Caregiver Support

Send suggestions to the UBPN or find answers to your questions about the boards.
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chimley
Posts: 40
Joined: Tue Sep 09, 2008 1:40 pm
Injury Description, Date, extent, surgical intervention etc: I am the wife of Rick, LTBPI. On 6/30/2008, our lives were forever changed. Rick was in a severe auto accident and sustained multiple injuries: broken jaw and facial bones, mild traumatic brain injury, L1 fracture, 4th cranial nerve palsy and LTBPI. With regard to the LTBPI, Rick has had an ulner nerve transfer (January 2009). We are now considering next steps in his treatment, perhaps some muscle transfers. Pain continues to be the worst thing about his injury. We are told that the pain goes away within five years or people have learned to deal with it. Meanwhile, we pray....and wait.
Location: Michigan

Caregiver Support

Post by chimley » Fri Jan 23, 2009 8:07 pm

Hello,

I'm wondering which board might be the best one to go for support as a caregiver for someone w/TBPI. Or, have you considered setting up another one to focus on the caregivers?

I love all the info you provide here and the perspectives of those who have been injured, but sometimes I feel so helpless as Rick's caregiver and wonder if there are others who feel the same....

Thanks! Kim

Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Caregiver Support

Post by Carolyn J » Sat Jan 24, 2009 4:43 pm

I would suggest posting your fellings and experiences on all message boards;sometimes parents just go to the General Board because that's al the have time for. Yes, yes, Moms & Dads have posted about their weariness and vent on these Boards and do recieve alot of support,encouragement to take care of yourself some of the time; & Courage and strength to go and just have a massage and/or Pedicure just for you as well as other strategies of how to take care of you 1st.

Carolyn J
LOBPI adult
Carolyn J
Adult LOBPI

chimley
Posts: 40
Joined: Tue Sep 09, 2008 1:40 pm
Injury Description, Date, extent, surgical intervention etc: I am the wife of Rick, LTBPI. On 6/30/2008, our lives were forever changed. Rick was in a severe auto accident and sustained multiple injuries: broken jaw and facial bones, mild traumatic brain injury, L1 fracture, 4th cranial nerve palsy and LTBPI. With regard to the LTBPI, Rick has had an ulner nerve transfer (January 2009). We are now considering next steps in his treatment, perhaps some muscle transfers. Pain continues to be the worst thing about his injury. We are told that the pain goes away within five years or people have learned to deal with it. Meanwhile, we pray....and wait.
Location: Michigan

Re: Caregiver Support

Post by chimley » Sat Jan 24, 2009 10:00 pm

Carolyn,

Thanks for your reply. I will also check out the general board more often. It seems most people are parents of BPI children on the general board, however, in our situation, Rick is my husband.

With two children, 10 and 14, and a full time job, as well as caring for all of Rick's needs since his accident, I am learning that I need to learn to care for myself first. A massage sounds so heavenly right now. I picked up a card for my chiropractor's massage therapist. I think I may schedule an appointment!

Thank you!
Kim
Wife of LTBPI

bensmom
Posts: 92
Joined: Sun Sep 09, 2007 7:54 am

Re: Caregiver Support

Post by bensmom » Mon Jan 26, 2009 10:10 pm

Kim-
I was just stopping in here to post the same suggestions, you beat me to it! I'm noticing more and more spouses of TBPI adults participating in the board, at least it feels that way to me, but I've only been around for a year and a half. Anyway, I remember how overwhelming it was at the beginning when my husband was injured, and how I just felt like I needed to cry to someone who actually understood, even a "cyber cry" would have been a relief.

Just my 2 cent!
Amanda

Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Caregiver Support

Post by Carolyn J » Wed Jan 28, 2009 12:57 pm

GOOD for both of you Kim & Amanda!
Spouses have alot in comon with Moms too because we all forget to put ourselves on the list...Aduts "withOBPI's too.
Taking care of ourselves 1st is so necesary because we cannot give what we don't have & when your tank is on empty everyone around you feels your stres like a sponge..

Massages & Pedicures ROCK!!
HUGS all around,
Carolyn J
LOBPI/70

ps...I learned too late, you "young'uns" take care now,
Ya' hear! ;)
Carolyn J
Adult LOBPI

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