He saw the cardiologist (no change), ENT (no change), neurologist (f/u 1/26), psychiatrist (f/u 1/6), and neuropsych re-test (1/2, receiving results 1/8). New/good behaviors - he's been able to read a book, laugh, stay lucid/awake for several hours, assist with doorbell/dryer fixes at Mom's; New/bad behaviors - he's has some hypomania (spent cash on lotto instead of Christmas, paranoia, irritability & sudden anger, etc.) and still sleeps/zones out more than anything else.
We applied for short-term disability earlier this week, waiting for the claim to be assigned. Results of the neuro-psych testing: he can't drive until cleared by the neurologist, but no early dementia! All cognitive issues are consistent with bipolar disorder, so if he stabilizes on meds, his level of functioning should improve! Praise God! We're monitoring his blood level of the new meds, and as of last night, we're still stabilizing on the December changes.
At the neurologist Monday, they said no driving until he gets stabilized and past the coughing-til-passing-out issue (cough syncope). He simply has to face his situation, look toward the future (one step at a time), and work on recovery. Nobody can do this FOR him, and ignoring it only brings additional challenges. He's aching over the loss of independence, embarrassed about his limitations, and very upset that I started this blog asking for help and compromising HIS privacy. Anyway, his PCP referred him to a pulmonologist and the next steps with the cardiologist to get the cough syncope under control. We're also doing more med changes.
Latest meds appear to have really improved blood pressure! Pulmonologist started him on Advair Tuesday, and cardiologist is having him wear a device to capture data on the syncope episodes for 30 days. I'm also supposed to have a blood pressure cuff handy to get a reading immediately after he passes out - Big drop means he may benefit from a pacemaker.
Advair has really helped with the syncope episodes - only 2 in the past week! So far, the heart monitor has recorded several times, but hasn't actually captured a notable cardiac event yet. Today we have the Gastroenterologist, since we're concerned about passing blood recently.
Short-term disability is now approved through 4/1, and we're in "phase II" of these psychotropic med changes. This week, some aggression may come through.
Dermatologist said the med he's on MUST be swallowed with a full glass of water due to the high acid - This would be a big change (Interesting that the cough syncope got worse when he started this med). Today, we did the swallow test & follow-up with PCP, who ordered a liver ultrasound & another med change.
We had major improvements with his behavior & attitude around the weekend in Luck (2/14). Since then, things have worsened again. He's back to laying around or sleeping when he's not at appointments, and seems to be unable to follow things like conversations or directions.
Asked the psychiatrist if we could admit him as an inpatient yesterday, but he said insurance wouldn't pay unless he hurts himself (or the kids or me); Dr. called in another prescription - this pill alone is $150!
Raj went back into the hospital yesterday; He's simply beyond my abilities to care for; Hoping for inpatient experience to get some kind of motivation going.
I'll bring Raj home tomorrow, but in phone conversations, his attitude hasn't changed. At least the kids and I had a few days of respite with him away.
He was pretty cruel when I dropped him off for his colonoscopy this morning, continuing to twist things around & blame me for not making him feel better.
Today's result: ulcerative proctitis, a type of ulcerative colitis. He's currently resting, somewhat relieved to know he can be treated, now that there's a diagnosis for this issue.
Vacation travel with Raj was really hard; I won't be able to handle that again. His cognitive decline continued throughout our trip - difficulty with interactions, keeping track of things, irritability, shaking. On the bright side, his colitis symptoms are lessening with the prescription he's using, and he didn't pass out from coughing (syncope) while on vacation.
His cough syncope has been worse lately. Besides the "depression couch" where Raj spends most of his time, the stench of his long-term poor hygiene now fills the house, furniture, cars, clothes, . . . We can't seem to escape the smell, and people outside our home are noticing it.
Admitted to St. Alexius today, due to cough syncope 10-20 times a day. His cognitive decline also continues, which makes day-to-day care for him extremely difficult.
Transfer from hospital back to Assisted Living facility yesterday; Continuing on blood-thinner & source of infection still unknown, but swelling & pain is down.
Working with Home Health & UHC Case Mgr to transition Raj from Assisted Living to home. Yesterday's additional diagnosis is sleep apnea, so need a CPAP for him to wear at night. He's admitted to 8 fainting episodes in the past few weeks, but insists he won't fall at home.
Raj got the CPAP to treat sleep apnea yesterday, and the Case Mgr/doctors finally met regarding Raj's transition home. They've decided that now is NOT the right time. He really needs to get the cough syncope under control, or he'll end up back in the hospital (just like all the other times). He is very disappointed.
OK, we've finally seen some progress: Raj started managing his own meds mid-Sept, and it's working! He seems more alert during the daytime, and he's back on the inhaler which helps with coughing. Today at Sunrise, his care level dropped to "unassisted" living, which is his first real step toward a transition home.
Things are regularly stolen from Raj's room at Sunrise, and all his providers agree that he should only have a small amount of cash there . . . Today, I got a call from Capital One Fraud, since Raj grabbed a Visa on one of his recent trips home & decided to go shopping! My trust in him is shattered AGAIN.
Starting him with a new therapist today. As far as I can tell, all he's using his alertness for is creating/maintaining lies. He's only admitting to the ones where he gets caught. If this provider can't provide an environment of accountability, we're out of options.
Raj used my time away this weekend for a surprise trip home several hours Sunday, where Mom and Julie did their best to keep track of him (Ruth was with a friend). So far, he's admitted to resetting our Skype account password, using my email account, and playing around with the set-up; He set up a "job" for the next 6 months & got paid in advance for the work, but doesn't have a plan yet on how it will be done. When I asked him about these things, as I figured them out, he reacted badly and made threats about coming home permanently without regard to his doctors or anyone's safety.
We're into several med changes to counteract Raj's impulsive behavior, as well as working with the new therapist; Blood pressure hasn't improved through various med changes, losing 20 lbs, etc. so continuing to tweak; Continuing to change passwords, back out purchases, etc. as I discover them; I'm taking him to/from his "job" on top of everything else.
OK Jill. It's been three weeks. What's up with you hubby? Are the new meds an improvement? DG
ReplyDeleteHe saw the cardiologist (no change), ENT (no change), neurologist (f/u 1/26), psychiatrist (f/u 1/6), and neuropsych re-test (1/2, receiving results 1/8). New/good behaviors - he's been able to read a book, laugh, stay lucid/awake for several hours, assist with doorbell/dryer fixes at Mom's; New/bad behaviors - he's has some hypomania (spent cash on lotto instead of Christmas, paranoia, irritability & sudden anger, etc.) and still sleeps/zones out more than anything else.
ReplyDeleteWe applied for short-term disability earlier this week, waiting for the claim to be assigned. Results of the neuro-psych testing: he can't drive until cleared by the neurologist, but no early dementia! All cognitive issues are consistent with bipolar disorder, so if he stabilizes on meds, his level of functioning should improve! Praise God! We're monitoring his blood level of the new meds, and as of last night, we're still stabilizing on the December changes.
ReplyDeleteShort-term disability has been approved.
ReplyDeleteAt the neurologist Monday, they said no driving until he gets stabilized and past the coughing-til-passing-out issue (cough syncope). He simply has to face his situation, look toward the future (one step at a time), and work on recovery. Nobody can do this FOR him, and ignoring it only brings additional challenges. He's aching over the loss of independence, embarrassed about his limitations, and very upset that I started this blog asking for help and compromising HIS privacy. Anyway, his PCP referred him to a pulmonologist and the next steps with the cardiologist to get the cough syncope under control. We're also doing more med changes.
ReplyDeleteLatest meds appear to have really improved blood pressure! Pulmonologist started him on Advair Tuesday, and cardiologist is having him wear a device to capture data on the syncope episodes for 30 days. I'm also supposed to have a blood pressure cuff handy to get a reading immediately after he passes out - Big drop means he may benefit from a pacemaker.
ReplyDeleteAdvair has really helped with the syncope episodes - only 2 in the past week! So far, the heart monitor has recorded several times, but hasn't actually captured a notable cardiac event yet. Today we have the Gastroenterologist, since we're concerned about passing blood recently.
ReplyDeleteShort-term disability is now approved through 4/1, and we're in "phase II" of these psychotropic med changes. This week, some aggression may come through.
ReplyDeleteGastroenterologist has recommended a test to capture images while swallowing; Then after the 30-day cardiologist's test, a colonoscopy.
ReplyDeleteDermatologist said the med he's on MUST be swallowed with a full glass of water due to the high acid - This would be a big change (Interesting that the cough syncope got worse when he started this med). Today, we did the swallow test & follow-up with PCP, who ordered a liver ultrasound & another med change.
ReplyDeleteWe had major improvements with his behavior & attitude around the weekend in Luck (2/14). Since then, things have worsened again. He's back to laying around or sleeping when he's not at appointments, and seems to be unable to follow things like conversations or directions.
ReplyDeleteAsked the psychiatrist if we could admit him as an inpatient yesterday, but he said insurance wouldn't pay unless he hurts himself (or the kids or me); Dr. called in another prescription - this pill alone is $150!
ReplyDeleteHe was hypo-manic most of today; Just crashed on the couch.
ReplyDeleteBased on yesterday's med management appointment, changing 2 dosages in the next few days (and the Dr. gave us samples of the really expensive stuff!)
ReplyDeleteMed changes (for now) are done, but he's still refusing to really start working on getting better. I don't know how much more of this I can take.
ReplyDeleteWe're applying for long-term disability now, and Raj has additional (worse) physical/mental problems, including difficulty with self-care.
ReplyDeleteRaj went back into the hospital yesterday; He's simply beyond my abilities to care for; Hoping for inpatient experience to get some kind of motivation going.
ReplyDeleteI'll bring Raj home tomorrow, but in phone conversations, his attitude hasn't changed. At least the kids and I had a few days of respite with him away.
ReplyDeleteBrought Raj home from the hospital today, and he did a few things, then directly back to the couch to sleep.
ReplyDeleteIt's pretty clear Raj isn't willing to work on getting better. It's also not safe to leave him unattended for very long.
ReplyDeleteHe was pretty cruel when I dropped him off for his colonoscopy this morning, continuing to twist things around & blame me for not making him feel better.
ReplyDeleteToday's result: ulcerative proctitis, a type of ulcerative colitis. He's currently resting, somewhat relieved to know he can be treated, now that there's a diagnosis for this issue.
ReplyDeleteVacation travel with Raj was really hard; I won't be able to handle that again. His cognitive decline continued throughout our trip - difficulty with interactions, keeping track of things, irritability, shaking. On the bright side, his colitis symptoms are lessening with the prescription he's using, and he didn't pass out from coughing (syncope) while on vacation.
ReplyDeleteAdditional diagnosis from the Gastroenterologist - a protozoan infection, so started him on a course of antibiotics for that.
ReplyDeleteHis cough syncope has been worse lately. Besides the "depression couch" where Raj spends most of his time, the stench of his long-term poor hygiene now fills the house, furniture, cars, clothes, . . . We can't seem to escape the smell, and people outside our home are noticing it.
ReplyDeleteAdmitted to St. Alexius today, due to cough syncope 10-20 times a day. His cognitive decline also continues, which makes day-to-day care for him extremely difficult.
ReplyDeleteHome Friday night, then admitted by ambulance again yesterday, due to cough syncope & injury on a fall.
ReplyDeleteDischarged from hospital to assisted living facility today for a 2-week "respite" stay.
ReplyDeleteAdmitted via ER again last night - possible infection from the pacemaker placement.
ReplyDeleteBlood clot in left arm being treated with blood-thinner; Infection still undetermined.
ReplyDeleteTransfer from hospital back to Assisted Living facility yesterday; Continuing on blood-thinner & source of infection still unknown, but swelling & pain is down.
ReplyDeleteExtended at Assisted Living facility for another 2-3 weeks; Still on blood-thinner, but infection appears to be gone.
ReplyDeleteDiagnosed with scabies today; Doing the treatment tonight - Thank God for that nurse!
ReplyDeleteBesides the scabies, we need a dermatologist to look at another skin problem.
ReplyDeleteWorking with Home Health & UHC Case Mgr to transition Raj from Assisted Living to home. Yesterday's additional diagnosis is sleep apnea, so need a CPAP for him to wear at night. He's admitted to 8 fainting episodes in the past few weeks, but insists he won't fall at home.
ReplyDeleteDermatologist's additional diagnoses yesterday - ear dandruff & several infected hair folicles, so started on 3 new prescriptions for those.
ReplyDeleteRaj got the CPAP to treat sleep apnea yesterday, and the Case Mgr/doctors finally met regarding Raj's transition home. They've decided that now is NOT the right time. He really needs to get the cough syncope under control, or he'll end up back in the hospital (just like all the other times). He is very disappointed.
ReplyDeleteOK, we've finally seen some progress: Raj started managing his own meds mid-Sept, and it's working! He seems more alert during the daytime, and he's back on the inhaler which helps with coughing. Today at Sunrise, his care level dropped to "unassisted" living, which is his first real step toward a transition home.
ReplyDeleteThings are regularly stolen from Raj's room at Sunrise, and all his providers agree that he should only have a small amount of cash there . . . Today, I got a call from Capital One Fraud, since Raj grabbed a Visa on one of his recent trips home & decided to go shopping! My trust in him is shattered AGAIN.
ReplyDeleteStarting him with a new therapist today. As far as I can tell, all he's using his alertness for is creating/maintaining lies. He's only admitting to the ones where he gets caught. If this provider can't provide an environment of accountability, we're out of options.
ReplyDeleteRaj used my time away this weekend for a surprise trip home several hours Sunday, where Mom and Julie did their best to keep track of him (Ruth was with a friend). So far, he's admitted to resetting our Skype account password, using my email account, and playing around with the set-up; He set up a "job" for the next 6 months & got paid in advance for the work, but doesn't have a plan yet on how it will be done. When I asked him about these things, as I figured them out, he reacted badly and made threats about coming home permanently without regard to his doctors or anyone's safety.
ReplyDeleteWe're into several med changes to counteract Raj's impulsive behavior, as well as working with the new therapist; Blood pressure hasn't improved through various med changes, losing 20 lbs, etc. so continuing to tweak; Continuing to change passwords, back out purchases, etc. as I discover them; I'm taking him to/from his "job" on top of everything else.
ReplyDelete