The Family Dynamic
ChatMaster (May 28, 2008 3:44:54 PM)
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scott (May 28, 2008 3:45:28 PM)
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EHoxworth (May 28, 2008 3:46:37 PM)
(This user has entered The Family Dynamic)
ChatMaster (May 28, 2008 3:48:29 PM)
hola everyone
EHoxworth (May 28, 2008 3:48:44 PM)
hello
scott (May 28, 2008 3:48:49 PM)
Hello.
rebecca-lcsw (May 28, 2008 3:48:53 PM)
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DannyD (May 28, 2008 3:48:53 PM)
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scott (May 28, 2008 3:49:07 PM)
Hello Danny and Rebecca!
rebecca-lcsw (May 28, 2008 3:49:15 PM)
Hello to you
DannyD (May 28, 2008 3:49:21 PM)
Hi all
ChatMaster (May 28, 2008 3:49:33 PM)
hello everyone
ChatMaster (May 28, 2008 3:50:02 PM)
The chat will begin in 9 minutes
ChatMaster (May 28, 2008 3:54:58 PM)
The Family Dynamic chat will begin in 4 minutes
ChatMaster (May 28, 2008 3:58:17 PM)
Hello everyone! Welcome to the ALS "The Family Dynamic" expert chat with Rebecca, Axline, LCSW, outpatient social worker at the MDA/ALS Center at the Methodist Neurological Institute in Houston & Danny Dandignac, "DannyD," who co-hosts MDA's "Living with ALS" chats and received a diagnosis of ALS in 2000. Danny has been married for 17 years, with two boys, ages 16 and 13.
ChatMaster (May 28, 2008 3:58:37 PM)
We are going to hold this chat on a 'first asked, first answered' basis. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time.
ChatMaster (May 28, 2008 3:59:22 PM)
Welcome to EHoxworth
ChatMaster (May 28, 2008 4:00:42 PM)
Expert host Rebecca Axline, LCSW; works at The Methodist Hospital's Neurological Institute in Houston, she is responsible for developing an outpatient program for clinical intervention. Axline has over 25 years of clinical experience in a variety of settings. In her current role, primary focus is to help patients and family members cope with the stress of diagnosis and treatment.
ChatMaster (May 28, 2008 4:01:08 PM)
This chat will discuss issues such as caring for your caregiver and talking with your children about ALS.
nancy-s (May 28, 2008 4:01:24 PM)
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ChatMaster (May 28, 2008 4:01:30 PM)
Welcome Nancy-s
ChatMaster (May 28, 2008 4:01:48 PM)
We are going to hold this chat on a 'first asked, first answered' basis. Please type the following "ChatMaster, I have a question" and I will add you to the list of chat names and call on people to ask their questions one at time. This chat will discuss issues such as caring for your caregiver and talking with your children about ALS.
ChatMaster (May 28, 2008 4:02:10 PM)
Welcome to the ALS "The Family Dynamic" expert chat with Rebecca, Axline, LCSW, outpatient social worker at the MDA/ALS Center at the Methodist Neurological Institute in Houston & Danny Dandignac, "DannyD," who co-hosts MDA's "Living with ALS" chats and received a diagnosis of ALS in 2000.
ChatMaster (May 28, 2008 4:02:32 PM)
Please let me know who wants to start off with the first question?
scott (May 28, 2008 4:03:48 PM)
I have a question...
ChatMaster (May 28, 2008 4:04:11 PM)
Ok, scott you are first up to ask a question!!
scott (May 28, 2008 4:04:17 PM)
Discussing a diagnosis like ALS with your children can be quite difficult... DannyD, could you tell us about how that has been for you?
scott (May 28, 2008 4:04:40 PM)
Also, Rebecca, I know that each family is different, but do you have advice for speaking with children about the initial diagnosis?
rebecca-lcsw (May 28, 2008 4:05:26 PM)
Danny, would you like to answer first?
DannyD (May 28, 2008 4:05:41 PM)
My kids were pretty young when I was dx'd. They were 9 & 5
DannyD (May 28, 2008 4:06:11 PM)
My oldest had been dx'd with diabetes 2 yrs before
DannyD (May 28, 2008 4:06:44 PM)
we equated it to having a chronic illness like diabetes
DannyD (May 28, 2008 4:07:46 PM)
we told them that there were a lot of similarities in that they don't know what causes it and there is no cure as of yet
DannyD (May 28, 2008 4:08:48 PM)
we answered there questions honestly, but didn't get overly detailed
ChatMaster (May 28, 2008 4:10:05 PM)
Rebecca can you also chime in?
rebecca-lcsw (May 28, 2008 4:10:12 PM)
Of course
rebecca-lcsw (May 28, 2008 4:10:25 PM)
As Scott said, all families ARE different.
rebecca-lcsw (May 28, 2008 4:10:38 PM)
There are some general guidelines that I might suggest.
nancy-s (May 28, 2008 4:10:48 PM)
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rebecca-lcsw (May 28, 2008 4:11:16 PM)
As Danny mentioned, using language and terms that are appropriate for the child's age is important.
DannyD (May 28, 2008 4:11:24 PM)
We did not tell them about the 3-5 yr life expectancy as it is not necessarily accurate
rebecca-lcsw (May 28, 2008 4:12:25 PM)
Answering the questions - but clarifying what those questions are is also important. If they ask a general question, ask them a few more questions to make sure you know what they are asking......
DannyD (May 28, 2008 4:12:51 PM)
I found the kids would ask questions at their own pace, as they processed what we told them
rebecca-lcsw (May 28, 2008 4:13:05 PM)
I would also suggest allowing emotions to be ok, both for you and your children.
rebecca-lcsw (May 28, 2008 4:14:01 PM)
By showing your own emotions but not so to speak "losing it", you show the children that feelings are ok but that you, as their parents, are still going to discipline them and have the basic family structure you have always had
rebecca-lcsw (May 28, 2008 4:14:36 PM)
Good point DannyD; we all have additional questions as we process the information we learn
DannyD (May 28, 2008 4:14:43 PM)
my youngest would be playing outside and come running in the house and ask an ALS related question out of the blue and after I answered it he would go right back to playing
rebecca-lcsw (May 28, 2008 4:15:28 PM)
So letting them know that ANY question is ok to ask.......even though you might not always have an answer.
ChatMaster (May 28, 2008 4:16:07 PM)
scott, do you have any follow-up responses to DannyD and Rebecca's answers?
scott (May 28, 2008 4:16:53 PM)
Those were very good points, thank you. I am curious of DannyD... how have the questions from your children evolved as they've grown up?
DannyD (May 28, 2008 4:17:13 PM)
You can be caught off guard, so I would suggest you word your answers honestly and at a level they can grasp
rebecca-lcsw (May 28, 2008 4:17:59 PM)
I might add - it's ok to check in with them a while later and see if you answered the question they had......
DannyD (May 28, 2008 4:19:16 PM)
They've gotten quite grown up as they have been exposed to MDA telethons and stride & rides and of course the clinic
scott (May 28, 2008 4:19:46 PM)
and you like having them involved with your "MDA family" at clinic and everything?
DannyD (May 28, 2008 4:19:50 PM)
they understand the uniqueness of the progression
DannyD (May 28, 2008 4:20:27 PM)
I think they learn a lot of valuable lessons at clinic
DannyD (May 28, 2008 4:20:47 PM)
For 1 they realize their not alone
rebecca-lcsw (May 28, 2008 4:21:09 PM)
I also truly believe that children can teach adults so many valuable lessons.
DannyD (May 28, 2008 4:21:40 PM)
they also learn compassion and empathy for the struggles of other families
DannyD (May 28, 2008 4:22:35 PM)
and of course to help with the little things when they see someone struggling to do something
DannyD (May 28, 2008 4:22:48 PM)
things not thinks
scott (May 28, 2008 4:23:07 PM)
Thank you both, that's great.
ChatMaster (May 28, 2008 4:23:38 PM)
eHoxworth do you have a question for our expert guests?
EHoxworth (May 28, 2008 4:23:48 PM)
i do
ChatMaster (May 28, 2008 4:24:25 PM)
Please go ahead with your question
EHoxworth (May 28, 2008 4:25:03 PM)
i am a little further removed because the ALS isnt in my imediate family but my boyfreinds dad was recently diagnosed.....how do i act as a good support to the family and him? any adivce or tips, what to do or what to avoid doing?
DannyD (May 28, 2008 4:26:34 PM)
I think offering your help in what ever you can do based on their needs
rebecca-lcsw (May 28, 2008 4:26:58 PM)
Have you had a relationship already with your boyfriend's Dad?
EHoxworth (May 28, 2008 4:27:21 PM)
yes
DannyD (May 28, 2008 4:27:33 PM)
I think the hardest thing to do is not be afraid to talk about it
rebecca-lcsw (May 28, 2008 4:27:45 PM)
Great point DannyD
rebecca-lcsw (May 28, 2008 4:28:01 PM)
I have heard folks say they
rebecca-lcsw (May 28, 2008 4:28:04 PM)
sorry
rebecca-lcsw (May 28, 2008 4:28:22 PM)
say...they don't know what to say so they stop coming or calling.
DannyD (May 28, 2008 4:28:40 PM)
so many friends and family shy away from the patient and their family because they don't know what to say
rebecca-lcsw (May 28, 2008 4:29:01 PM)
Just stating that you aren't sure what to say and as DannyD said - not to be afraid and you will find the best way to be supportive.
rebecca-lcsw (May 28, 2008 4:29:18 PM)
And to be a good listener - no suggestions, just listen......
EHoxworth (May 28, 2008 4:29:51 PM)
thank u so much
ChatMaster (May 28, 2008 4:29:58 PM)
those are great suggestions, DannyD and rebecca!
ChatMaster (May 28, 2008 4:30:02 PM)
Anything else to add?
DannyD (May 28, 2008 4:30:15 PM)
the person with ALS hasn't changed in that if you talked about sports or politics they probably still have that interest
EHoxworth (May 28, 2008 4:31:08 PM)
haha oh yes they do, i dont feel like our relationship has changed which is great because i dont want it to
ChatMaster (May 28, 2008 4:31:34 PM)
makes a lot of sense!
rebecca-lcsw (May 28, 2008 4:31:39 PM)
One more point....be tolerant of emotional swings - both from the person with ALS and your boyfriend......you still need to be able to be yourself in your relatioship with him as well.
rebecca-lcsw (May 28, 2008 4:32:03 PM)
And own your own emotional reactions to it as well.......and seek others for your own support.
EHoxworth (May 28, 2008 4:32:15 PM)
i just dont know what to say to my boyfriend when he calls crying, its hard and i wish i could do more
rebecca-lcsw (May 28, 2008 4:32:29 PM)
Feeling helpless is so hard for us humans
rebecca-lcsw (May 28, 2008 4:32:53 PM)
We all feel as if we need to DO something; you are........by letting him feel safe to cry with you. What an honor..........
DannyD (May 28, 2008 4:32:54 PM)
just being available to listen to him is helping
EHoxworth (May 28, 2008 4:33:43 PM)
Thank you Danny and Rebecca so much for your advice!
rebecca-lcsw (May 28, 2008 4:33:52 PM)
You are so welcome; take care of yourself.
EHoxworth (May 28, 2008 4:34:02 PM)
right back at you!
scott (May 28, 2008 4:34:12 PM)
ChatMaster - I have a question, unless EHoxworth has another.
EHoxworth (May 28, 2008 4:34:19 PM)
no, go for it
scott (May 28, 2008 4:34:49 PM)
Caregivers are pretty amazing people... I was hoping to hear from Rebecca as to some suggestions to show appreciation of caregivers.
scott (May 28, 2008 4:35:08 PM)
Also, maybe DannyD could share some successful attempts to show his wife how appreciative he is.
rebecca-lcsw (May 28, 2008 4:35:20 PM)
Well, I can start and DannyD ...just chime in
rebecca-lcsw (May 28, 2008 4:35:36 PM)
Validation and verbal thanks........are so easy and so overlooked
rebecca-lcsw (May 28, 2008 4:36:17 PM)
Time off -- like staying with the person with ALS so that person can just do something.......like go to a movie, or dinner, or any thing else.
rebecca-lcsw (May 28, 2008 4:37:07 PM)
As DannyD mentioned, if sport etc are part of the person's life......one caregiver said a former co-worker would come and watch a game with her husband.......and it just gave her a lift to see that happen.
rebecca-lcsw (May 28, 2008 4:37:56 PM)
Dropping off a casserole or some groceries.....instead of calling and saying "can I do something".........just DO it!
DannyD (May 28, 2008 4:38:21 PM)
in the early stages doing things together like going out to eat or a movie
DannyD (May 28, 2008 4:39:43 PM)
in the later stages when it's difficult to get out then finding someone to give the caregiver a break is very important
scott (May 28, 2008 4:39:55 PM)
Rebecca, that's great advice - instead of asking if you can do something, just do it. too many people don't accept the offer and so they don't get the help they need.
rebecca-lcsw (May 28, 2008 4:40:02 PM)
Gift cards, a coupon for a massage or a pedicure........these days, a gas card would be a welcome gift for a caregiver.
DannyD (May 28, 2008 4:40:27 PM)
if the caregiver is not able to recharge the relationship becomes strained
rebecca-lcsw (May 28, 2008 4:40:34 PM)
I have found that caregivers are so wonderful AND modest -- they often say no, because it takes too much energy to think of something!!
scott (May 28, 2008 4:41:23 PM)
I have a follow-up question for DannyD...
rebecca-lcsw (May 28, 2008 4:41:37 PM)
Or the person with ALS isn't used to anyone else provding care -- so they say no.........it's important to be open to support.
ChatMaster (May 28, 2008 4:42:03 PM)
great!
scott (May 28, 2008 4:42:41 PM)
DannyD, if you don't mind sharing - could you give advice from a different angle... what about appreciation from the person with ALS to their caregiver? Do you have suggestions for people to show their spouse/child/in-law -whoever is caring for them - appreciation?
DannyD (May 28, 2008 4:43:45 PM)
I think Rebecca hit it when she said validation and verbal thanks
DannyD (May 28, 2008 4:44:09 PM)
also to be open to other ways off getting things done
scott (May 28, 2008 4:45:18 PM)
good point DannyD... allowing others to help you is a great way to show appreciation. The way your caregiver does it is not the only way it can be done
DannyD (May 28, 2008 4:45:28 PM)
you have to remember there is more than 1 way to accomplish a task and just because you wouldn't have done it that way doesn't make it wrong
DannyD (May 28, 2008 4:45:57 PM)
as long as the objective is met
scott (May 28, 2008 4:46:43 PM)
Thank you.
ChatMaster (May 28, 2008 4:47:26 PM)
Any more questions or comments? The chat will be coming to an end in 10 minutes
DannyD (May 28, 2008 4:47:29 PM)
also being open to other caregivers is a very big obstacle for many PALS
scott (May 28, 2008 4:48:13 PM)
EHoxworth, do you have another question?
rebecca-lcsw (May 28, 2008 4:48:19 PM)
DannyD, many folks have told us that if they were open early on........it was easier than if they got used to just one caregiver.
EHoxworth (May 28, 2008 4:48:44 PM)
i dont im just taking this all in and appreciating all this great info!
DannyD (May 28, 2008 4:49:01 PM)
People have an inherent need to feel like they make a contribution
ChatMaster (May 28, 2008 4:49:19 PM)
That is very true DannyD
ChatMaster (May 28, 2008 4:49:33 PM)
FYI... The ALS Caregiver’s Guide is currently available online at http://www.als-mda.org/publications/alscare/ALS-Caregivers-Guide.pdf. Hard copies can be requested through local MDA offices, and will be available in the coming weeks.
scott (May 28, 2008 4:49:47 PM)
DannyD, would you agree with what Rebecca said? - if you start early with multiple caregivers it would be easier than if you get used to just one from the start?
rebecca-lcsw (May 28, 2008 4:49:54 PM)
Great - I am so excited about this new edition.
EHoxworth (May 28, 2008 4:50:12 PM)
it looks fantastic and sooo new, i looked through it yesterday!
DannyD (May 28, 2008 4:50:21 PM)
if you don't allow someone to help you you've lost an opportunity for personal growth by the caregiver and the PALS
DannyD (May 28, 2008 4:50:58 PM)
Yes I would
EHoxworth (May 28, 2008 4:51:00 PM)
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ChatMaster (May 28, 2008 4:51:03 PM)
Also, MDA has 4 Living with ALS chat groups that meet weekly. Please see our chat calendar at www.mda.org/chat/calendar.html for a listing of MDA Chat groups.
ChatMaster (May 28, 2008 4:51:16 PM)
Transcripts of this chat will be posted at www.mda.org/chat/transcripts.html in the next week.
ChatMaster (May 28, 2008 4:51:37 PM)
The "The Family Dynamic" ALS expert chat is now coming to an end.
ChatMaster (May 28, 2008 4:51:47 PM)
Thank you Rebecca and DannyD. We look forward to having you again at an Experts chat.
rebecca-lcsw (May 28, 2008 4:51:55 PM)
Thank you for the opportunity.
scott (May 28, 2008 4:51:59 PM)
Thank you very much Rebecca and DannyD!
ChatMaster (May 28, 2008 4:52:09 PM)
Thank you all for your participation! Chatters can click on the Rooms tab and double-click on MDA Foyer if you want to keep chatting.
rebecca-lcsw (May 28, 2008 4:52:14 PM)
Take care DannyD; it was great to talk with you.
DannyD (May 28, 2008 4:52:46 PM)
I think it is the same as when an infant is exposed to multiple people that take care of them and meet their needs they tend to have less problems later like starting school
scott (May 28, 2008 4:53:12 PM)
good point DannyD...
scott (May 28, 2008 4:53:21 PM)
Thank you very much!
DannyD (May 28, 2008 4:53:32 PM)
my pleasure
ChatMaster (May 28, 2008 4:54:45 PM)
The "The Family Dynamic" ALS expert chat is now coming to an end. I am going to close the chat now. Goodbye!
scott (May 28, 2008 4:54:50 PM)
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rebecca-lcsw (May 28, 2008 4:54:52 PM)
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DannyD (May 28, 2008 4:54:57 PM)
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ChatMaster (May 28, 2008 4:55:00 PM)
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