Welcome to the TBI-HELP Live Chat

The topic is "Caregiving...Stages of Mourning and Loss"
Our Guest is Mr. Anthony J. Maffia, CSW, Vice-President, Department of Psychiatry, Jamaica Hospital Medical Center

[18:51:29] mod: Good Evening and welcome to our first professionally moderated chat room
[18:59:20] mod: Good Evening Mr. Maffia and thank you for participating in our chat session tonight.
[18:59:51] AJM: IT'S GREAT TO BE HERE!
[19:00:40] mod: Mr. Maffia, I would like to know how a person becomes a caregiver?
[19:01:47] AJM: Sometimes this is not by choice but because of a set of circumstances that happen that are usually outside of our control.
[19:03:02] mod: Can you be somewhat specific? Does taking care of someone with a TBI constitute being a caregiver?
[19:04:57] AJM: Yes, absolutely! What I meant was that we become caregivers because the ones that are effected by injury are people that we love and live with. We are put in a position where we are the only ones that are available to care for them on a regular basis.
[19:07:17] AJM: Rail, interesting that you should mention this. {Mourning and death} Having a traumatic event happen to a loved one is like a death because the person that you once knew before the trauma is not the same person after the event ...hence the uninjured or healthy person has in a way died.
[19:09:31] mod: Are the stages of death the same for someone who has a loved one still here but in an altered state?
[19:12:12] AJM: In some ways they are! You feel the loss of the person that you know...there is a void because that person is no longer with you ...there is a certain amount of adjustment that you go through - mourning the loss of that person while beginning to adjust to the new feeling and circumstances of this new person.
[19:13:51] mod: Mr. Maffia is in the process of answering arc's very interest and pertinent question. Please be patient "[19:09:37] arc: Mr. Maffia: Can you be mourning and not know it? What would I feel?"
[19:14:21] AJM: Got your question but my mind works faster than my typing. the answer is that yes you can...sometimes.  People become so used to the rigors of caring for a person that they incorporate these events and feelings into their life. After a while you become unaware of the strain and continue to perform these duties without realizing that you are sad.
[19:15:08] AJM: The answer to the second part of you question is that sometimes you would not know it was happening to you
[19:17:53] AJM: There are these signs when the patient is first diagnosed after and extended period of time or upon the death of the person
[19:16:22] mod: Is there a specific timetable for mourning and loss?
[19:20:08] AJM: To answer the question about a specific timetable for mourning the answer is that there is really no timetable for mourning. Many people have to move at their own speed and that will vary greatly from one indivdual to another.
[19:20:22] mod: How long does the mourning and grief process take?
[19:21:59] AJM: to further elaborate - may people are rushed by their family or friends stating that they need to move on or to get over the loss. This is easier said than done...Grief and mourning are very special things that need to be experienced and worked through by those involved .
[19:22:56] mod: How does a caregiver deal with guilt?
[19:25:14] AJM: Many caregivers do whatever is possible to help the person that they are care for, however they are sometimes fighting a downhill battle because of the debilitating nature of the patients condition. the care giver needs to understand that they are only human and can only do as much as they can.

Inserted for clarity -[19:24:57] arc: New question: since my loved one had a tbi he is not himself. How do I get him to realize his issues and become the partner I once had and the father he was to our kids. 
[19:28:06] AJM: Unfortunately the damage done by a tbi sometimes alters the person that we once knew as a kind and loving person...the problems becomes that since this altered stated progresses without any remission we become more and more upset and frustrated with the situation...It becomes worse when we have children that are being effected by the problem
[19:28:55] AJM: to continue it may be a good idea to seek out support groups where you may be able to benefit from the wisdom and experiences of others
[19:31:08] mod: Who cares for the caregiver?
[19:33:18] AJM: Unfortunately, sometimes no one cares for the caregiver not even the caregiver themselves...Caregivers do just that give care and they spend much if not all of their time providing for the needs of the person that they love...but at the same time they are sacrificing much of them selves that people do not see and this continual sacrifice begins to deplete their ability to care for the person they love as well as themselves

added for clarity - [19:35:57] arc: How can I handle my mourning over my loss. I need help!
[19:36:09] AJM: firstly, your ability to say that statement alone is a good indication that you have placed these feeling in some order and priority.
[19:38:02] AJM: To continue, getting past your feeling isn't really what you might want...first. identifying them is a good start. the second part of this is to try to attach yourself to a self help group so that you can get some insight...a third possibility is to begin to recognize what you used to like and attempt to re-connect yourself to these things
[19:40:08] AJM: To continue....your mourning is something that you will need to be patient with and will need to let go of a piece at a time..
[19:42:23] AJM: Some of the issues will be more difficult to deal with because they are so deeply involved in your feelings about yourself as well as the person that you cared for. Mourning is sometimes something that you don't want to let go of because it is the only world that you have known for so long ...you want to fell better but if you do then what//


[19:49:53] AJM: Sorry but we had a liitle tech problem
[19:50:51] AJM: ARC: Many of the feeling that you are expressing are part of the mourning process.

added for clarity - [19:48:54] arc: sometimes I am angry - then sometimes I am blue and then sometimes I just don't care. my feelings go up and down like a roller coaster. Mourning is a tough thing I guess but when I feel that way I suddenly back lash and say who cares!
[19:51:44] AJM: ARC...Some of the anger that you feel by lashing out is also part of the process maybe you can tell me a little about some of the things that make you so angry?
[19:54:02] AJM: Sometimes wanting your own way is part of the back lash that many caregivers feel because they have given of themselves for so long that they want for them. Many of their wants and needs have been postponed for a long time and they are resentful
[19:53:37] mod: As a caregiver, I feel bad about feeling good. Why? and is this normal?
[19:55:37] AJM: To MOD...Caregivers have issues about feeling better after the person that they have cared for has died. Many times feeling better is felt to be a betrayal of the person that died.
[19:57:06] AJM: Let me explain a little more...Many people feel that we keep the persons spirit alive and sometimes the person themselves alive by always feeling bad,, ,if we feel better we are coming to the realization that that person is dead
[19:56:32] mod: Who helps the caregiver when family is not available?
[19:58:19] AJM: Help for the care giver when the family is not available is a real issue....sometimes caregivers go it alone and we have talked about some of the problems that this brings with it

Added for clarity - [19:59:22] arc: Sometimes he is disabled and sometimes he is a slick operator who hides behind his disability and neglects his obligations. One moment I feel sorry for him and the next minute I want to kill him so he would be dead.
[20:01:33] AJM: ARC...got you question about this very difficult situation...it is never easy to deal with someone who is manipulative...this could be part of the disease entity but part of it may always have been part of his personality...
[20:02:29] AJM: The problems that you are experiencing sound as if they have turned yourself and your life upside down...there are some times when counseling will help and other times when there ins nothing you can do
[20:03:36] AJM: To continue - it may be time that you reevaluate your situation and come to a decision that may be at first painful but may be helpful to all involved

[19:59:07] mod: Mr. Maffia, I see that our first session is almost over. Thank you for your participation and we look forward to having you again
[19:59:40] AJM: It was very nice of you to invite me and hope that this was helpful.

##