Recently my mother (age 52) has been in and out of the hospital with severe dehydration due to increased output with her colostomy bag. She has an inflammatory bowel disorder and has had two previous surgeries. As of today, she is hospitalized and will most likely be released after 4 or 5 days, only to return within 2 days with the same issue.
She has been to the emergency department more than 25 times this year alone and to at least 4 hospitals. She has no other family besides her children and none live with her besides my 18-year-old brother who is the one who calls 911 every time she gets sick at 2 or 3 in the morning sometimes.
The only time she sleeps is when she is hospitalized because he has to constantly watch her. She suffers from depression so won't vocalize if she's in pain and when the ambulance is called she often refuses help until she is in too severe a condition and they have to be called again. I (25-year-old daughter) am a student who works full-time so I tried to get her a nurse through social services as she currently has Medicaid. I've tried 3 or 4 times and nothing has been set up yet, they simply state that they are working on it.
I've tried to call the hospitals many times to speak with her case managers or doctors and have been told that doctors do not speak on the phone with family members (which is understandable due to HIPAA) However, I am just looking for advice on how to get her into palliative care or a facility where she can be monitored because being at home is not safe for her as her symptoms are hard to manage and we are becoming overwhelmed with trying to care for her given her depression. She lives in a fairly rural area and is not able to drive, she also only wants to go to one hospital which is 3 hours away.
I've driven her there many times and they do really well with her care because they keep her until her output is consistent. She's usually there for at least a month. However, when her symptoms become hard to manage again, we are right back to the cycle of in-and-out of the local hospitals only keeping her for several days and often releasing her with only 25% kidney function and her output in the same state as when she arrived. I've tried to ask about transfers to the hospital 3 hours way for the administrative personnel to tell me, "It doesn't work like that." I am quite lost as to what to do and fear that she may never get better.
Welcome, JM.
Is mom's depression being treated?
Have you asked her to add you and your brother to her HIPAA paperwork?
It sounds as though your mom needs a state appointed guardian, i.e., be made a ward of the state, since she is unable to care for herself.
She needs consistent care in one location by a team of caregivers and doctors who can get to know her and properly manage her needs on a daily basis and get her stabilized, if possible. Only then can her doctor tell you if there's any hope of her ever getting better or if she's facing a terminal situation with her health.
If she's not able to care for herself, or be cared for by family at home, it seems to me she needs placement.
Best of luck to you.
They will then have to find the appropriate facility to place her in, and your brother can get his life back. It's not fair to him to have to look after your mother, when he has a life to live just like you're living yours.
So make sure you both stand your ground that your mother cannot return home as they will try to talk you into it and make all kinds of promises to help, which of course will never happen.
You have the perfect opportunity right now since she's hospitalized to get her placed, so PLEASE take advantage of that.
And oh make sure that your mother lists you and your brother on her HIPPA form so you both can speak to whoever you need to.