Welcome to the TBI-HELP Live Chat

Today's topic is: "Caregiving - issues and experiences"

Our Guest is: Ms. Connie Carrion, Caregiver and Assistant Speech Pathology at Jamaica Hospital


[19:08:03] Mod: Good evening everyone! Tonight we are very happy to have Ms. Connie Carrion, Caregiver and Assistant Speech Pathology at Jamaica Hospital as our guest speaker. Good evening Ms. Carrion!
[19:09:31] Ms. Carrion: Good evening and it is my pleasure to be apart of this discussion group this evening. Thank you for inviting me
[19:10:19] Mod: Rail: Connie- could you give us a quick outline of how you came to be a caregiver?
[19:10:47] Ms. Carrion: Rail: I became a caregiver 4 years ago when my grandmother was hit by a motorcycle crossing the street. She was admitted to Jamaica Hospital and sustained traumatic brain injury. After leaving the hospital she came to live with our family
[19:12:13] Mod: What was your role as a caregiver?
[19:12:37] Ms. Carrion: I became a secondary caregiver, with my mother being the primary caregiver. At that time my mother was working and I was the sole caregiver three days a week.
[19:13:32] Mod: Rail: What were her deficits that you had to cope with?
[19:14:33] Ms. Carrion: Rail, to answer your question some of her deficits that the family had to deal with were memory loss, problem solving issues, balance was off and she was not very stable on her feet.
[19:15:01] Mod: What were some of the responsibilities as a caregiver?
[19:16:01] Ms. Carrion: Some of our responsibilities were taking care of here personal hygiene, helping with feeding and walking up and down the stairs. This job was and still is a 24 hour a day responsibility.
[19:17:31] Mod: Rail: In the community support services what have been the areas of the greatest progress over your 4 years experience. And what has been the most lacking?
[19:19:08] Ms. Carrion: Rail: Jamaica Hospital offered a wealth of support services. Out patient services, including physical therapy, speech therapy and occupational therapy as well as behavioral medicine, which included cognitive retraining, community re-integration etc.
      To continue with your question the least area in community support was within our own family. My mother is an only child and there is no one other than her, myself and my sibling to take care of my grandmother. We share in the responsibilities in her care to give my mother some down time.
[19:22:20] Mod: What are the pros and cons of being a caregiver?
[19:24:10] Ms. Carrion: Mod: The greatest pro is she is alive and living with us. They didn't give us much hope but with their help and concern she made it! The staff was just wonderful, very supportive. Again, to continue with the question. The cons of this is that our lives changes. My mother had to quit working to care for her. There were time when we just couldn't do what we wanted. Plans had to change, like on the weekends I couldn't go out, it was my turn to relieve my mother. The demands were high.
[19:28:08] Mod: What are some of the emotional issues that affected your family?
[19:30:11] Ms. Carrion: Some emotional issues that my my family had to face were confusion, anger, hopelessness and frustration. There were times we wanted to give up but we pulled it together because we're a family. I believe that family is important in all situations, but when you are dealing with something like this situation, you realize how very important it is. You need to be able to rely on others to help with emotional issues as well as the physical ones. Where possible you should be able to depend on outside resources such as church organizations, support groups as well as the extended family and friends. The hospital provided us with great support. Some of which included telephone numbers to call, educational materials to refer to.
[19:37:43] Mod: Rail: Was there a point where your grandmother seemed to stop gaining ground in the recovery and rehab?
[19:38:47] Ms. Carrion: Rail: good question. She did reach a point where therapy was not working. At that point we had to work with her more. We became her therapist. With home assignments we were able to help her regain ground and help her make progress. We had to reinforce what the therapists had worked with her, the basics such as dealing with emergencies, problem solving.
[19:41:43] Mod: What do you see happen inside your family while caring for your grandmother?
[19:43:33] Ms. Carrion: Mod: Good question. At the beginning we had a wonderful support system. There was help from the extended family members such as my grandmothers sisters and brothers, but as time passed this support systems diminished.
[19:44:19] Mod: Sue: What about an adult day center for socialization and respite for the caregivers?
[19:45:00] Ms. Carrion: As far as a day center for socialization and respite she would not even consider going. Also, the insurance did not cover adult day center.
[19:48:17] Mod: Sue: Finding avoidance from those who did care seems to be a big issue in care giving?
[19:48:41] Ms. Carrion: Sue: It is very upsetting to the entire family because you feel that everyone will always be there for each other in time of crisis. My mother was always available for everyone at anytime and now her support system was not there.
[19:49:50] Mod: What have you learned from the experience?
[19:50:29] Ms. Carrion: Mod: I am still learning Each day brings new experiences. She does different things each day and that bring about new challenges for us to handle. She is only 69 years of age but her mentality is that of a child. That is hard to accept and to take care of that is an adult but with that mentality. What we have learned from this experience is that caregivers need an extra supply of patience!
[19:53:14] Mod: Sue: As a caregiver I find my strength in the achievements that I see each day. Its long hard work but the rewards are the progress. Keep it up its all worth it!
[19:54:34] Ms. Carrion: Sue: You are absolutely right! The rewards out weight the difficulties.
[19:54:59] Mod: Patricia: The "role" reversal that occurs can be difficult. Any tips for coping?
[19:56:29] Ms. Carrion: Patricia: We go by the Serenity Prayer. Patience, persistence, taking one day at a time, and most importantly Love! You also have to remember yourself. If you don't take care of you, how can you take care of anyone else. You have to find some time during the busy day for you. Sit with a cup of tea, relax with the TV or just shut out all outside variables.
[20:00:24] Ms. Carrion: Sue: My mother joined weight watchers, I joined yoga. Just sometime for ourselves. It does regenerate us to go on with our responsibities as well as our self esteem.
[20:01:58] Mod: Well I see that our time is up. I would like to thank Ms. Carrion for providing us with a very interesting chat tonight!
[20:02:10] Mod: Thank you all and good night!
[20:03:03] Ms. Carrion: Thank you for inviting me to participate in this wonderful chat session and for allowing me to share my experiences as a caregiver with you. My advise to all caregivers is to take care of yourself! Good night and thanks again.