Welcome to the TBI-HELP Live Chat

Today's topic is: "The Role of the Caregiver"

Our Guest is: Ms. Susan Michalowski, Caregiver

[19:01:07] Mod: Good Evening to all. Tonight our guest speaker is Ms. Susan Michalowski. Susan is a Caregiver and here topic of discussion for this evening is "The Role of the Caregiver". Welcome Susan and glad that you are able to join us.
[19:02:38] Susan: Thanks for having me here tonight. This site is providing a great service to caregivers and survivors. As a care giver I believe that being a strong advocate and well informed as to resources is as important as the care itself.
[19:03:27] Mod: What does being a caregiver mean to you?
[19:05:31] Susan: getting all the services that one is entitled to that they need, getting access to info about new and innovative treatments and getting the best possible home care help available. to help the brain injured become all they can be.
[19:05:51] Mod: Rail: Susan - When you first were "thrust" into the role of Caregiver, in retrospect what was the most traumatic part of that process?
[19:06:51] Susan: coping with reality and knowing there was a lot of work to do and to get all the help possible. Keeping the family in agreement was hard too. They were also living this.
[19:08:19] Mod: Rail: Was there sufficient pro-active help for you and the family during the early stages?
[19:10:29] Susan: Rail in answer to your question, yes there was. Eric was in the Brady Institute where he and we had access to drs. that were willing to talk, answer questions, give support and suggestions. Family meetings where the entire team spoke were a part of program.
[19:11:24] Mod: Did you find that this support system was a help to you and your family and if so, in what way?
[19:13:01] Susan: Great question. I found it to be very supportive. There were also other families to speak to also.
[19:14:49] Mod: As a caregiver do you have many roles an if so, what might they be?
[19:16:16] Susan: As a care giver you not only wash, feed, dress ect. but learn to be an amateur speech therapist, OT< PT, put on braces and splints.  You become dietician, motivator, cheering section, advocate along with as in this case loving caring parent
[19:18:01] Mod: Rail: Susan - given your "years" of exposure to the TBI Caregiver area, do you think there are sufficient knowledge based resources for individuals and families in this situation?
[19:19:19] Susan: There is more available now than a few years ago. Now you go on the net, type in TBI and get loads of sites to go to. I also have found that more hospitals have acute TBI sections which is a major plus.
[19:19:53] Mod: Margo: Of all the things that you do as a caregiver, what is the most difficult?
[19:21:21] Susan: Margo the most difficult is getting the proper care. Everything seems to take a fight to get, Eric has to be evaluated and then re evaluated. Getting the best trained home care help is very hard. You really need a good person to share in the tasks of caregiving and since it is so hard to have someone in the home all the time you have to really try to get along.
[19:22:39] Mod: Trisha: Caregivers are usually overworked and under a lot of stress. How do you not burn out?
[19:24:00] Susan:  Yes Tricia caregiving is really hard and stressful. You can easily burn out. You shouldn't be afraid to get professional help if needed. Speaking to someone can help. You need a realistic plan that includes other family members as well You all have a monumental task and you need to do it together.
[19:25:29] Mod: Do you ever get any recreation?
[19:26:47] Susan: That's where a good day center enters into the picture. It gives the caregiver a respite from the "job" and it gives the family member the needed peer socialization, and sense of belonging that they need. It also provides a needed structure to their day.
[19:27:44] Mod: Welcome to Vince! Vince asks a question about the battle t get the right care...Why is that...shouldn't that be automatic to speak?
[19:29:01] Susan: Vince unfortunately all we want is not always given. Insurance regulations enter into all decisions about what can be done. You need to learn the system and try to not only work with it but around it.
[19:29:24] Mod: Vince: How did your family react when you decided to care for your son at home?
[19:30:47] Susan: Home care is an intrusion in everyone's life. My son was only 19 and we all decided he could do much better at home with our care, outpatient therapy and the guidance of good mds. We learned to cope.
[19:31:32] Mod: What advice do you offer to other caregivers?
[19:33:44] Susan: Follow your heart, emotionally and intellectually. You go thru many emotions as anger, grief, self pity and of course you grieve for what the family member has been thru. Don't be ashamed to ask for help. You can't do it alone.
[19:34:25] Mod: Do you feel that there are different levels of caregiving?
[19:35:43] Susan: Not really different levels but there are different ideas as to what constitutes good care. You can do the minimum or really get out there and advocate for the best possible.
[19:37:00] Mod: Mike: Do you feel that having your rehab at home has made him progress faster/
[19:38:40] Susan: Mike at home we not only gave rehab but went to outpatient therapy. We did at home what we were taught there.
[19:40:22] Mod: Igor: How intensive was the training for you and your family in order for you to learn the tech. aspects of caregiving?
[19:41:13] Susan: Igor it was all on the job training as needed. We got lots of info at discharge and researched a lot more.
[19:42:56] Mod: Igor: How did you and your family deal with the uncertainty about your sons care when he first came home...where you scared? What do you do for back up?
[19:43:43] Susan: When he first came home we had home care from the traditional agency. They people sent knew nothing about brain injury. My son was called a bad boy. Eventually we found an agency approved by HRA that allows you to hire and train your choice of aides. As backup I seem to miss a lot of work. Sometimes we have an extra person to call, most times not.
[19:45:01] Mod: Linda: How do you get companionate aides who will work with you?
[19:46:05] Susan: By choosing our own we interview until we find the right people. Hopefully they stay awhile because they also burn out with the long hours.
[19:47:30] Mod: Jessica: How do you keep that family unit together during this time/
[19:48:35] Susan: Jessica you have to acknowledge everyone's different reactions, including anger, frustration, mourning etc. and you have to go one day at a time. Healing is a slow process for the survivor and the family. You need time together away from the hospital or from the house. Go on a family trip to the circus or the mall. Have patience and try not to fight over the trivial issues.
[19:51:01] Mod: Linda: I have to work, do you know of any groups that can help us get good care at home?
[19:51:46] Susan: Linda you can contact your local brain injury association, AHRC or the DOH.
[19:52:33] Mod: Linda: Thank you for this information is very informative. It is important to have a chat room like this.
[19:52:48] Susan: Thanks for chatting with us and asking such good questions.
[19:52:52] Mod: Dorn: Who cares for the caregiver?
[19:53:33] Susan: Dorn unfortunately no one cares for the caregiver. You have to decide your limits and learn to delegate. Trust others to help and to give you the time out you need.
[19:54:24] Mod: Jessica: How do you properly screen qualified caregivers?
[19:56:02] Susan: With the traditional agency supposedly they are screened before coming to your home. NOT always. No fingerprints or criminal backgrounds are looked into. Medical checkups are about the only thing done. You need to ask to references and really check them.
[19:58:24] Mod: How do you manage to hold a job and be a caregiver at the same time?
[19:59:56] Susan: Its not easy. I am lucky enough to have a job that I can take off from as needed. Most places would not allow this. You find yourself always waiting for a HA who is late or just doesn't show up. It takes a lot of energy and lots of missed sleep to do a good job
[20:00:56] Mod: Well, it looks like our time is up for this week. I want to say thank you to Susan for a good session and invite her to return at a later date. Have a good week, and be save. Good night to all!
[20:01:39] Susan: I hope hearing this has helped. As a final word though through all the sleepless nights the aggravation, tears of frustration and the fight to get all the need services I wouldn't do it any other way
[20:03:48] Susan: Good night and thanks for having me here tonight.