My Brother has MS

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flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 7/9/2010 11:59 AM (GMT -7)   
I  saposse this is mostly just a vent....thanks in advance for reading.  My brother has MS. He is 41 years old and was dx with MS at 24. He was totally wheelchair bound at 35ish and now has home healthcare daily 4-5 hours. He wears a bracelett that he can call 911 for assitance if he has too.  He is divorced with 2 children. Does not have custody. But, to really top it off both of my parents have died so that doesn't leave much family support. I moved away from him 6 and half years ago because my husband had a job move. It was a hard decision to make but we had to put food on the table. Now, living 14 hours away from him... it is heart breaking. He is a Veteran so when we moved I moved close to a Vet Hospital assuming down the road he would join us. He goes in and out of the hospital/nursing home...back and forth...yada yada. His quality of life is just getting so bad! If he moved closer to me... he would not see his children...hardly at all and I feel this plays a big factor in him moving...and he's just scared of the change.
I guess with MY health situation (Crohns, Fibro, Diabetes, Depression).....I'm not a really good canidate to have him "live" in with me.
Matter of fact... he is a big man..and I could never lift him. His memory comes and goes.  I think MS is starting to effect him neurologically.  He is very stubborn and insist on living on his own as long as possible. How does a person go about getting someone in a nursing home who doesn't want to go? I would hate to go against him..but I feel for his saftey we may be at the point. Nursing homes are so sad though. Most of the people are older and he feels out of place. Right now he is getting 100 percent disability coverage through the service. For that I am thankful! If he did go to a Vet hospital...I fear they would take it all and he likes being able to give to his children.
Anyway...thanks for reading. Always feels good to get somethings out:)
Flowery
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!
 
 
               
                        


crohnniedoe
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 7/9/2010 12:19 PM (GMT -7)   
Dear flowery,
 
I feel your pain, although, not completely.  My sister was diagnosed with MS when she was about 27.   She is young 40's now, not WC bound and has custody of her 2 children one who is going off to college this next fall. the other is 11?  If your brother has home health care, they will identify when he is too much to care for in the home.  You could always call and see if they can have him approved for more hours, there's a lot of help out there to get approval for more hours.  The key to home health care, and I know this because I am a home health nurse for the last 16 years, is to keep people out of NH as long as possible.   There could be many reasons for a change in mental status.  He could have a urinary tract infection.  Does he have a catheter, or is he catheterized throughout the day.  Let him know that you are sensing a change in his mental state and urge him to be tested for a "UTI" urinary tract infection.  Just because you are so many miles away doesn't mean you cant be involved in his care.  Ask his permission to be in touch with his home health care staff and you can be effective in his care and direction of his care, and the people who are actually hands on with your brother can put a lot of your fears to rest.  I'm sure his love of his kids are the reason he won't move.  My sisteris the same way.  even though we all grew up in ny on long island most  of us arehere in ohio.  she and my brother are the only 2 left in NY and he doesn't help her at all.  We've been after her for years to move to Ohio, but she won't.  Try to be there for him in ways you can, it will make you feel less stressed and effect your disease less, I have Crohns, was diagnosed 2 years ago.  Hopefully he will Ok you to be involved.....let him know it will help with your disease process.  I hope everything works out for you and your brother.  There's nothing worse than watching someone you love lose the capacity to take care of themselves.  Sometimes I get feeling sorry for myself, and then Iremember what my sister goes through on a daily basis and the positive attitude she has all the time.  Good luck and stay positive.  God has given us these crosses to bear for some reason, and if we can all help each other with them, it make that burden that much easier.  <3 to all
Chronniemoe

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/9/2010 2:47 PM (GMT -7)   
No advice or insights, Flowery, just huge hugs for you and your brother as you make these hard decisions.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 7/9/2010 6:43 PM (GMT -7)   
Thank-you Crohniedoe. You found words for somethings that I just have a hard time explaining. I've never been very good at putting my feelings into words. Your right, I do the same thing when I have a bad day....I picture him and what he has to go through just making it to the bathroom!! I quickly stop feeling sorry for myself in a hurry. For the most part he is in pretty good spirits. I heard or read somewhere that MS has a Euphoric side effect. Idk?
I didn't realize that I could take part in his home healthcare. He has been very hush hush about his home healthcare probably because he doesn't want to go to a NH. Would I just call the place? or go through a social worker?
Ivy6-thanks for the Hug:) and spending the time to read our issues!
Flowery
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!
 
 
               
                        

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