF Clinic. There are MANY CF Patients living in the US who are in their 80's.

I get the impression, from your post, that your DD is not being seen at an approved CF Clinic by a CF Specialist. This is critical, not only for your DD but also for you..

 

[Printer]

Bellithorp:

If you would tell me the name of a large city near you, I would be happy to assist in finding an APPROVED CF CLINIC in your area.

Bill

 

[jricci]

It’s completely understandable that you are experiencing depression. You’re not alone. Having a child that has been diagnosed with a progressive, chronic disease can be life altering. As an adult with CF, I struggle with depression and anxiety myself and am on medication and go to therapy, which has been helpful. I encourage you to try and find a therapist who has experience in parenting a child with a medical condition. Ask your CF clinic social worker if they have any recommendations for someone in your area. Some CF clinics also have support groups for parents. If you’re at a larger children’s hospital, they might have a more general support group for parents of children with chronic conditions.

There is a wonderful organization called the Cystic Fibrosis Research, Inc. that offers a range of programs for both patients with CF and their caregivers. They’re based in CA so many of their programs are located there, but they also have a monthly support group for CF caregivers that can be accessed via phone. Some other programs include retreats, reimbursement for counseling services, and a CF Family Education Conference. Here’s some info. from their website:
http://www.cfri.org/support.shtml
• CFRI provides a monthly CF Caregivers Support Group, which is facilitated by a social worker well versed in issues facing CF caregivers. This support group is open to those able to participate in person, as well as to participants nationwide by telephone.
• Our annual "Embrace" Mothers Retreat and CF Summer Retreat for young adults with CF, their family and friends, provides support, education and fun in a safe environment.
• CFRI is proud to offer support for individual counseling services through our CF Quality of Life Program, a Living Legacy of Peter & Kathy Judge. Through this program, CFRI covers individual co-pays, or provides up to $120 per session for five sessions of counseling with a licensed therapist. Individuals diagnosed with CF and family members (parents, siblings and spouses) are eligible.
• CFRI’s annual National Cystic Fibrosis Family Education Conference brings together those impacted by CF – including patients, families, care teams, and scientists – with experts in the field of CF for a weekend of information and support.

 

[Bellithorp]

Thank you for your support and concern! we go to the CF clinic at Kaiser on Los Angeles. We have just switched to the CF Center at CHLA in Los Angeles this month and that will be our new home clinic for cf. very excited about our first appointment at childrens hospital!

 

[Bellithorp]

It’s completely understandable that you are experiencing depression. You’re not alone. Having a child that has been diagnosed with a progressive, chronic disease can be life altering. As an adult with CF, I struggle with depression and anxiety myself and am on medication and go to therapy, which has been helpful. I encourage you to try and find a therapist who has experience in parenting a child with a medical condition. Ask your CF clinic social worker if they have any recommendations for someone in your area. Some CF clinics also have support groups for parents. If you’re at a larger children’s hospital, they might have a more general support group for parents of children with chronic conditions.

There is a wonderful organization called the Cystic Fibrosis Research, Inc. that offers a range of programs for both patients with CF and their caregivers. They’re based in CA so many of their programs are located there, but they also have a monthly support group for CF caregivers that can be accessed via phone. Some other programs include retreats, reimbursement for counseling services, and a CF Family Education Conference. Here’s some info. from their website:
http://www.cfri.org/support.shtml
• CFRI provides a monthly CF Caregivers Support Group, which is facilitated by a social worker well versed in issues facing CF caregivers. This support group is open to those able to participate in person, as well as to participants nationwide by telephone.
• Our annual "Embrace" Mothers Retreat and CF Summer Retreat for young adults with CF, their family and friends, provides support, education and fun in a safe environment.
• CFRI is proud to offer support for individual counseling services through our CF Quality of Life Program, a Living Legacy of Peter & Kathy Judge. Through this program, CFRI covers individual co-pays, or provides up to $120 per session for five sessions of counseling with a licensed therapist. Individuals diagnosed with CF and family members (parents, siblings and spouses) are eligible.
• CFRI’s annual National Cystic Fibrosis Family Education Conference brings together those impacted by CF – including patients, families, care teams, and scientists – with experts in the field of CF for a weekend of information and support.

thank you so much for this information! I had no idea where to look! I will look into this thank you so much!