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multiple system atrophy

Posted by heartbroke @heartbroke, May 30, 2012

my wife has (msa) she requires 24/7 care. i am her care giver @ home.can anyone tell me how do i keep from falling apart. god it is so hard to watch the one u love go thru this.their is nothing i can do but watch.

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NormC | @normc | Jun 5, 2012

I am in a similar situation with my wife of 42 years. She was diagnosed with Parkinson's in 2004 and re-diagnosed with MSA in 2006. She managed fairly well until 2007 when I started intermittently with caregivers. In 2009 aspiration pneumonia sent her to the hospital three times. In November we decided to insert a G-tube for all medicines and food; that seemed to relieve the pneumonia problems, but by 2010 she developed more mucous than we could extract with a yaunker. In Dec 2010 I decided to have a trach inserted to allow me to extract the mucous at home using a catheter - since that time she has been fairly stable.
She has a strong faith (as do I) - we are both Christians which has clearly helped us maintain. She is cognitive, so she understands when we talk with her or she watches the television. I have managed to keep her at home in a hospital bed with caregivers eight hours a day, every day since 2009. She uses medical equipment 24/7 although we can take her outside, on short car rides, to doctors offices, etc. in her motorized wheelchair.
HOW I MAINTAIN - with caregivers here I can participate in several activities outside the house. Church, gardening, a local service club and a local gardening program keep me thinking about things other than caring for my wife all the time. Without these, I would be much more susceptible to breaking down. BOTTOM LINE - allow yourself free time and fill you time with activities you enjoy.
Hope this helps.

REPLY
2 replies
meaf0 | @meaf0 | Jun 5, 2012

There is a very strong on-line community on Facebook. The site established for caregivers is http://www.facebook.com/groups/168712409899563/. This site is extremely active and the caregivers share regularly.

REPLY
heartbroke | @heartbroke | Jul 29, 2012
In reply to @normc "I am in a similar situation with my wife of 42 years. She was diagnosed with..." + (show)
@normc

I am in a similar situation with my wife of 42 years. She was diagnosed with Parkinson's in 2004 and re-diagnosed with MSA in 2006. She managed fairly well until 2007 when I started intermittently with caregivers. In 2009 aspiration pneumonia sent her to the hospital three times. In November we decided to insert a G-tube for all medicines and food; that seemed to relieve the pneumonia problems, but by 2010 she developed more mucous than we could extract with a yaunker. In Dec 2010 I decided to have a trach inserted to allow me to extract the mucous at home using a catheter - since that time she has been fairly stable.
She has a strong faith (as do I) - we are both Christians which has clearly helped us maintain. She is cognitive, so she understands when we talk with her or she watches the television. I have managed to keep her at home in a hospital bed with caregivers eight hours a day, every day since 2009. She uses medical equipment 24/7 although we can take her outside, on short car rides, to doctors offices, etc. in her motorized wheelchair.
HOW I MAINTAIN - with caregivers here I can participate in several activities outside the house. Church, gardening, a local service club and a local gardening program keep me thinking about things other than caring for my wife all the time. Without these, I would be much more susceptible to breaking down. BOTTOM LINE - allow yourself free time and fill you time with activities you enjoy.
Hope this helps.

Jump to this post

hi norm i hope u still have your loved one me i lost her 6-1612 god called her home.the pain is so unbearable.theirs noting to say. i will pray for you and her.

REPLY
Caregiver | @caregiver | Nov 27, 2012
In reply to @normc "I am in a similar situation with my wife of 42 years. She was diagnosed with..." + (show)
@normc

I am in a similar situation with my wife of 42 years. She was diagnosed with Parkinson's in 2004 and re-diagnosed with MSA in 2006. She managed fairly well until 2007 when I started intermittently with caregivers. In 2009 aspiration pneumonia sent her to the hospital three times. In November we decided to insert a G-tube for all medicines and food; that seemed to relieve the pneumonia problems, but by 2010 she developed more mucous than we could extract with a yaunker. In Dec 2010 I decided to have a trach inserted to allow me to extract the mucous at home using a catheter - since that time she has been fairly stable.
She has a strong faith (as do I) - we are both Christians which has clearly helped us maintain. She is cognitive, so she understands when we talk with her or she watches the television. I have managed to keep her at home in a hospital bed with caregivers eight hours a day, every day since 2009. She uses medical equipment 24/7 although we can take her outside, on short car rides, to doctors offices, etc. in her motorized wheelchair.
HOW I MAINTAIN - with caregivers here I can participate in several activities outside the house. Church, gardening, a local service club and a local gardening program keep me thinking about things other than caring for my wife all the time. Without these, I would be much more susceptible to breaking down. BOTTOM LINE - allow yourself free time and fill you time with activities you enjoy.
Hope this helps.

Jump to this post

I posted for the first time today. My husband has MSA/Parkinson's (diagnosed 2009). Would love to know if you found anything(meds,tricks. etc.) that helps with the "freezing", the stiffness,the swelling in the legs, Any advice would be appreciated.

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