JOURNAL ENTRY 100-The Montefiore experience

I have just done the unthinkable.  I have just had breakfast AND lunch at McDonald's

Bringing you up to date, I have just spent the last 24 hours at Einstein Hospital, a division of Montefiore Hospital.  We left Florida yesterday and the plan was to have Mom admitted to the hospital to be evaluated so she could go to a nursing home.  Unfortunately to be able to use Medicare a person has to be admitted to the hospital for three days then transferred directly to the rehab facility.  Medicare will pay 100% of the first 20 days and 80% of the rest of the three months.  Somehow Mom's insurance paid for 100% of more than one month.  Okay with me.

Now you have to find a way to be admitted.  Generally claims of weakness and lethargy get the ball rolling.  Since we were flying I expected Mom to be weak and lethargic.    Unfortunately she was confused as well so her hospital visit was a little more real.   She asked me about seven times where we were after we landed at Kennedy Airport. It didn't stop during the ride to Einstein Hospital.  And it got worse once we got to the hospital.  They kept Mom and I would have insisted if they didn't want to.  What I didn't expect was to still be in the emergency room 24 hours later.  Years ago I had a family member going through a mental breakdown  She waited in the emergency room over a day.  As of 3:30 this afternoon Mom still doesn't have a room.

Montefiore is not one of New York's public run hospitals.  It is privately run so you expect more from it.  Jacobi Hospital is a public hospital and I saw a doctor within an hour of my visits.  Mom was seen in a few hours and checked out.  However getting a room is taking a while.  I did get to run home at six this morning and come back at 8:30.  After six hours though my pee was coming out brown, an indication I am becoming malnourished.  I am about to go back to the hospital hopeful I won't spend another night in the ER.  

room

JOURNAL ENTRY 99 (Wakes, funerals and burials)

We had the wake for my aunt January 5th.  Even though she passed away on December 19th my cousin wanted to give family and friends the opportunity to come down to Daytona Beach.    The passing came so close to the holidays she figured it would be a nightmare trying to get affordable flights.  Plus people normally have plans for the Christmas holidays.    Folks are already paying a fortune for gifts and food, why add to the burden by having to not only fly during the holidays, but to find a hotel during that time.  Fast forward two weeks later and it didn’t exactly work out as planned.  A major storm hit the east coast on Friday and three key people were unable to come down.  The wake was still beautiful.  My aunt looked fantastic.  The undertaker did a spectacular job and my aunt truly looked as if she was sleeping.     I guess DVD tributes are common nowadays and we had a great presentation of old pictures of my aunt, family and friends.   It was not a depressing ceremony by any means.
The funeral the next morning went even smoother.  The Episcopal Church had a closed casket service which is something I believe in.  The focus was on the service and a few people (mostly family) said some very nice things regarding my aunt.  We had the repast after the service then came back home.  The burial is January 8th near Tampa. There will only be about seven of us.
My mother didn’t go to the wake or the funeral and she will not be going to the burial.  From the time my aunt passed away Mom had a difficult time accepting the death. She kept asking me if it was true.  She never talked about it at all.  In fact, she occasionally brought up my aunt to see if she ate and had to be reminded that her sister was no longer here.  Mom would get quiet.  On the day of the wake Ida tried to get Mom up to get her dressed and Mom refused.  Then she got quiet as if Ida wasn’t there.  I called the house and spoke to her and she SAID she was going to let Ida get her dressed.  She never budged and wouldn’t speak.  Ida suggested not forcing her to go.  I already made that decision. Still later while the family was at the house it finally sank into Mom’s head what was going on and she started to cry.  “I thought someone was trying to make a joke”, she said to me.  I told her that I wouldn’t make a joke like that.  She still didn’t go to the funeral the next day.
My aunt was 82 when she died. She was the youngest and Mom is the second oldest which means my mother knew her for 82 years.  They were the closest of the sisters.  I can only imagine the pain my aunt’s death must bring.  As for the burial Mom doesn’t do long car trips very well any more.  This one would have been at least two hours each way.  She would have been traumatized by the trip and I would have been traumatized by Mom.
Later this week HOPEFULLY I bring Mom back to New York

JOURNAL ENTRY 98 (THE WAITING GAME)

As of today I am still waiting for the assessment form from the doctor to be sent to the nursing homes In New York.  From there I am praying she will get accepted to one of three I selected.  Also praying they can assist with Medicaid.  Really praying I can get Mom back to New York.  My very weak backup plan will be to bring her back to New York next Friday or Saturday and put her in my apartment temporarily.  If I stay here much longer we will be broke and stranded.  If I am to be broke let it be in New York City.

SLOW PROCESS

In order to place someone in a nursing home I found out the doctor, visiting nurse or home attendant has to fill out a form assessing the individual.  I found that our when I attempted to place Mom in one during Hurricane Irma back in October.  I wasn't aware of how serious it is until now. 

In attempting to get Mom into a nursing home in New York the facilities are asking for a PRI (Patient Referral Instruction if I am correct).  This is a standard for explaining the patient's condition and prognosis.   It is used to explain what the patient will need and possibly how long.  The problem is some of the people in New York asked for it by name and other states have something similar but not with that name.  You would think people out of state wold know the form and procedure by name but that would be asking too much.  I took the time to find the New York form online and give it to Mom's primary doctor.  I m working on the visiting nurse.  Now, the nursing home will tell you they need the form from the visiting nurse as opposed to the doctor because the nurse interacts with the patient more.  Mom's condition hasn't changed in months.  She can't do anything for herself except feed herself and wipe her own behind. I am getting both people to fill out the form.  I am running all over the city though.

Meanwhile I am more and more concerned that I won't be able to get my mother out of here.  Transporting her is one thing.  Then there is that Medicaid monkey on my back.

Based on what I read Mom should be eligible for Medicaid even though she makes too much. I am praying for the "spend down" since she is very medically needy.  She may ne able to feed herself and wipe her own butt but she can't fix her own food and she needs help getting to the bathroom.  She can't bathe herself without assistance.  Hopefully this will be enough to gain her some services.

All of this has transformed me into something.  Something I really do not like so far.  I will explain another time.

Right now I am taking a quick break at the library.  I need to get some more forms printed so I can fill them out and mail them tomorrow express mail.

BITTER TASTE

The wake, funeral and burial for my aunt are this weekend.  She passed away on December 19th and I still feel a particular way about the hospice care.  I still think they took her out.  They took the opportunity to let the fluid in her legs build until it got in her lungs.  Instead of getting rid of the fluid they gave her morphine basically to make her comfortable and lorazepam to relax her while she just died.   Don't get it twisted...I had no delusions that a frail 82 year old would survive pancreatic cancer.  However, I think it was tasteless to do nothing for her and allow her to die just before the holidays.  At the time my aunt had edema.  Treatable.  My aunt also was with the hospice since April.  At 77 pounds people just knew she would die within a month.  She lasted a lot longer.  The nurse assigned to her knew of her resilience so she was removed.  As soon as the new nurse came on the family had resistance and got the usual speech "we are just trying to make her comfortable".  No more than a week after the new nurse got on board my aunt was dead.  Yes, there is a possibility she would have died soon anyway, but not the way she ended up dying.  I wonder how much of a bonus the nurse got.

Moral of the story:  Hopefully your family member doesn't have to go through any suffering.  But while people are alive, as uncomfortable as the conversation may be, talk about how they want to be treated and how they want to go.  Try to have a strong advocate on your behalf and your loved ones.  Try to avoid having the provider take complete control