Youngish Mom is in the ICU long-term - What Can Her Far-Away Daughter Do? If this is the wrong place to ask this question and someone knows a better place, please let me know. I've been fortunate so far to not have to deal with my own parents' care as they are still quite independent, but it leaves me ignorant of how to advise someone. My future daughter-in-law, who I'll call DIL, is 23 and lives with me, 2200 miles from her single mom's home. Mom is only 57 and has been in the ICU due to intestinal trauma since January (over two months now) 180 miles from her home. DIL and Son have been living near the hospital where Mom is for the past four weeks in a furnished house I rented for a month for them. The month is nearly up, and finances are tight, but I could probably manage to support them for another few weeks (but house is no longer available as of a few days from now). Another problem is that DIL a) has her own medical issues and wants to come home to my house and b) is extremely reluctant to accept further financial assistance. Doctors at the hospital (where Mom was airlifted, hence being 180 miles from home) refuse to provide a date they expect to release Mom to rehab--they have provided estimates in the past and her condition worsened, so they're just not estimating anymore. DIL does not have power of attorney. She first didn't want to upset Mom, and then Mom was sedated and couldn't give consent. When Mom woke up last week, she was too weak to make a mark that the FIVE witnesses would accept on the POA forms. So DIL and Son are apparently coming home in a few days, against my advice to stay. I am frantic for Mom--what can be done in 3-4 days to better-ensure she gets the care she needs? What can DIL demand of hospital staff in terms of reporting (DIL is the one who has been authorizing the 18 surgeries Mom has had so far in this hospital alone, so she has some sort of authority, but isn't clear on exactly what it is)? Is having Mom transferred 2200 miles to the excellent hospitals near our home remotely possible? Currently she has her own insurance (we think through work--where she hasn't been in 2.5 months), but I'm not sure how long that will last before she has to apply for social security or medicare. A "friend" (non-romantic) has been taking care of Mom's bills, but again, we're not sure how long that will last, and Friend is not especially forthcoming with information. Friend has only visited Mom once in two months and possibly has a vested interest in her ultimate demise. I thought I had this adulting thing almost figured out, but this dramatic situation has really put me in my place in that regard! Any advice is welcome.
Mom may not be able to survive further surgery especially as she coded twice the other night.
You could ask if is possible to do further surgery and remove any diseased intestine and if necessary give her a colostomy. They may be able to join two pieces of healthy intestine together or possibly remove the colostomy at a later time. DIL is correct in wanting more aggressive treatment. She may die anyway but she is young enough to be able to survive.
There is a school of thought these days that acute appendicitis can be treated with antibiotics rather than immediate surgery. I guess this is possible but didn't work for me. The local hospital refused to operate because their cardiologist was on vacation and transferred me to a teaching hospital where they left me overnight. By the next morning I too had septicemia and needed emergency surgery. Went OK but IV fluids put me into heart failure and a clot in my heart which took 9 months to reabsorb.
This Mom is in desperate condition. What are they doing about nutrition. Is she getting TPN (total parental nutrition). This entails putting a tube into a large blood vessel into her chest wall, then they give a special high nutrition IV. She is beyond regular IVs except for hydration and administering medications. This is going to be a very long journey if she survives. I certainly would not be in a hurry to move her to rehab as she probably needs a high level of care for some time.
I would confirm that mom's health insurance is still active and continues that way.
The hospital is a level one trauma center associated with a medical school, so you'd think that the care would be excellent. But communication has been awful--they promise to call and then don't. When DIL calls, she gets brushed off or worse, basically told that they don't have time for her (she has a very high but soft voice and sounds like she's 12--this may have something to do with it, in my opinion). From the medical records, DIL learned that in early February, Mom had a blood clot that the staff never told DIL about. A couple times they called Friend for authorization for surgery, even though DIL is the only one permitted to give authorization, and only her name and number are on the whiteboard Mom's room. In terms of being able to handle her trauma, this week they said they were going to take a "wait and see if more intestine dies" approach to the fecal matter oozing out of *around* her abdominal drains rather than open her up again and wash her out--DIL would like to see a more aggressive approach, as it was the "wait and see" approach at the previous more rural hospital that ended up getting her airlifted in the middle of the night to this hospital with septicemia and several feet of necrotic intestine. Sorry for the goriness!
Having Mom brought close to you seems like a good solution, but it doesn't sound like traveling that distance is in Mom's immediate future. That is something they could talk to the social worker about. Maybe by the time she is ready for rehab she could travel.
I cannot imagine being in ICU for more than 2 MONTHS!! I had ICU psychosis being there 3 days.
My mother never appointed anyone as POA, and no one had guardianship. The four of us daughters never had any problem handling her affairs. Our mom did not have financial assets, and that might make a difference. But I don't see that getting POA is a big emergency at this time. DIL is being asked by the hospital to make decisions (as we were for our mother, as next of kin). As long as Mom is in ICU DIL probably has sufficient authority to handle things, as as soon as Mom recovers enough she can then appoint the POA. I think it is totally premature to consider guardianship.
You ask "what can be done in 3-4 days to better-ensure she gets the care she needs?" Do you have some reason to think she is not getting the care she needs where she is? Do you think the care will get worse if her daughter isn't in the immediate area? Mom was air-lifted to this hospital so it must have the reputation of being able to handle her trauma -- no?
Are son and DIL working (when they are back home)? How is that playing out with their absence?
DIL should talk to the social worker about how the communication will work when she is back with you. Can she expect a daily call (or make a daily call) from the ICU nursing station? Will the doctors call DIL directly if decisions have to be made? When Mom recovered enough to be able to talk on the phone, will that be possible a couple times of day? Can the social worker do some of the communication coordination?
I've been presumably adulting for many more years than you have, but I confess this situation would knock me for a loop. I admire what you are doing.
How much of this information have you confirmed? I hate to sound skeptical, but, I suppose I've seen so much that I just think that way now.
If what you have been told is accurate, it's a lot to deal with. Is the 23 year-old daughter who lives far away, really the best person to become Guardian of her mom? That's the only other option if no POA can be signed, that I am aware of. Is the mom mentally sound? Why did future DIL say that she didn't bring up POA to mom. Did mom have some aversion to it? That's often the case with people who are in need of help. Many people in need are the ones who refuse to sign a POA. It's unfortunate.
There are so many issues with insurance, medical care, bills, etc. While, caring is a great thing, I think I might encourage future DIL to speak with the hospital social workers about options for the county to see how they can help.
Perhaps, you'll get some more suggestions. I hope you can find something that helps.
A 'friend' is handling the woman's finances? No relation? Why isn't DIL or her siblings handling that? Typically, social security disability doesn't kick in until 2 years of illness though there are exceptions. Your DIL can make an appointment with the social security office to get specifics but the website has a lot of good info as well.
I hope others here can get the ball rolling on the issues you present.