Hello all,
I don't know if this is my first post or not.... I've been reading here off and on since my dad was diagnosed 10/07. Thank God for a community like this and for this technology. This disease is SO lonely for those dealing with it...people just can't understand (thankfully for them!) and some shy away b/c they are uncomfortable. (VENT: his two brothers who he had been somewhat distanced from but had reconnected with prior to diagnosis have all but disappeared since he became ill....WHAT the HELL?)
Our story is that my dad was diagnosed 10/07, has slowly (?) progressed to the point he's at now and I really need to hear from people who've been through this whole process already. We are just clueless about what's to come and I would really like details even if we don't know 'exactly' the path my dad will go.
He's bedbound but can use his arms/hands somewhat, he can talk but it's getting worse, he can swallow but as of two days ago he's started to have 'increased secretions'.
My questions: What are these secretions from? It's saliva but is it b/c he can't swallow? How then can he swallow the liquids he's drinking? He continues to drink. He takes lithium, for depression mainly, and that makes him very thirsty. My mom has said that it's getting scary b/c of the secretions and his cough is barely non-exsistant. He has a strong gag and we're afraid to use the suction that he'll aspirate. He won't let her suction anyway. He's so so miserable, depressed, nasty and I can't blame him but it makes it so hard for my mom, his primary caregiver. What's next? The meds they gave him for the secretions are from the 'comfort kit' (he's in hospice care)....Does this mean anything significant or is this just part of the deal and we'll go on and on from here? What can we expect? Or is this still impossible to answer? Maybe, if anyone has been through this, what was next *in your case*?
I'm going to start a new post about bipap just to keep things separate...there's just so much going on and I'm struggling to deal...I have two small kids and wish I could do more but dad won't allow me to do anything beyond a tube feeding or pouring a drink.... My mom's been burnt out but mainly b/c of his 'personality'...he is *difficult* beyond words...There are those that tackle this with grace and dignity and then there's my dad! Love him but it's just SO him to be like this.... none of us is surprised! Please don't see this as badmouthing my dad or coming down on a PALS...I promise I'm not! I have so much stress for him and his mental suffering...I just wish there were something that could help ease his mind, calm him, alleviate ALL the anxiety he's lived with since diagnosis........
Wow, long long post....and all over the map! thanks for hearing me and for anything you can offer!
~Susan
I don't know if this is my first post or not.... I've been reading here off and on since my dad was diagnosed 10/07. Thank God for a community like this and for this technology. This disease is SO lonely for those dealing with it...people just can't understand (thankfully for them!) and some shy away b/c they are uncomfortable. (VENT: his two brothers who he had been somewhat distanced from but had reconnected with prior to diagnosis have all but disappeared since he became ill....WHAT the HELL?)
Our story is that my dad was diagnosed 10/07, has slowly (?) progressed to the point he's at now and I really need to hear from people who've been through this whole process already. We are just clueless about what's to come and I would really like details even if we don't know 'exactly' the path my dad will go.
He's bedbound but can use his arms/hands somewhat, he can talk but it's getting worse, he can swallow but as of two days ago he's started to have 'increased secretions'.
My questions: What are these secretions from? It's saliva but is it b/c he can't swallow? How then can he swallow the liquids he's drinking? He continues to drink. He takes lithium, for depression mainly, and that makes him very thirsty. My mom has said that it's getting scary b/c of the secretions and his cough is barely non-exsistant. He has a strong gag and we're afraid to use the suction that he'll aspirate. He won't let her suction anyway. He's so so miserable, depressed, nasty and I can't blame him but it makes it so hard for my mom, his primary caregiver. What's next? The meds they gave him for the secretions are from the 'comfort kit' (he's in hospice care)....Does this mean anything significant or is this just part of the deal and we'll go on and on from here? What can we expect? Or is this still impossible to answer? Maybe, if anyone has been through this, what was next *in your case*?
I'm going to start a new post about bipap just to keep things separate...there's just so much going on and I'm struggling to deal...I have two small kids and wish I could do more but dad won't allow me to do anything beyond a tube feeding or pouring a drink.... My mom's been burnt out but mainly b/c of his 'personality'...he is *difficult* beyond words...There are those that tackle this with grace and dignity and then there's my dad! Love him but it's just SO him to be like this.... none of us is surprised! Please don't see this as badmouthing my dad or coming down on a PALS...I promise I'm not! I have so much stress for him and his mental suffering...I just wish there were something that could help ease his mind, calm him, alleviate ALL the anxiety he's lived with since diagnosis........
Wow, long long post....and all over the map! thanks for hearing me and for anything you can offer!
~Susan
