Sunday, March 13, 2011

completing a POSTfor Mom - the hard part about having Power of Attorney

During Mom's  hospitalization, I had to fulfill the uncomfortable part of being Mom's Power of Attorney.  I filled out a form called a P.O.S.T - Physicians order for scope of treatment.  It is intended to provide medical directives if a patient becomes incapacitated.   Normally completed by a patient and their doctor, I filled it out as Mom's Power of Attorney.  It is not something I ever wanted to do for Mom but it was clearly necessary at the time.   The POST replaces the DNR, the do not resuscitate order and living will.   With the form, Mom's doctor will work to ensure she's comfortable but no extraordinary measures will be used to prolong her life.   She's told us over and over that she wants no "tubes and wires" so this will ensure that no medical provider - not the nursing home, the hospital or the ER  - will go to extraordinary measures to keep her alive.  The form is easy enough, I checked off a few boxes and made some notes after talking with her doctor. 

This is the hardest part of being a Power of Attorney.  It is not something I want to do for Mom but it is something I agreed to do when I became her PoA.  She trusted me to carry out her wishes and look out for her best interest.  I believe that if a medical professional spoke to my Mom now, she would tell them to do "everything they can".  However, given her increasing forgetfulness and the combination of narcotic pain killers she's taking, I am not certain she could understand exactly what  "doing everything" means.   I based my instructions on the POST based on conversations I had with her a few years ago and on her current condition. 

This is the sad part about being her PoA. I signed papers giving instructions to her doctor about the end of her life.   It means that the end could happen at any time, for any reason that might be minor for someone younger and healthier. It really hits home how grave her condition is.

What is a POST? What is a physicians order for scope of treatment.?  What is a DNR?

Suggestions from "youngsters" are just so annoying...

Over the past couple of weeks people have tried to be kind but it in the end, I come away completely annoyed and want to smack more than a few faces...   I should be more grateful of their attempts to be supportive but people are just so, well, stupid.  ..And, they don't listen.   Friends, coworkers and even my own family, ask about Mom and what happened to her..  They nod, looking me in the face, as I speak, they seem to understand. Then  they say something like, 'Well, can YOU move to take care of her? Why don't you move her here,  closer to you..."  .I want to scream, ' SHUT UP DUMB ASS!!  Don't you think I've considered it? That I've investigated all the possibilities?  Don't you think I would if I could get some financial help? Do you know how hard it is to find a doctor willing to accept a new patient who's this old and on Medicare?"

Then there are those who think they know about medical care - they recommend ibuprofen, Ben-gay icy packs or hot bathes.  Hot bathes? Ibuprofen?  Come on, it's all I can do to keep from doing a huge eye roll.  Mom is so very far beyond some simple fix like Icy-hot.  Her sacrum is broken!  That's in her lower back!  It's connected to everything! Any movement is excruciating!!

She's on narcotics for crying out loud!  Ibuprofen won't help her now. Nothing that simple will ever help her again.  They act so smug, like it should be so easy and clear cut.   It's not easy and  the solutions aren't simple.   Old people have old bodies and old bodies require special care.  No hot bathes, that means hot water and it could burn their thinning and sensitive skin.   No heat packs, that might also burn.  

This stupidity is due to ignorance; they are uninformed about old people.  They don't know what they're talking about  and they don't wait to listen for an answer or explanation.  This means that they really don't care.   They're just making small talk.  Really, I wish they'd just talk to me about something else  less emotional.   On a much larger scale, I wish people knew more about the elderly.  I wish people realized the limits old people face.  I wish they understood the issues old people face.  I didn't until I began helping elderly uncles and my parents .  I had no idea the complexities of medical coverage, drug interactions or the basics of tending to an aging body.   I wish there was some module in health class in high school that described what parents and grand parents might go through; drug interactions, narcotics and Medicare Part D.  They might have an easier time helping their own parents and would be less self-righteous when others are trying to do the same.


Wanting to take Mom home and angry at the system

Damn - I wish I could take my mom home.  I wish I could be there to see her daily.   My cousins try to be supportive and urge me to let go of the guilt.  At at the same time they admit to terrible guilt that they couldn't care for their mother at home either.   It just takes SO much - money, time, lifting, coordination.  Someone's got to be there with her all the time since she can't do anything alone.  It's a lot of extra washing, cooking, running to the doctor - it all takes time, generally time away from work.  To hire help takes  money - more money that any of us have.  We can't afford to quit working to stay home and care for her; even working we can't afford to pay for our own expenses and hire someone to help her.    It seems so wrong that the state will pay so much - over $4000 per month - to let someone else take care of Mom.  I'd do it for less if I could get the help.  I'm not greedy, I just need enough to get by, enough to hire some help when I'd have to run errands or something and then enough to get my life back on track after she passes.

Keeping life on track - that's another source of guilt.  I've got another 15-20 years of work ahead of me.  In my 30's and 40's it was derailed by my fathers illness, my marriage and moving to meet a husbands military obligation. I'm just now, at 49, beginning to rebuild - a home, savings, a career.....I COULD go take care of mom but the long term sacrifice would make it much much harder to start over.  I'd be that much older,  technology will move ahead quickly and my ability to keep up will be dulled. Mom used to say, "It's hell to get old".  She's right. She's in her own hell - a horrible state with no options and I'd be dammed if I do and dammed if I don't.  Damn.

Mom's condition, financial need and doctor's requirements leave us with no choices

Mom will move back to the nursing home on Monday and I'm sick over it.   This is the same nursing home that failed to fix the brakes on a wheel chair THEY own, the name nursing home that failed to take her increasing pain seriously and tell someone...  and there's nothing we can do about it.

There are several things that limit per options: First, she can't be at home and we can't care for her there without a major remodel and we'd need to hire someone to help with the lifting and washing, which none of us can afford.  She needs medicaid (state aid) to supplement the cost of the nursing home.  Her physician has approved only 2 nursing homes in the city where she lives and one of those won't accept medicaid.   Thus, she must go to the ONE nursing home he'll approve AND that accepts medicaid.

My brother and I aired our concerns to the staff - they nodded as though they understood but none offered explanation or ways to improve things.   My brother and his wife are so concerned that they want to create a schedule to ensure someone from the family visits daily.  They want to divide up the week between themselves, their daughter ( my niece), my 2nd brother and my nephew.  They want me and another niece to split up weekends so that we can visit on a Saturday and Sunday to give them weekends off.  I'm not opposed to this and hope they'll hold up their part of the bargain.   I'm ready to hire someone to visit her 3 times a week; no set schedule, just drop by and report back to me.  I think it's the ONLY way to ensure that Mom's well cared for.  

I don't want mom to return to her room and current room mate.  Mom says she WANTS to return to it but she doesn't realize that it's not necessarily the BEST option.  If she had a different room, she could have a larger TV and a phone that's easier for her to use.  If she had a different room, she'd have some exposure to the outside, some sunshine perhaps.  As it is now the room faces east and a tall thick hedge 3 feet from the building.   Her roommate refuses to go to another wing because in this one she gets free TV and phone.  It's also a "medical rehab" wing, where most of the residents are fine mentally but going through rehab with the intent to return home.  So she's stick again but she'll be back in a familiar place.  That's important on some level too I suppose.  It's not the BEST solution, but it's the only one we can muster for now so we must make the best of it.