How can I get help for my sister (58)?
Intractable Pain diagnosis -- My sister is an Ohio teacher who increasingly cannot commute or work. She’s been diagnosed with Intractable Pain, Rheumatoid Arthritis, Degenerative Disc Disease, Scoliosis, Ruptured Disc, Asthma, long-term depression, PTSD, anxiety (and more).
Her Primary doctor and Rheumatologist could not work her in during a long flare (week-long, pain level frequently 10 with micro-movements, no sleep). She is breaking down mentally (lives alone, 17-year -held job is 35 miles away one way).
On Sept. 8, I had to forcefully coach her to get to ER. ER admitted her to hospital under 24-hour observation status. ER did cranial, abdominal and pelvic CT scans, apparently useless. Her Morphine / Opiod drips increased pain to insane-screaming level. ER changed pain medications to include Percoset with other unknown pain meds, including a patch, which calmed pain to 7 level. She was discharged in the evening Sept. 9 with ER diagnosis of Intractable Pain and Morphine Intolerance. Discharge instructions are to return to work Sept. 14 but to see her Primary within 48 hours. Primary can’t work her in until Sept. 13. Her insurance covers the Percoset but not the other pain meds. She had to drive herself home in spite of warnings not to drive (hospital social worker could not help). She refused to let me call a taxi. She said driving was a fright and doesn’t remember getting home. She’s terrified.
She’s still not sleeping, reports pain level of 10 when she moves, she can’t lie down or move without excruciating pain. Her scoliosis image shows a severe lumbar bend rather than a curve. Her RA doc this past summer surmised “maybe you have broken your back.” She had a ruptured disc 9 years ago. She has thoughts of suicide and wishing to die. Also she has extremely low self esteem, and can’t seem to advocate for herself. I live 150 miles away, caring also for my husband and father. I’m not sure I can take on another custodianship. I’m not thinking too clearly, either. Her county’s aging services start at age 60, she’s only 58. Advice anyone?
This sounds terrifying and heartbreaking. I would not try to "take over" her care, but you should see if her employer has an "employee assistance program" which might be able to provide some case management services.
A pain management doctor likely has some more medication "tricks" up his/her sleeve. I'm told that some antidepressant meds are good in an ancillary way for pain relief, so don't let her discount that idea if the recommendation is made for her to take them, or to see a psychiatrist. There IS a mind/body connection.
If it's any consolation, you are doing something for your sister by being the person she can unload to, and that's not nothing. But it seems ridiculous that the social worker wasn't more help. Aging services may not kick in yet, but what about disability? Surely there is some kind of support network?
I support Babalou's and CM's advice. The only other things I can think of are:
1. If she's still working, and I'm not sure she can, find a paratransit or similar type transportation for her. The local public transit agencies might have the paratransit transit options. This would at least eliminate the trauma and danger of driving.
2. Ask her to sign HIPAA releases (even if you have to prepare them yourself, have her sign in front of a nonrelated witness), so you can speak with the doctors. I'm troubled that the RA doctor surmised she might have a broken back. Was that followed up? You could make calls to help and coordinate these kinds of issues to insure that she's getting more care.
3. I can't help the feeling that someone someplace isn't following through or that her care isn't being coordinated. Do either her employer or the teacher's union have care coordinators, such as a pre-geriatric coordinator?
4. Was any in-home care, either nursing and/or PT/OT ordered? If not, I would think it advisable. If you get HIPAA authority, I would ask one of her doctors about this, as well as about some 24/7 in-home care. That might also be a question for either her employer's HR department or the teacher's union.
5. How is the ruptured disc being treated, or isn't it?
6. Is she a veteran? What's the source of the PTSD?
7. It might be time for her to discuss medical employment and disability with her employer, and apply for disability and stay home.
I feel for you and your sister and wish I could think of something really helpful. She must be in agony.
I hope your days and weeks are better as you implement some of the suggestions. You and your sister have a lot to face; my heartfelt thoughts are with you.
50sChild, Just the fact that you are on the phone with her, staying in contact counts so much in her world, I am sure. Hoping she follows through on the appointments, maybe see a pain management specialist. The medical field in general throws patients under the bus when pain medication is suspected of overuse-damned if you do, damned if you don't sort of thing. See if the pain specialist agrees with the E.R. diagnosis. I do hope she gets the treatment she needs to function at her job. In agreement for disability and a later return to work date. Would she benefit from physical therapy? Ever tried it?
I hope they don't give up on her either. Second opinion?
Are you in touch with your local elected officials? Victims compensation fund?
How can her son, in good conscience, blame her for her health??? FAUGH!!!