Welcome to the TBI-HELP Live Chat

Today's topic is: "Care for the Caregiver"

Our Guest is: Mr. Anthony J. Maffia, Vice-President, Department of Psychiatry, Jamaica Hospital Medical Center

[19:00:09] mod: Good evening and welcome to our moderated chat session. Tonight as our guest speaker we have with us Mr. Anthony Maffia, Vice-President, Department of Psychiatry at Jamaica Hospital Medical Center. He will be discussing "Care for the Caregiver". Welcome Mr. Maffia.
[19:05:14] Mr.maffia: Hello and thank you for inviting me back. Its always a pleasure to talk to the families that visit the chat room
[19:06:03] mod: Mr. Maffia what kind of care does a caregiver need?
[19:08:18] Mr.maffia: The question about what type of care does a caregiver need is one that we can spend the entire session talking about.  First the caregiver needs care and support. This can come from a variety of places starting from when the care giver first becomes involved in the care of the person that becomes ill The caregiver is at first very concerned about the type of care that they will be giving to the patient and is not really to concerned about themselves ...that is where most of the problems begin The caregiver needs to realize early on that they will need help.  They should begin to ask and inquire about services at the begininng of caring but also they need to begin to build a team of sorts to help with the process of caring for the one they love.  I hope that made some sense...
[19:13:11] mod: Old Kind coal: Where can a caregiver go to get care for themselves?
[19:14:12] Mr.maffia: A care giver can go several places for help... They can begin with the institution that there loved one was taken to for rehab. or acute care. They should be able to access information from the Professional staff and from the specialists. They should also begin to speak with those professionals providing services to them and get a grasp on what is available...In a good institution they will have many people at the disposal of the families and caregivers to provide back up and information...
[19:16:54] mod: Green: What can we do to avoid families feeling guilty that they are not doing enough?
[19:17:07] mod: Green: What can we do to avoid burn out?
[19:17:47] Mr.maffia: Green...those are both issues that cut right to the heart of the problem.  Caregivers suffer from guilt all the time...that is because they are faced with problems that sometimes are overwhelming.  They not only have to provide for the physical care of the person that is ill but they are also responsible to those people that also love this person but are not directly involved in the care.  This presents a real problem because for the caregiver they are feeling responsible to everyone for everything.  If something goes awrye they feel it is there fault and must explain to all. As far as burn out goes...this is one of the most dangerous parts of caregiving.  None of us are immune from its effects and we are more vulnerable then we think.  One of the ways to avoid burn out is to carve out a certain time of the day and week for yourself.  Many times caregivers are reluctant to do that because they are fearful that something will happen when they arenot around
[19:23:50] Mr.maffia: It is very important that a care giver not lose themselves in the process of caring for the person they love...therefore it is really important to seek help.  This help might come from family and or friends...professional organizations churches etc. but it should be something that is incorporated into the caregivers routine from the start.  This is something that needs to be addressed at the beginning of planning and something that we as professional fail to realize until later....
[19:26:18] mod: Amanda: That sounds great but most problems arise after you've been home awhile. What then?
[19:26:56] Mr.maffia: Amanda...your question makes perfect sense.  We as new caregivers  don't know what to expect really when we go home...all of a sudden the task that we thought we could handle becomes much tougher than we ever expected.  If we have a family that is involved it becomes time to ask for HELP. Most caregivers don't want to do that because they feel that it is a sign of weakness but it really is a sign of strength. It is always important to know what you can or can not handle. If you fool yourself and continue to fool others you will nefver be abler to get ht e help you need. Mainly because people will always feel that you can do anything...meanwhile you are loosing the ability to render help to anyone.
[19:30:43] Mr.maffia: That is what asking for help and taking help when it is offered is important. Just because someone does it different or not as good as you does not make it bad...it just makes it different. Caregivers should also know that they have rights too!....
[19:31:44] mod: Green: What do you suggest for a caregiver whose loved one is always make them feel guilty?
[19:32:43] Mr.maffia: Dear green ...is the loved one the person that you are caring for or is it a significant other?
[19:33:42] mod: Amanda: Most people that I have seen do not know how to go about finding and using the available resources. It seems that once someone is no longer inpatient, most resources from the hospital end. What can we do to find more?
[19:35:15] Mr.maffia: Amanda...one way to to use a website like the one that we are on tonight. This type of technology opens the world to all of us. We are able to interact with people from all over and we are able to use their experiences and their resources as well as accessing a wealth of knowledge that until recently was buried in obscurity. I would suggest that this would be a great place to start...
[19:37:20] mod: Green: What would you recommend for a family that want to keep everything private?
[19:38:00] Mr.maffia: Green...that is not unusual.  You would never guess by my name but I'm Italian. And boy can we keep a secret! Many families keep things a secret because they do not want the family business to be the talk of the family or they do not want anyone to know their business because they feel it is a weakness. Keeping things private is also a way of maintaining control. In the case of caregiving keeping everything a secret is secluding yourself to a life of secret pain.
[19:42:15] Mr.maffia: A caregiver must be able to talk and share with others because it is from this talking a sharing that they gain knowledge and also strength. It would seem to me that you might want to address the secrecy issue and focus on the need for you, NOT THEM, to get attached to a group of people that will help you understand your situation and your emotions.
[19:45:06] mod: Amanda: Caregiving can be frightening and lonely. I think all caregivers need to realize how important they really are. It's all on the job training and yu need to learn fast?
[19:45:47] Mr.maffia: Amanda...You are certainly correct in your analysis. Most caregiving is scary because it is sometimes by trail and error...and that can be frustrating and upsetting at the same time. People do not realize the stress that a caregiver is under...making decisions that sometimes are made by instinct alone based a a little knowledge and a certain amount of luck.
[19:47:52] mod: Amanda: How common do you think depression is among caregivers?
[19:48:25] Mr.maffia: It is very difficult for people who have never done this to actually understand!! Herein lies the problem...The lack of understanding from those on the outside or from those who see a caregiver effortlessly go through a series a procedures and says..."Boys she/he was great they have everything under control.
[19:49:59] Mr.maffia: They don't need any help!!!! The caregiver in effect shoots themselves in the foot because they may not want anyone to know that they need help. They portray to the outside world that they are in control and that all is well...meanwhile underneath they are slowly withering under the daily pressure of the grind....
[19:51:44] mod: Old King Coal: What would you tell them to do in order to deal with every day stress?
[19:52:42] Mr.maffia: Everyday stress is the thing that slowly depletes the caregiver. That is why it is important to take time out for yourself each day.  This time should be built into the caregivers schedule. For example...if the care giver likes to run than a period of time during the course of that day should be allocated for this activity. Just as an aside...even though caregiving is a tiring task exercise is a good way to keep in good physical as well as mental shape.
[19:55:45] Mr.maffia: Anyway...the care giver should also enlist the aid of others inj the home or in the family to provide assistance at various times. One of the big problems with caregiving is not socializing.
[19:56:01] mod: Caregiving can really isolate the caregiver from the socialization we all need. How can we "see" this before it becomes dangerous?
[19:56:38] Mr.maffia: Many times caregivers stop going to family functions and stopping going to movies, plays concerts etc. The caregiver needs to continue to do these things for themselves so that they remain mentally health. They need to retain their identity and need to hold on to the thing s that make them who they are. When these things become compromised then the caregivers also becomes compromised...
[19:58:12] mod: Amanda: You are right. Most people don't see the sacrifice and effort that goes into caregiving. How common do you think depression is among caregivers?
[19:58:28] mod: Jackie: Mr. Maffia I need help!
[19:59:10] Mr.maffia: Jackie...what type of help?...
[20:00:12] mod: Jackie: I need to understand why my husband don't understand that he has limitations.
[20:00:36] mod: he had a stroke
[20:01:41] Mr.maffia: Jackie...if your husband has had a TBI then sometimes it may be difficult for him to understand because of the brain injury. That however does not make it any easier for you. These are the most difficult types of situations when a caregiver is doing as much as possible and the loved one does not understand...This is not your fault nor is it his!!
[20:03:11] mod: Well I see that our time has ended for this evening. I want to thank Mr. Maffia for a good chat session and hope that he will return for another. Good Night to all, see you next week and be safe. I also want to thank our viewers for their participation in the chat session. Good Night!
[20:03:43] Mr.maffia: Thank you and Good night