SCREW IT

I messed up on one of my resolutions but I am going to make every attempt to write in this blog at least once a week.  I have changed emotionally from this time last year.  Probably the biggest reason I haven't written as much.

JOURNAL ENTRY #115 REACHING THE SPEED LIMIT

Today is my 55th birthday.  I have reached the speed limit.

I am spending the time in Florida.  In fact, I arrived in Orlando last night and I am going to Daytona Beach in a few minutes.  I need to check up on Mom's house and any affairs she may have had.  I think I will also change her address.  She shouldn't be getting any mail but to anyone wishing to send it I will give my address.

This is a rough one.  I lost two people this year and this is the first birthday I am spending without Mom.  She would have turned 92 yesterday.  I have spend probably the past 15 birthdays with her.  You'd be amazed at how much you miss the little and simple things.  For her birthday the only thing we would do is go to maybe Carrabbas or Red Lobster and have cake at home.  Nothing extravagant.  We both loved it.  She was more frail in recent years but she loved getting hugs and kisses from me.  I still miss making her giggle or pretending to sit on her lap (trust me you would have to see it to appreciate it)

I miss getting a call on my birthday from my best friend.  He passed away July of this year.  I also miss the other small talk we would have, especially while I would be in Florida.  He was my voice of reason.  When I wanted to rant about the nonsense I would experience in Florida he was usually there. 

Today I especially miss both of those voices.
 

DETROIT 10/2019

This is my first vacation in a few years.  I heard a bit about Detroit, though most of it.  I did hear though that the city is changing and people are slowly starting to move back.  Homes sell for as low as $5K which sounds nice but considering some of the neighborhoods I wonder.  It's worth looking into.

This is the Motown Museum.  Not exactly what I was thinking it would be.  I got there too late to make the tour so I just took photos.  Funny, they don't allow cameras so it wouldn't have made a difference.

Crazy

This is crazy.  I came all the way to the library to type up my blog and I forgot what I wanted to say.

😡😡

Nursing Home rant

I was talking to a friend yesterday regarding nursing homes and how to choose the best one.   We both came to the understanding that generally there are no good nursing homes..

You might want to chalk this up to the recent events in my life regarding Workmen's Circle but to be honest but I think they are all terrible but sadly necessary places.  Before Workmen's Circle I had my Dad at Beth Abraham.  He was really there for their rebab and died about a week before the assignment ended.  He had a massive heart attack.  The care he had gotten was adequate.  There was no reason to believe he was abused or mistreated.  He stood up after having dinner and had a heart attack and died by the time he got to Jacobi Hospital.

Thinking about the future

This ordeal with the nursing home has me thinking about the future.  At some point I will get old and I have to consider what to do with myself.  I have no children so I have to make a plan and write it down and keep it in case I ever become incapacitated.  Here's where I am at right now:

Personally I don't want to get old.  Seriously, I don't want to get to the point where I have to consider a nursing home or home attendants.    I am thinking about having a living will or mandate that states that if I get a heart attack or stroke that I do not wish to be resuscitated. Especially if I am 70 years old or more.  The thought is why keep me around if I am going to need care?  I have come to the realization that the purpose of elder care is to get someone paid, even though in most cases the senior is receiving inadequate care.  Not necessarily to the level of abuse but enough that the person getting the care is usually not happy.  When my aunt  was alive there were quite a few days we wondered if anybody was going to come and assist her.  She was in one of the worst case scenarios in that she needed total care.  She had no use of her limbs.  She needed assistance for EVERYTHING.  And the attendants, not all of them but a handful would occasionally no call/no show

You have to be very crafty and very early to preserve anything you earned.  Property in particular.  If you own a home you had better make sure someone else's name is on it or you will lose it.  You should be able to pass your home to your loved ones without such a fuss.

A few years ago I had a hospital visit and I was at Jacobi Hospital for two weeks.  While I was there they almost poisoned me.  I documented that I am allergic to nuts and legumes and they still came around and served food that had nuts and legumes.  If I have to go to a nursing home it will more than likely be because I have some form of dementia.  This means I won't be able to advocate for myself.  Most of these facilities have employees just going through the motions.  They really don't care about food intolerances and allergies.  They just want you fed so they can put you to bed. 

I am working on writing out my final plans now.  At least the health care proxy and living will stuff.  I am even examining possible cancer care if I unfortunately get cancer.  Because of Gahani (my friend who just passed away)  I am seriously looking at how I would want to deal with cancer if I get it.  Gahani went through a brutal recovery before he died.  What's the use of going through chemotherapy and radiation treatments if my quality of life is going to be horrible?

Labor Day Weekend 2019

For the first time in about ten years I won't be at the West Indian Day Parade.  It is raining today and my rules are I only go to Eastern Parkway if it is not raining and if the temperature is over 70 degrees..  The bad things is it is after 4:00 in the afternoon and the sun is just coming out.  Doesn't matter.  God willing I will see it net near.

I haven't written much for the entire year.  Truth be told it feels like I have given up on writing.  The year has been so stressful.  Let me bring you up to date.

I've already documented that my mother passed away in January of this year.  She picked up a nasty skin infection on her leg in December.  So nasty that the hospital said they would have to amputate her right leg.  Meantime the nursing home she was at evicted her as soon as they sent her off to the emergency room.  It didn't matter though.  The infection was so severe Mom ultimately had to go to a Hospice.  At age 91 what was the use of traumatizing her by amputating her leg?    I chose to let her go with dignity and with as little pain as possible.  She went to Calvary Hospital and they kept her comfortable until she passed away January 16th.  The funeral was two weeks later and Mom is resting with my father.  I have documented most of this before.

What I haven't documented was the situation with the nursing home.  This is mostly because there is a battle growing between Workmen's Circle and I.  They are attempting to sue me and not Mom's estate over what she owes the home and I am counter-suing them for neglect, abuse and her pain and suffering. While Mom was at Workmen's Circle she ate, slept and apparently took pain killers but the home did very little else.  Because they never got her up or walked her she lost circulation in her left leg and developed gangrene in her right toes.  She had that for about three months before it was even close to being properly treated.  Meaning they sent her to the hospital for an ultrasound in late October or November. Three days after her 91st birthday she was discovered to have an advanced infection on her left knee.  It was presumed it was because of the infection on her toes on the same foot.  While at the hospital the nurses noted the bed sores.

Dad was at Beth Abraham in 2011 and died there.  He owed money but they went after his estate and it was eventually paid.  Equally as important Beth Abraham did their job with him.  When Dad died from the heart attack I had no reason to go after them.  I could have but the motivation would have been greed. 

I had to file three complaints with New York State Health and Hygiene regarding my mother.  At a later date I will post the actual complaints.

Bad year

I have cellulitis again.   I caught it in my left leg around 2014 or 2015.  Just got it in my right leg.  I noticed swelling on both legs over a week go but it is normal for me to get swelling on the ankles when it is warm.  I kept my eyes on it.  I got concerned after I found the skin on my toes cracked after I had showered.  On Monday I felt a pain on the leg so I went to City MD Urgent Care that evening.  Something I will never do again.  The doctor took my information and checked out my leg then told me it probably wasn't cellulitis.  Told me the pain was probably due to a muscle strain and that the skin was dry. By Thursday I felt the abscess.  I went to  where to Jacobi Hospital where the doctors there treated me for cellulitis.  I was lucky.  First time I had this I had to take an ambulance to get to the hospital and I was there for ten days.

To add salt to the wound one of my best friends passed away Tuesday.  I am not ready for this.  I am still dealing with Mom's passing.

Miss you Dad

This past Saturday was July 20th.  My dad would have been 92 years old.  He's been gone now for eight years.  I'm not going to lie and me melodramatic but I will say I still miss him.

Since he passed away I have taken off on his birthday.  I just don't care to be at work on that day.  This time I went to Washington DC and spent the weekend.  I am writing this on the train ride going home.

I still miss his face and his compassion.  I miss his guidance, his values and his friendship.

I love you Dad

Four months later...what I have learned.....so far

It's been over four months since I write on this blog.  I call it an unexpected time out.  You expect a person to take a little time away after the loss of a loved one.  I thought it would have been right after Mom's funeral.  I didn't expect for it to be a month afterwards and for the timeout to be so long.  In any case, some of this is going to be new and some of this will be rehashed.

I have been back at work consistently since the funeral..

I have not gone through any depressions since February.  In fact I have not noticed any significant changes to my moods at all.

I still feel emotions I cannot fully describe.

I miss my mother...however I am still relieved she is gone.

I am glad to no longer get calls at midnight or at six in the morning.

I deeply miss Mom's laugh.

I miss her love of sports.

I miss her encouragement

In this 13 year journey where I have taken care of both of my parents I have learned that I do not want to get old.

In this 13 year journey I have learned that if I get a major illness I will more than likely let that take me out ass opposed to allowing myself to be chronically ill for a number of years.

In this 13 year journey I have learned I have absolutely no trust for people, especially when it comes to healthcare.

I have learned that there is really not that much of a difference between nursing homes and home care.  People are over charged and still subject to abuse.

I have learned that if you have property, especially a home, you need to have someone else's name on it or it will be taken from you.

I have learned that states with no taxes are not necessarily good for you.

I have learned you need a will, power of attorney, living will and health proxy as soon as you can think of one.

I have learned that you have to think NOW as to what you want to happen to you if you get gravely ill.  You really need to think about hospitals and nursing homes. You need to know that most people do not care about you like you think.  The  majority have no problems letting you sit in your own urine, feces or vomit.

I have learned there are worse things than heart attacks.  Dementia is an awful thing to live through.  Not having control over your body is a horrible thing to live through.

Post funeral

It's been almost a month since I buried Mom.  I am handling it better than I thought.

She is entombed with my father .  The spot was originally mine. but a few years ago after I saw my parents essentially reconcile I thought it better for Mom to use it.  I want to be cremated when I die. 

Overall I still feel a few different emotions, even after a month.  The best I can describe it is a combination of grief, sadness, relief,  along with emptiness.  Most importantly now I feel a sense of freedom.  For the past 12 years my life has been on hold.  First taking care of Dad, then my mother.  From 2006 I really haven't had much of a life.  Don't get it twisted, I would gladly do the same thing again.  Now I feel like I can start having my own life again.  I will always miss both of my parents but I am glad to have been able to do something for them in my life.

1/28 The day before the funeral

Been busy and haven't posted any updates since Mom passed away.

I have been handling this well.  I am sad, but not overwhelmed.  I am not feeling any extraordinary grief.  I miss my mother but I am ready to move on.  As I said in earlier entries there are no words to describe my emotions right now. There are things I guess I am supposed to feel that I am not.  Similarly, there are things I feel that don't seem right but here they are.

Because this is my mother I guess I am supposed to be overwhelmed with grief and sorrow.  I actually feel both sadness and relief.  I no longer have to worry about the phone ringing or being told that she is sick.  I no longer have to see her in a lesser capacity than I am used to seeing her.

Believe it or not I am anxious to move on to the next phase of my life.  I look forward to taking a few weekend trips and getting my apartment together.

The hard part comes tomorrow.

1/16/2019 Dorine Gibbs RIP

This afternoon around 12:30 my mother passed away at Calvary Hospital in the Bronx.  She was 91.  She was diagnosed with an unspecified form of Mrsa on December 18th and was never able to recover. 

Right now I couldn't tell you what I am feeling.  I honestly couldn't.  I feel a number of things.

Grief:  Naturally.  I just suffered the loss of my mother.
Relief:  I will no longer have to watch the shell of her and more importantly no longer have to watch her suffer from this infection.
Anger:  Towards the people responsible for my mother's infection.
Withdrawn:  I really don't feel like talking about her.  As well-intentioned as people are I am not ready to deal with this to others
Ambitious:  Ready to take care of her business and to move on.
To a certain degree, free:  I can for now reclaim a part of my life.  Still no regrets on what I have had to do.

I last visited Mom yesterday.  She had difficulty breathing.  Her oxygen level was at 78% so they had an oxygen mask on her, but she seemed to still have trouble breathing.  This is the only time I can say she suffered.   There was nothing I could do.    I didn't think she had much time though.

May you rest in peace Mom. 

Day 18

I have not been too emotional during this ordeal with my mother.  As I have mentioned I am at peace to a degree.  It does hurt to see her non responsive.   I do get a little emotional though when I relive memories.   Today I got misty-eyed when I though of my worth to nmbith of my parents.

My mother would tell my name out at the nursing home whether I was present or not.  A lady who shared the room with her greeted me with my full name.  She knew it because of my mother.  To me that is the highest honor.  It shows live and trust for a person to look for YOU.  My father was similar.  He wouldn't budge without knowing that I knew what he was doing.  I had to be doing something right.  I just pray that I did everything I could.   I think I did.  I hope that I did.

DAY 17: A small tribute to my parents

As I left my mother Day 15 I leaned over to kiss her and to tell her that I love her as I always do she turned her head away.  This is normal when she is aware.  She is funny about people just touching her.  So her actions told me that on some level she was aware.  So I said her name and my name and said "I love you Ma".  She turned her head back towards me and not only allowed the series of kisses , but she smiled.  It was different than other recent times when we wondered of she was listening to us (which she was).  He entire face changed.  She actually smiled and seemed more content.  Yesterday she wasn't as good but today her eyes were open and she attempted to squeeze my hand as I kissed her.  I have a ritual where I kiss her cheeks and her forehead and I rub my nose against hers.  She normally reciprocates.  I am hers and she is mine.  Today she actually looks a little more comfortable.

I was not supposed to be here.  According to BOTH of my parents at different times, they both prayed hard for me.  Mom had fibroids and was told she probably would not have children.  According to my mother AND my father they prayed long and hard for that to change and by the time they were both 37 I was born.

Neither parent was perfect but they were the best anyone could ask for.  I wouldn't have wanted anyone guiding me besides those two.  They made sure I was their priority.  They divorced early in my life but I didn't lose THEM.  I never had to look for my father and my mother never made it difficult for me to see him.  In addition neither got involved with anyone while I was growing up.  They both agreed that it was bad enough they put me through a divorce.  They didn't want to complicate my life further by having love interests.

As we all got older I could have spent my life elsewhere.  I love California but I chose to stay near them.  They were there for me, it was only fair that I stick around for them during the years they would need someone the most.  Yeah, I could have enjoyed my life more somewhere else, but I have NO regrets staying.  As I turn to look at her even though is is 95% non responsive I know she knows I am here.  She will occasionally show signs of knowing this.  It does hurt seeing her in this condition and knowing the reasons she is like this.  The tears I do shed are from very good memories of her and what she meant to me.  Very little regret.  I owe it to her to be here everyday.  I saw my father a day or two before he passed away at the nursing home.  I am actually glad I was not there when he had the heart attack.   The last time HE saw ME he heard me tell him that  I love him. I still have the phone message he left me telling me the same.

With the both of them I was blessed.

Day 15

Today is Friday, January 11, and this makes day 15 that my mother has been in hospice care.

Yesterday the doctor called me to let me know Mom was doing poorly.   Her blood pressure and temperature are low.   She is still not communicating or eating.  She wanted to prepare the family.  According to her she may last hours or maybe days.

Here's the deal.  Mom has had low temperature and low blood pressure since she was hospitalized last month.  They haven't been able to take either whole she has been here at Calvary.  Not doubting my mother is going to die but I think because the staff is different each day the person on yesterday became alarmed by the temperature and blood pressure.   I mean she may still pass on within the next few days.   She actually looked better the last two days than she has all week.  Go figure.  I am with her now and she is still non responsive but apparently comfortable.

One of the only few bright spots to my current situation.....I am writing more. I still do not have organized thoughts but I am writing.

DAY 12

Today is day 12 of my mother being in Calvary Hospital in the Bronx.

I don't have to say this but it is HARD coming up here to see her.  Not physically, but emotionally. Even though she is supposed to be stable for now I never know when I am going to arrive in time to see the doctors working on her.

Each day she gets less and less responsive.  A week ago she would move her head at the sound of my voice.  She isn't doing that now.  She is still responding to the music I play her.

Emotionally I am dealing.  I am torn between being happy to at least be able to look at her and wanting her to go to that next plane to avoid not seeing her the way she was. Not hastening death but also not prolonging any suffering.  Right now there is no quality of life.  I am not ready for funeral services but I am not happy having a mother in physical shell only.

From what I gather Mom is going through two things.  One is the leg infection with ties to the flesh eating bacteria and the other is apparent late stage dementia.  The late stages of that disease were probably accelerated by the leg infection which is severe and in her joints.

Day 11

I am writing this from home and not from my laptop.
Even though Mom was stable yesterday during my visit I was still a little disappointed.   She wasn't as responsive as she was the past two days.    I have gotten used to her slowly responding to my voice even though she won't or can't say anything. Sunday she wasn't as well.  As I wrote yesterday though her vitals were normal.
Whike I was there I checked with the nurse on Mom's blood pressure and temperature,  which were low.  Mom is getting fluid so I inquired about the output.  That was normal.   I readjusted her bed to have her head raised.  Today I will double check her I.V. port to make sure it is changed according to schedule and the oxygen assistance to see if it isn't too dry.  I had the television adjusted because there was no volume.   Calvary is doing a great job,  but I just wanted to make sure she was really comfortable.
The staff at Calvary is friendly, polite, attentive and very professional so far.  I have not been disappointed by them or by Einstein.
I want to see Mom today but I felt tired when I got home last night.  I may give myself a break today.  I have some personal business I need to take care of.
Emotionally,  this is slowly taking a toll.  I get no thrill watching my mother like this.  There are so many mixed emotions that I am feeling.    On one hand this is clearly my mother, the lady who gave birth to me.  On the other hand, in a lot of ways Mom "left" years ago.  Her smile is still there as well as some of her ways.  I don't want to see her go, but I don't want to see her like this and that makes me feel like I am ready to see her go and not suffer.  No one defined emotion.

Day 10

I visit Mom here not because I want to but because I have to.  I absolutely hate seeing her looking like this.

She had a couple of good days where she responded to me with head movements.  Today not as much.  Some family came by to see her and to pray for her.

Overall she is still stable.  Blood pressure and temperature are low.  No fever.

Emptying my phone III

Philadelphia 12/2018

Emptying my phone

7th Avenue in Manhattan

Emptying my phone

Strictly cell phone pics.  I can't find my memory card for the camera.

This is Rockefeller Center

JOURNAL ENTRY #114 Watching Death

I missed visiting Mom Wednesday but I am here today.  No change.  She is still stable.  Not good because she is still not eating or speaking.  I am not certain if this is the last stage of dementia or if the infection has gone to her mind.    It could also be her giving up.  The nurse tried to feed her and Mom clamped down and would not let her place anything in her mouth. I think she knows nothing can be done for her.  Right now she is listening to my Sam Cooke playlist.  She seems a little more alert but still no response when I talk to her.

Mom is still getting IV fluids.