Journal Entry #113 Watching Death

Today is day 4 of my mother being at Calvary Hospital.  This will probably be the last place she occupies alive.    So far I am satisfied.  Even though she is not communicating at all she appears to be comfortable.  About two weeks ago she was diagnosed as having necrotizing fasciitis or a flesh eating bacteria.  I didn't realize they never narrowed down which strain she has.  Because the only other way the doctors can treat my mother is with an amputation I elected for "comfort care", knowing she will eventually die from this.  At least she will die without having to go through the trauma of an amputation.  So for now I am watching my mother slowly die.

I cannot tell you how this makes me feel.  Because she is not in any obvious pain I don't feel any trauma.  However, because she is awake but not responding I have no idea what she is feeling.  I can't tell if she is going through any unnecessary suffering.  I do not know how long she will be alive.  For hospice purposes it is supposed to be six months.  Because she is not eating I doubt if she will last that long.  A part of me is sad  and a part of me isn't.

For today I am here (New Year's Eve) for a few hours.  I brought my I POD and Mom is listening to my playlists.  Right now it is gospel music.  I plan on leaving around 9:00 and go to the city somewhere and get something to eat and maybe meet up with a friend.  I aim to keep some balance in my life and not complete stress out.

Journal Entry #111 Hospice

I have not posted in a long time.  A lot has happend.  I will write about right now and in my next entry write about what's been happening.

As of today Mom is in a Hospice.   She has an infection in her leg and the doctors have treated it as best they could.  She is currently at Calvary Hospital.  I am not certain how long she has to live.  She appears to be resting comfortably though I can't be sure.  She was sleeping during my visit yesterday.

Right now the hardest part for me is waking up and knowing I will be getting that call soon.  The anxiety is the worst

Journal Entry #110

I am definitely convinced I was put here to go through these horrible events with Elder care and in part with the homeless.  Most of my friends either have younger parents or their parents are deceased.  It is like I am the pioneer of this mess.

Mom went back into the hospital late Monday night for what else...UTI and kidney stones.  She is supposed to be coming out today.  Nursing home sent her there and I think they were trying to be slick.  We are still debating a past due amount .  I think they ended the therapy too early.  Since Mom had the pain from the stones weeks ago I think the nursing home chose now to send her to the hospital and unofficially kick her out for non payment.  She still has some Medicare left so she is going back.  I no longer think the nursing home bit is a racket.   I think just about everything is a racket.  With nursing homes I think the owners get paid a nice amount of money to keep your elderly loved one alive and charge you over $400 a day to do so.  The finance lady at Workman's Circle quoted me a price of $450 a day.  I am still trying to figure out how this all works if you make too much for Medicaid and you actually need nursing home services.  Charity groups get paid per head they feed.  Is there even an incentive to eradicate homelessness and hunger?  We are trying to get people to live longer.  Why?  Who can afford it?

Journal Entry# 109

It's 2:00 and I am sitting with my mother in the nursing home.  Still dealing with the administrative woes but I won't talk about that now.

I made a playlist for Mom and she is loving it right now.  This playlist has Johnny Mathis, Nat King Cole and Sam Cooke.

The place is depressing.   There are about 25 residents on this 6th floor unit sitting in this area and most of them are vegetating.   There is one lady cursing every five minutes.  Mom was just asleep but she is alert.  Right now she is dancing to "Wonderful,  Wonderful ".  I am buying Mom a small ipod  so I can transfer music to her.

I was exhausted yesterday and didn't make it out here.  I am trying to make another visit tomorrow,  but I also have to see the Assemblyman and hopefully the nursing home personnel.

I am tired.

JOURNAL ENTRY #108

I follow up with Leon from Congressman Beneditto's office tomorrow.  I am praying for positive results.  I do have a small backup plan in case I reach another roadblock.  I actually have two plans.  One would be to use my work benefits to get a hold of a low cost attorney or apply for guardianship. At the very least her pension came through so I can get a few more things for the apartment in anticipation of her coming.

I visited Mom today.  The past three visits were really good.  She was alert.  I brought some music with me and let her listen for a few minutes and she loved it.

I sat down and wrote out what I am doing and for the month of May I have 22 tasks.  This is a combination of my tasks and Mom's tasks.     Some cost money and others time.  I think I can get a little more than half completed.

JOURNAL ENTRY 107

I have an appointment to see Congressman Benedetto this Monday.  I made the appointment this past Thursday.

I started off trying to see Congressman Engel.  I stopped by his office around 9:30 and an overly aggressive older African-American woman asked what I needed.  After interrupting me a few times I explained to her about the pension situation and first she told me to get a lawyer. she told me that the pension issue is a state one and that I should see Senator Benedetto.  I walked a few feet to the state senator's office. An older Black lady fielded my question and referred me to their office manager, a young Black guy maybe a little younger than me.  He politely let me know that they were really busy dealing with Coop City residents and getting their income affidavits notarized.  He made the appointment for Monday after asking me a few questions.  he didn't interrupt me.

I am praying he can be helpful.

JOURNAL ENTRY 106

These days, I feel like either I am putting out several small fires or like I have planted several seeds and can only properly attend to a few.

I am dealing with:

Mom, 

The Nursing Home

Mom's Social Security
The house
Mom's outstanding finances

Mom's pension

MY finances
MY physical health

My job
My mental health

My day to day life

And this is just off the top of my head.

JOURNAL ENTRY 105: The Future

I have NEVER been extremely optimistic over my future.  Up until about 2006 I was at best indifferent about it, meaning I never gave it much though.  Try and live as healthy as possible and that's it.  After 2006 I am not very optimistic about old age.  To be honest I don't really want it.  I will be content if I live to be just 70.

My reasons are difficult to articulate.  You would have to have walked in my shoes to understand even a little why I feel this way.  I will try to explain just a little though.

Dad really started to show his age mid to late 2007.  The specific even t that told me he was having issues came after he left the apartment and brought the police claiming the apartment was robbed.  From then came the sundowning and hallucinations.  His neurologist diagnosed him with Alzheimer's Disease.  I didn't think his situation was necessarily Alzheimer's but I knew there was some type of dementia.  In hindsight I don't think Dad's journey was hideous. He cooperated with me for the most part and I was able to leave him home for a few hours.  In the beginning I was able to travel to Florida and keep phone contact with him.  We had joint accounts and gave me no grief over handling business.  I made sure he made his appointments.  The worst he did was not eat like he should and he had that issue before the dementia.  With him the worst came if he was sick.  He had pneumonia in 2008 and had the fall in 2010.  I had to make  sure he was taken care of wherever he went.  I remember when he got admitted to Halifax just before Christmas 2010 in Florida.  The nurses were told he had dementia.  Still one evening I visited him and this one nurse freaked out and said my father tried to assault her.  Turns out the lights were off and she entered the room, NEVER ANNOUNCED HERSELF, touched Dad and he grabbed her, firmly.  Next thing I knew Halifax was trying to discharge my father after only two days.  He had a broken arm and was extremely confused in part because of the environment and the medication and of course his broken arm.  Another nurse intervened but I later realized that it was because of legal issues and not out of compassion.  He stayed another day and went to a rehab place now known as Solaris.

Dad of course never returned to his apartment and I had to watch his progress until he eventually passed away that following March.

Mom's journey has been a lot different.  She is an alpha female and is always in charge.  She showed signs of her dementia a couple of years ago but I am thinking she was going through it a few years before and it gradually got worse.  Her reasoning was changing since 2006 but I chalked it up to old age.  she is less reasonable than Dad.  She made out a will, a living will and health proxy years ago but financial stuff wasn't done until a couple of years ago.  She may lose her house now because she didn't transfer it to me.  I did it with the power of attorney.

I see how the "system" is wired against people.  POA's , health proxy and living wills are nice but occasionally useless.  In Mom's case the POA is useless in regards to her social security.

But I see how it sucks to even get sick at a young age.  My stint in the hospital two years ago showed me that.  So if I get to be 75 years old and get sick, the way things are now I could get the wrong treatment, suffer and die.  While being treated I can be fed food I clearly noted I am allergic to, suffer and die.  If I get dementia I may go to a nursing home, be abused, suffer and die........just before the state sucks my assets dry faster than a crack whore for a fix.  Personally I have not been fond of any of the nursing homes I have been to aside from Beth Abraham and they were fair.  If I stay home I am in danger.  If I stay at my house I may lose that.  There is even more but right now I am not even in the mood to go through it.  A long time ago I thought I would take care of myself to be able to live to be 80 or 90.  Now I see living that long as a way to fatten someone else's pocket while I am barely able to appreciate life.  Let me go at 70.

JOURNAL ENTRY 104 The journey so far

The last time I wrote I mentioned that Mom was at Workman's Circle for rehab and was recently being discharged.  While the facility can't just kick her out they did end her Medicare and now they can charge her privately since she does not have Medicaid yet. I am working on the slow and painful process of Medicaid. Meanwhile I am also filing appeals for the Medicare early discharge.  This also includes a complaint filed with New York State Health and Hygiene. 

So far I am about to start the third level of appeals.  Based on what Workman's Circle doctors put in Mom's medical files she is walking 30 feet with minimal assistance.  I was there last Saturday(4/7) and she wouldn't get out of be and walked while being held up by the therapist.  And she can't eat on her own. 

The first level of appeal went to a group called Livanta.  I won the first week (shortly after April 1).  Workman's Circle never supplied the medical records.  They immediately filed again to discharge Mom and I again appealed and Workman's Circle won that.  I appealed that to a group called C2C and they found in the Home's favor.  Now I have to go to the net level.

NOW I have to fight with NYCERS, the people in charge of my mother's pension.  Every so often they send a letter they want notarized.  I guess it is to make sure the person getting the check is still alive.  Back in September I got Power of Attorney over Mom. Good thing as she is now showing signs of dementia.  Turns out NYCERS legal refuses to acknowledge the POA.  According to them even though the form was notarized and filed in a FLORIDA COURT and approved, Mom didn't sign in front of the notary, which she did, and they are forcing me to refile using their form.  Problem is Mom is in no position now to do this. Mind you Mom did sign in front of the notary public.  Florida would not have accepted the form otherwise.  All of these roadblocks are from people who are supposedly looking out for the best interest of the elderly.  So now not only can I not speak on behalf of my mother but her money may be suspended.

Social Security  is a nightmare almost as bad.  Because of Mom's mental state I had to file a form (I will remember it later) to handle her business there.  Social Security won't even acknowledge the POA.  Of course I need Social Security and NYCERS  in order to get Medicaid for my mother.  For those very few reading this Medicaid will not authorize without current address.  Specifically they will not pay for Mom in New York if her check goes to Florida.  I cannot change that yet.  And of course she may only be getting half of her money because of NYCERS.

In all of this er bank was no problem.  They acknowledged the POA.

For now I am at a major roadblock.   The only thing I can think of is to contact a congressman and ask them to intervene in the pension issue.  Meanwhile I will have to let Mom stay at Workman's Circle and accumulate bills.

Journal Entry 103: DECOMPRESSING

The dictionary lists the definition of decompress as "to release or reduce the physical pressure on something or to have the physical pressure released or reduced".  Is also means 'to relax".

I learned from dealing with my father years ago that you need to take time to relax.  I didn't do enough of that in 2007 and almost had a breakdown in 2008.  To do this care-giving thing you have to acknowledge your tools and use them.   From there you have to take time to decompress.

Even with Mom being in the nursing home I still have to prepare my apartment for her eventual arrival, get her paperwork together for Medicaid, visit her, try and keep up with her progress, go to work and keep up with my own life.  And in visiting Mom I have to pay attention to things in the nursing home while observing Mom to see what she needs help with.  There is more involved in my dealings with her and I am certain other people have a larger grocery list.  This is why it is important that you take time to decompress.

During the week my day starts roughly around 6 in the morning.  Between 7 and 9 I am commuting to work.  From 9-6:30 I am physically at work.  From 7 and 9 that evening I am in commute home, occasionally stopping to get groceries.  Sometimes I may get home a little after 8.  It is safe to say 9:00.  From there I have to eat and prepare for my next day.  I will go to bed somewhere between midnight and 1. In the four unaccounted hours I have to do what I can after I eat.  This would include making calls or texts, personal stuff, cleaning, etc.  Most of the time I just vegetate or decompress.   I won't look at the phone.  In fact my ringer stays off.  I will text or IM you.  I don't even write.  I may play MLB-The Show.  I have to do something to recharge my batteries.  Saturdays and Sundays aren't much better except I don't have to go to a job I don't care for. There are down sides.  I don't return many calls.  If you don't text me I probably will not respond.  I will take an occasional trip to Washington DC or Philadelphia for a day.  It is how I keep sane though.

As I am writing this I am on AMTRAK going back to New York.  I had to go to Florida to get clothes for my mother and tend to some other business for her.  I always take the train back.  It's relaxing.

I am ranting right now but I needed to let it be known the importance of taking time for yourself.  Decompress.

Journal Entry 102: The Appeal

Just when I thought things were awful I got a call yesterday from the Appeals Board informing me they were ruling in my favor.  Turns out Workman's Circle never submitted paper work regarding my mother's medical records.  I called the Ombudsman back and let him know.  I actually called him early that morning for assistance.  He called me back mid-morning and about an hour after I hung up from him I got the good news.

According to the Appeal Rep the decision means my mother can stay until they submit paperwork.  I called the head social worker Thursday and Friday and haven't heard back

In the meantime my quest to get Mom Medicaid is slowly coming to an end.  I just need to get Mom's address changed.

Journal Entry 101 The Nursing Home Mess (Written 3/28)

So I get a call this evening (3/28/18) from the nursing home.  They leave me a voice message and I find out they are set to discharge my mother Monday, April 1st. I am in Florida getting Mom’s clothes, trying to take care of the deed on the house and tending to social security matters.  Now one of their representatives called yesterday and told me that her rehab ended as of March 30th.  The lady spoke about billing the second insurance starting then if she has it.   Workman’s Circle (the home) wanted me to sign papers but I told them I couldn’t.  What pissed me off was this lady said she would just mail them and basically tried to dismiss me.  She did follow the script and let me know I had the right to appeal and that I had 2-3 days to do so.  This was all going very fast for me.   Too fast.
She actually called about noon yesterday but I wasn’t in a position to accept the call.  I figured I would just check my voice mail to se what they wanted.  But she didn’t leave a message.  She kept repeat dialing me until I picked up.  A little like a collection agency.  She was prepared to deal with me and brush me off.  I wasn’t prepared for the shock.
I did contact the appeals place and spoke with a gentleman who took my information down and told me to expect some type of reply within the next few days.  Then I got the call today.  Once again, the call came close to noon and when I didn’t answer it was a rapid fire of repeat calls.  I was inside the Social Security Office so I just turned my phone off.  Again, no message.  Workman’s Circle did call back during the evening while I was at the supermarket and they actually left a message this time. 
So, what am I going to do?
Well I actually get back to New York on Sunday, which is Easter.  I have no intentions of signing my mother out.  I am not waiting for the appeal either.  Tomorrow (Thursday) I am calling the Ombudsman in New York.    After I speak with them I will contact the nursing home. 
Mom was admitted to Workman’s Circle February 1st.  She just got out of the hospital after dealing with a urinary tract infection and kidney stones.  She wasn’t walking at all.   This was supposed to be a rehab stint with a possibility of it being long term.  With rehab though, Medicare covers the first 100 days.  That’s a little over three months.  I had plans on her being there the entire time.
Additionally, I never had a meeting with the team.  When Mom was at Solaris in Florida a couple of weeks before her rehab ended I met with everyone who dealt with her.  I saw her dietician, physical and occupational therapists.   We assessed everything and had a somewhat flexible time frame.  Aside from the admitting folks, I met with the social worker and I saw the physical therapist once.  No team meeting.  In fact, the social worker told me there would be an assessment meeting but failed to contact me before they actually had it.  She contacted me the morning of.  I was on my way to work and actually found out about the assessment after it was over.  This means I was unable to express to them my expectations.  I don’t know how she has been eating or walking or bathing or using the toilet or anything.  I was told that the next assessment was to come in three months.   Mom is supposed to come to my apartment after rehab is over.  In fact, some of the nurses think she can’t feed herself so she has been feeding herself infrequently.  The icing to this shadiness came last week when the social worker called me.  She called Wednesday of last week and left a message telling me it was no emergency but she wanted me to call her back.  I returned the call within minutes and she told me my mother was moved to another room.    That is all she said.  Nothing about the rehab being over. 
I am hoping and praying that get somewhere with the appeal and the Ombudsman.  I am still working on address changes so I can apply for Medicaid for Mom.  If I refuse to sign off they may start billing her private.  She can’t afford that.  Always something.

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