Guest guest Posted April 2, 2007 Report Share Posted April 2, 2007 Dear Friends, On Saturday a memorial service was held for Joe in Austin, Texas. Many of Joe's friends and family members were there to say goodbye to Joe. It was a beautiful service I shall never forget. Yet, I cannot believe he is gone, and whenever the phone rings I expect it to be Joe! His 19 years of suffering with UC, PSC and CC are over forever. When will it be over for all who still have to suffer and experience the pain of IBD, PSC and CC? I pray for us all that more effective treatment and a cure arrive soon! My e-mail address is Chrisgrace@.... God Bless you all. Keep up the fight for a cure! Chris mother of Joe (33) UC 1987, J-pouch 1999, PSC 03/06, Acute pancreatitis 03/06, CC 12/06 Died 03/26/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Dear My heart goes out to your for the loss of your son. I cannot imagine how difficult this must be for you. I wish I could think of something to say that might ease your pain. As someone who has suffered from UC most of my life, and who now has a J-pouch, PSC and autoimmune hepatitis, I can tell you that even with these diseases, not all of life entails suffering. But yes, there is a lot of suffering with these diseases. And your son no longer suffers from his diseases. I'll admit there are moments when I think that will be a relief - when I no longer need to suffer. But watching someone you love suffer, and then die, is also unimaginably painful as well. I know about that as well. I lost my father to cancer in 2003, and now my mother is in a rapid decline from numerous illnesses. What is surprising is what is appearing to be the final straw. She has suffered from RA and has used prednisone for many years. She now suffers from 2 broken vertebrae (unbelievably painful), and seems to have lost the will to live. She also suffers from dementia. I suspect she will not know who I am within a few days. She barely eats, and she's refusing her medicines a lot of the time. Watching this decline I think is more painful than what I have suffered with my own diseases. I hope you will soon be able to concentrate on the good memories you have of your son - of happy times when you could laugh with him. But I understand that this may take some time. My thoughts are with you. -Marie >Dear Friends, > >On Saturday a memorial service was held for Joe in Austin, Texas. Many of >Joe's friends and family members were there to say goodbye to Joe. It was >a beautiful service I shall never forget. Yet, I cannot believe he is >gone, and whenever the phone rings I expect it to be Joe! His 19 years of >suffering with UC, PSC and CC are over forever. When will it be over for >all who still have to suffer and experience the pain of IBD, PSC and CC? > >I pray for us all that more effective treatment and a cure arrive soon! > >My e-mail address is Chrisgrace@.... > >God Bless you all. Keep up the fight for a cure! > >Chris >mother of Joe (33) >UC 1987, J-pouch 1999, PSC 03/06, Acute pancreatitis 03/06, CC 12/06 >Died 03/26/07 > > _________________________________________________________________ Download Messenger. Join the i’m Initiative. Help make a difference today. http://im.live.com/messenger/im/home/?source=TAGHM_APR07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 ....my mother is in a rapid decline from numerous illnesses....She now suffers from 2 broken vertebrae (unbelievably painful), and seems to have lost the will to live. She also suffers from dementia. I suspect she will not know who I am within a few days. She barely eats, and she's refusing her medicines a lot of the time. > Watching this decline I think is more painful than what I have suffered with my own diseases. > -Marie Marie - I hope I'm not being too intrusive, but as I read about your mom - her pain may be exacerbating her memory and appetite. Pain and also probably depression can make dementia much worse. With memory loss people cannot express their symptoms and often respond like your mom. At the very least - to really push doctors and nursing staff to give her adequate pain medicine (looking at her facial expressions, how she holds her body, etc for signs of pain - agitation or rapid breathing are often signs of pain). Constipation needs to be proactively treated when using narcotics - don't wait til she is constipated, as that can increase her back pain. And trying an antidepressant can help her quality of life - it might improve her appetite or general demeanor and antidepressants often can enhance the effects of pain medication. Pushing for comfort for your mom - pain relief and symptom management is OK for you to do - don't be shy! Yes, watching someone decline from dementia and from other chronic illness is very painful for family members. There is often comfort in knowing that you are trying to reduce pain and symptoms so that her day is the best that we can make it. Again, I apologize if I'm intruding! Joanne (, Ca; mom of , 16, UC/PSC 2-06; JRA 1998) Quote Link to comment Share on other sites More sharing options...
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