Joanne Posted November 25, 2012 Share Posted November 25, 2012 We brought him home a few weeks ago. He was doing well, and on the surface, didn't seem to need nursing home care. In addition, I could not afford to keep him there. His good days? He operates on the level of about a cognitively impaired 12 year old. His bad days? A cognitively impaired 3 year old. We still don't have direct access to the liver specialist (we won't have medicaid until June 2013). The liver doctor encouraged us to use the county hospital card (the card you all helped us get by helping us move). The Doctor trains the interns at the county hospital. Adrian was admitted to the hospital recently with an ammonia level of 300! :scared: He was admitted after that with a level less elevated, but his level of disorientation was high. I can't explain the more rapid and frequent declines in functioning. These are times when I know he is taking his medicine. I guess he must have been cycling like this at the nursing home. He has been aggressive and combative when not doing well. He forgets these episodes and is not in control of himself. I can't go back to the original nursing home; I will need to find another. But I can't afford to pay $1600 a month. We'd likely get that back on appeal, but I can't cash flow the time frame for the appeal. I'm thinking of calling Adult Protective Services myself. :confused: Remember the (highly contentious) article posted about the woman whose husband went into institutional care, she divorced, remarried, and part of the remarriage agreement was to take care of husband #1? I think I know what she must have felt. I don't want someone else, I am not looking to divorce. But it's odd when you are technically married to a different man. Profoundly different. I don't really have a marriage; I have another responsibility. Quote Link to comment Share on other sites More sharing options...
Lang Syne Boardie Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: I hope someone here has words of wisdom or advice that might help. I have neither, but I do care. Quote Link to comment Share on other sites More sharing options...
Jenny in Florida Posted November 25, 2012 Share Posted November 25, 2012 I'm sorry, Joanne. I cannot imagine how difficult this must be for you and your family. I hope you find a way to get some answers and some meaningful help very, very soon. Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
jelbe5 Posted November 25, 2012 Share Posted November 25, 2012 I am so sorry for you both. This is just so unfair. Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted November 25, 2012 Share Posted November 25, 2012 no advice but :grouphug: . I hope you find some answer SOON. Quote Link to comment Share on other sites More sharing options...
Zoo Keeper Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: I hope you find a solution that works for all of you soon. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
fraidycat Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Ailaena Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
fraidycat Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
hana Posted November 25, 2012 Share Posted November 25, 2012 I'm sorry, Joanne. Quote Link to comment Share on other sites More sharing options...
gingersmom Posted November 25, 2012 Share Posted November 25, 2012 I can semi-relate to what you are going through. My father had Parkinsons for nearly 30 years and the last 15 years were really rough on my mother and the family. There were years that when I showed to visit I never knew how lucid he was going to be (we did have to call 911 and take him to the emergency room one night when he was incoherent and out of control. Then there was the time we were trying to unsuccessfully get him back into bed and landed in a heap on the floor. We needed the 6'6 police officer to lift him, and he was barely able to do it). Are there any support groups you can attend? I know my mother went to one for a period of time. Is there anyone in real life who can relieve you for a few hours on the weekends? :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Lara in Colo Posted November 25, 2012 Share Posted November 25, 2012 I admire you on a level I cannot express. I hurt for you even more. Lara Quote Link to comment Share on other sites More sharing options...
Woodhaven Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: I'll give you a hug too, although I know it doesn't really help. I've also prayed for you that things will come together so that you can get him the help he needs and be able to afford it. How really, really hard. Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted November 25, 2012 Share Posted November 25, 2012 Joanne, I wish I could offer you more than prayers. It is so unfair that you have to shoulder these burdens. Quote Link to comment Share on other sites More sharing options...
Woodhaven Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: I'll give you a hug too, although I know it doesn't really help. I've also prayed for you that things will come together so that you can get him the help he needs and be able to afford it. How really, really hard. Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted November 25, 2012 Share Posted November 25, 2012 Joanne, I wish I could offer you more than prayers. It is so unfair that you have to shoulder these burdens. Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted November 25, 2012 Share Posted November 25, 2012 We still don't have direct access to the liver specialist (we won't have medicaid until June 2013). The liver doctor encouraged us to use the county hospital card (the card you all helped us get by helping us move). The Doctor trains the interns at the county hospital. Please do whatever he has suggested that you do. If there are liver interns being trained there, then his case is also being seen by the Dr.s who teach, train, and are often at the cutting edge of research. I met a liver transplant surgeon a few weeks ago who was saying that the advances in transplants in the past 15 years are absolutely astounding. It's not near the surgery it once was---shorter, less taxing on the patient, etc., etc. I'll pray that he gets on the transplant list and that until then his Dr.s figure out the best way to keep him as stable as possible. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mergath Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
freesia Posted November 25, 2012 Share Posted November 25, 2012 I admire you on a level I cannot express. I hurt for you even more. Lara Me, too. Quote Link to comment Share on other sites More sharing options...
SunnyDays Posted November 25, 2012 Share Posted November 25, 2012 Joanne, just sending you hugs. :grouphug: You've gone through so much... I hope you find a good solution for Adrian. It's a huge responsibility and I can only imagine how it wears on you. Thinking of you. Quote Link to comment Share on other sites More sharing options...
regentrude Posted November 25, 2012 Share Posted November 25, 2012 I have no advice and can just send you hugs and good thoughts :grouphug: Quote Link to comment Share on other sites More sharing options...
ashfern Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
elegantlion Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted November 25, 2012 Share Posted November 25, 2012 I admire you on a level I cannot express. I hurt for you even more. Lara :iagree: Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted November 25, 2012 Share Posted November 25, 2012 I admire you on a level I cannot express. I hurt for you even more. Lara :iagree: Quote Link to comment Share on other sites More sharing options...
Anne in CA Posted November 25, 2012 Share Posted November 25, 2012 So sorry. Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Scarlett Posted November 25, 2012 Share Posted November 25, 2012 We brought him home a few weeks ago. He was doing well, and on the surface, didn't seem to need nursing home care. In addition, I could not afford to keep him there. His good days? He operates on the level of about a cognitively impaired 12 year old. His bad days? A cognitively impaired 3 year old. We still don't have direct access to the liver specialist (we won't have medicaid until June 2013). The liver doctor encouraged us to use the county hospital card (the card you all helped us get by helping us move). The Doctor trains the interns at the county hospital. Adrian was admitted to the hospital recently with an ammonia level of 300! :scared: He was admitted after that with a level less elevated, but his level of disorientation was high. I can't explain the more rapid and frequent declines in functioning. These are times when I know he is taking his medicine. I guess he must have been cycling like this at the nursing home. He has been aggressive and combative when not doing well. He forgets these episodes and is not in control of himself. I can't go back to the original nursing home; I will need to find another. But I can't afford to pay $1600 a month. We'd likely get that back on appeal, but I can't cash flow the time frame for the appeal. I'm thinking of calling Adult Protective Services myself. :confused: Remember the (highly contentious) article posted about the woman whose husband went into institutional care, she divorced, remarried, and part of the remarriage agreement was to take care of husband #1? I think I know what she must have felt. I don't want someone else, I am not looking to divorce. But it's odd when you are technically married to a different man. Profoundly different. I don't really have a marriage; I have another responsibility. :grouphug: Quote Link to comment Share on other sites More sharing options...
Scarlett Posted November 25, 2012 Share Posted November 25, 2012 double post Quote Link to comment Share on other sites More sharing options...
Cinder Posted November 25, 2012 Share Posted November 25, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
prairiegirl Posted November 25, 2012 Share Posted November 25, 2012 Joanne, my heart is hurting so deeply for you right now. I am praying that somehow, somewhere, wisdom will come your way as to how to deal with this situation. Quote Link to comment Share on other sites More sharing options...
prairiegirl Posted November 25, 2012 Share Posted November 25, 2012 Joanne, my heart is hurting so deeply for you right now. I am praying that somehow, somewhere, wisdom will come your way as to how to deal with this situation. Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted November 25, 2012 Share Posted November 25, 2012 Hoping for an answer for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Impish Posted November 26, 2012 Share Posted November 26, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Corraleno Posted November 26, 2012 Share Posted November 26, 2012 I admire you on a level I cannot express. I hurt for you even more. This. Exactly this. :grouphug: Jackie Quote Link to comment Share on other sites More sharing options...
Elinor Everywhere Posted November 26, 2012 Share Posted November 26, 2012 :grouphug: :grouphug: :grouphug: I'm so sorry.... Quote Link to comment Share on other sites More sharing options...
GailV Posted November 26, 2012 Share Posted November 26, 2012 I'm so sorry. :grouphug: Quote Link to comment Share on other sites More sharing options...
catz Posted November 26, 2012 Share Posted November 26, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
mrbmom77 Posted November 26, 2012 Share Posted November 26, 2012 I'm so sorry. Praying for you. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted November 26, 2012 Share Posted November 26, 2012 I admire you on a level I cannot express. I hurt for you even more. Exactly. :grouphug: Quote Link to comment Share on other sites More sharing options...
tex-mex Posted November 26, 2012 Share Posted November 26, 2012 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Dandelion Posted November 26, 2012 Share Posted November 26, 2012 I'm so sorry. Sounds like a terribly difficult situation. :grouphug: Quote Link to comment Share on other sites More sharing options...
Starr Posted November 26, 2012 Share Posted November 26, 2012 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted November 26, 2012 Share Posted November 26, 2012 :grouphug: Still praying... Quote Link to comment Share on other sites More sharing options...
mama2cntrykids Posted November 26, 2012 Share Posted November 26, 2012 I am so, so sorry, Joanne. I wish I had some profound words. Hugs to you. Quote Link to comment Share on other sites More sharing options...
QueenCat Posted November 26, 2012 Share Posted November 26, 2012 :grouphug: Joanne :grouphug: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 26, 2012 Share Posted November 26, 2012 :grouphug: :grouphug: :grouphug: I'm so sorry, Joanne. It seems that every time you have something to be happy about (like your new job,) something else goes horribly wrong. I wish I had some words of wisdom for you, but I only have :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
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