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Helpful Things Before and After Provider Care
The Internet
Other
Provider Care He did Camp Mak-A-Dream, which was for young adults 18-24, in Goldcreek, Montana. He loved that place! -Mother My family was helpful to a point, and became unhelpful after a while. That’s a whole other therapy session (laughter). I can’t think about that right now. We really didn’t rely on anyone. We tried to, I hate to say we tried to get through it ourselves, but we didn’t think of a lot of resources to lean on. -Father The continued contact with the doctors and the nurses, and the PACT team, and the genetics team, everybody there and your department (psychiatry), they were involved making sure that we were coping with everything okay. To be invited back to attend services and seminars for bereaved parents was helpful. We feel that Boston is our home, one of our homes. We feel Boston has a very special feel for us and I think that just knowing that we have those continuing channels of support because the staff at Children's Hospital Boston were all part of Paulina’s extended family. -Mother The resources here at Children's, of course. They have the bereavement workshop and the memorial service now. That’s very nice. The Center for Families has been an excellent support. They’ve been very helpful to us. I just love them. -Mother I joined the Compassionate Friends group for families who have lost one or more children. And that’s been really helpful, just that unspoken bond where you don’t have to say anything and you know that people understand how you feel. That’s been very supportive. -Mother There were a number of guiding lights at the hospital that we dealt with, including our pediatrician who was in our community that really helped us to navigate that journey. -Mother We always looked at the fact that our son would die at some point, at a time that wasn’t necessarily natural in the way all other children progress and grow, so in working with the psychologist she really taught us to treasure everyday and to live everyday in the present and gave us the space I needed to do anticipatory grieving and found the space with our family counselor to do that anticipatory grieving without being judged. I think that helped quite a bit actually, being able to talk through the "what-ifs", being able to talk through those kinds of situations on a regular basis whether it was with his doctor or the psychologist was extremely helpful. -Mother Just Venting with the Therapist I remember the first visit with the therapist. I was just so overwhelmed and so devastated that my first visit, I just let everything go and out. It was a relief to be able to tell somebody how I was feeling. I couldn’t do that with my family so much after Andy passed because not everybody understood me. Instead, I felt as though everybody wanted me to be where they thought I should be. So, I was really more angry with them and bitter. I just kind of shut down with them, so it was good to be able to go to someone who had nothing to do with any of it and was just there to hear what I had to say. That was helpful. -Mother We also had in-home nursing, who provided as much support to us as to our son because they would listen and they would be there for us as much as for him, and talk through the decisions we were making with regard to his care. They had been with us for a long period of time when you look at the trajectory of his life, and that was very helpful as well. -Mother We had, helping us all the way through this, a phenomenal grief counselor at Children's Hospital in the Coping Clinic, who helped talk to us about how to talk to our four year old daughter. -Mother My Psychologist, an Incredible Therapist My husband and I and our daughter saw a psychologist here to help us with the trajectory. We saw her after she died as well. I would say the combination of this incredible therapist who helped us think about the fact that she was going to die, helped us be with the fact that she was going to die, and helped us right after she died. We went from seeing her once a month to every two weeks to once a week. After she died we saw her every two weeks. She saw our four year old daughter a couple of times before and a couple of times after. I would say that was the most important resource we had. Our therapist is a very spiritual person, which was tremendously helpful. My husband and I were fairly spiritual already and our spirituality grew ten fold. -Mother Our social worker/case manager was wonderful. -Mother When we left the hospital about eight weeks before she died we met with the PACT team at the hospital and they were very helpful in explaining the process and what to expect for her at the end. -Mother Most of the nurses we worked with were very caring, very down to earth. It was really helpful. -Mother All along, the PACT team at Children’s was an incredible resource which every parent should have access to when they have a terminally ill child. We had tried to talk to people before about how our daughter might die and it was very difficult for anybody to have that discussion with us. It was a subject that people didn’t really want to face. It was our first or second meeting with the PACT team that we again asked the question and they walked through with us how she might possibly die. As we got closer to her dying those discussions became more intense and more specific. I think without them it would have been very difficult. We were as prepared as we could be. We got advice on what not to do and other suggestions. They were always ready to give support to our kids. Our kids have not taken advantage of that, but it was an invaluable resource to us just to have honest discussions about end of life. -Father We have joined a support group at Children's Hospital called Hope. It’s a group of twelve parents meeting biweekly just to talk about the whole process of grief. I’ve only been once but it was very helpful just to hear how other people are coping with their grief. -Mother I think the other thing that was a unique gift for us was the pediatrician herself. She is an extraordinary person to start with but she really did help us. She came to our home more than once. When we called the doctor’s office they were all primed, and it’s not that we’re more important than anyone else, it was just that we were dealing with a life threatening illness. It just made a difference to know that when the rubber hit the road and it was really important she was there. She came for eight weeks every weekend. -Father The Palliative Care Team (PACT) is impossible to beat because they are trained to deal with walking the pathway to the end of life and they are very skilled at it. I cannot imagine going through this without them. They are the one universe that manages to make you feel that they do have time for you. Everybody else truly is on a schedule. We were treated well by everybody, but the PACT team was extraordinary. -Father What was really helpful was the PACT team, and everybody involved with the PACT team. That was the geneticist, the Reverend, and everybody there who came out and met us when we were staying at the Family Inn, which was the family home for transplants. The continued contact with the doctors and the nurses, and the PACT team, and the genetics team, everybody there. And the psychiatry department, they were involved making sure that we were coping with everything ok. And to be invited back to attend services and seminars for bereaved parents... We did come back for that seminar in April for a service on bereaved parents. -Mother The support and love and kindness that was shown to us in the most difficult time of our lives. Absolutely the most beautiful side of human nature came through. -Mother The Reverend and the Psychiatry Team Everybody’s gentleness and understanding, and the reverend's encouragement for us to explore our spirituality and have wonderful theological discussions because it’s a time when you begin to question what it’s all about. The psych team that came in and checked on us and kept a watchful eye on me and the social work team who worked so hard on our behalf to ensure that Paulina and ourselves got everything that we possibly could. And so in terms of the community, you were our community, and then we had to move. -Mother The doctors were the most helpful for the most part with regards to the technical aspects of care for him. The director of the PACT team at Children's was very attentive and very concerned about not only how he was doing medically but also what his day-to-day quality of life was like. She translated what was happening to him medically into those terms to us. -Mother I think that we drew strength from our friends, the parents that we knew at Perkins’, the Infant-Toddler program met on a weekly basis, the volunteers where we left the kids with the teachers, and all the parents went upstairs for coffee hour if you will. The parents there were a great support to us. There were a number of guiding lights at the hospital that we dealt with, including our pediatrician who was in our community that really helped us to navigate that journey. -Mother One of the things that was great from the Children's Hospital aspect was the room that they gave us to rest privately in. When we were out in the waiting room, there were other parents out there experiencing a number of different things and many of them were talking to my mother and they kept telling her “well, don’t worry everything is going to be fine”, and in my heart I knew it wasn’t going to be fine. It was kind of frustrating to hear that and it was great for me to be able to go back and not have to hear other people’s stories. It wasn’t helping me any to give me false hope. So that private resting spot was great. The fact that they reassured us that if at anytime during the surgery we wanted to call and check on things they told us who we could go to and that somebody would come right down and explain everything that was going on. I felt like at any given point if I wanted to stand up and say “Hey, what’s going on?” they would have been available to do that. That was very comforting for us, for me anyway I shouldn’t speak for anybody else. That was good. After she died they let us into the operating room and I’m not sure that they do that. I don’t want to get anybody in trouble by saying that, but they let us go in and hold her while they were doing CPR on her. I thought that was great because I felt like I was there when she actually died. -Mother As soon as Carrie had her setback we called our pastor. We weren’t extremely involved with the church at that time, we just went to church but that was about it. Three hours later our pastor showed up here. To me, that was just amazing because I know him from seeing him but we didn’t have a personal relationship. So to have him there, and then we started immediately getting cards from our church family. Just the support and the love that we felt from them, we knew it was God showing us His love. Even during that time, there were times where John would be strong and I would be so weak and then fifteen minutes later it was the opposite. We know it was only the strength of God because it was such a difficult time. After that, after we lost Carrie, we know that we grieve with hope because we know that Carrie’s in heaven. If we didn’t grieve with hope, I don’t know if we could have gone on not knowing that I wouldn’t see her again someday. I think our faith plays a huge role in it. -Mother We always knew that James would die at some point, at a time that wasn’t necessarily natural in the way other children progress and grow. Working with a grief counselor really taught us to treasure everyday and to live everyday in the present. It gave us the space needed to do anticipatory grieving and found the space; a space, our family counselor, to do that anticipatory grieving without being judged. I think that helped quite a bit, being able to talk through the “what-ifs,” being able to talk through those kinds of situations on a regular basis whether it was with the Palliative Care Team or our counselor was extremely helpful. It provided an opportunity to have clear and open dialog with my husband. We weren’t talking about it all the time, but having those specific times was definitely helpful. -Mother From the hospital, my entire family and I got amazing psychological support from the Jimmy Fund and its psychology department. The psychologist did a family study on us when we were first admitted, and pretty much knew what our strengths and weaknesses were and really stuck to honoring them. The medical team was in sync with us. The Internet We did use the web site to post a lot of information about our son and every day we would do updates for everyone. That was a great way to keep everyone in our lives connected with what was going on and for us to spill out what we were going through and not have to call everyone a hundred times. That web site was really helpful. We used those CarePages quite a bit to update everyone. That was very helpful in letting people know what was going on. -Mother On the CarePages, we’ve got over 500-600 people, and each one of them knows another 10 or 100, so Paulina’s story went around the world. We had people in the UK, in Ireland, and Canada, and Australia, and New Zealand, and Norway, and Holland, the Cayman Islands. So Paulina had this huge circle of love because my husband and I had both lived in different places around the world and had lots of good friends. So everybody knew Paulina. She was so strong and determined, and she was unstoppable. -Mother Fortunately for us, shortly after Jackie was diagnosed the Internet became a powerful tool in everybody’s life. There was a support group specifically for families of children with this specific illness. Their primary focus is not fundraising; it is support for families. You can only support each other a little bit but it really becomes critical. Over the eight years that she was ill, that support group was invaluable to parents. -Father Other Finally a friend said “Why don’t you go do some yoga?” He started a yoga studio. He said “Get out of your head and get into your body.” I found this to be the most helpful thing for me out of anything that I tried. What I didn’t realize, and I found this out in the past year or two, is that people who are grieving have similar kinds of aches and pains. Someone told me a year ago that it’s called "frozen shoulder", its grief shoulder. I said I’ve read all the grief books for parents who are grieving children and no one mentions physical pain. The yoga was a huge thing for me. I would go to yoga and I would do these stretches. Yoga is much more than physical exercise like running and working out. You are working with all sorts of things. If you do yoga, you will understand. If you don’t do yoga you can’t really understand until you start to do it that you are learning to sit with yourself and be in the present and you are struggling to get in these postures. You are working with your own limitations. In yoga, you are not supposed to be competitive and you’re not supposed to push yourself too much, but you’re supposed to work with this edge of comfort and discomfort. You may get in to a particular yoga stretch and you might feel uncomfortable and you’re supposed to breathe through it and work with it. As I would be in these yoga poses in the first year of doing yoga, sometimes I would want to cry and the yoga teacher would say that these poses can bring up emotions and stuff. And I would think of my daughter’s physical discomfort because I would be in physical discomfort in this pose. I would think about her and I feel so sad that she went through this. I would try to breathe through it and just sit with it and work through it and it would also bring up a lot of emotions. I had to learn to sit with the pain. -Mother Cindy Bullens is a woman who put out a CD for grief called “Somewhere Between Heaven and Earth” and she has performed all over the country and has helped grieving parents. We actually had her perform at our fundraiser. Her music puts to words what we feel. When somebody introduced me to this CD two years after my daughter died, I played it over and over. She has a web site. Her daughter died at eleven years old from cancer. Each song addresses what it’s like to live with grief and find strength and hope. She has songs like “I’ve got to believe in something.” Her songs talk about how nothing can take that love away and just navigating through grief. It’s just very hopeful music of survival of grief, but validates the deep pain and it was one of the most instrumental things that helped in my grief was this music… -Mother Music is something else that can also be very helpful, to find music that’s encouraging and uplifting. -Mother Yoga and the Tai Chi are helping me regain my balance, grounding and focus. -Mother |
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Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated: May 22, 2008 |
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