Journal entry 32

I learned last night (night of August 15) in Florida that the fire department had to be called yesterday morning. I was told Mom started screaming a little after 5.  She thought someone was in the room touching her hand. The fire department arrived and got Maureen who was a few doors down.  Thankfully nobody else was in the house so Mom had an apparent bad dream.

It seems like a nightmare but I am keeping my eyes on this.    Dad started having apparent bad dreams just before he was diagnosed with Alzheimer's Disease.  He would wake up near the same time in the morning thinking the apartment was robbed.

Mom does have a history of this though.  I remember years ago she had a dream while I just happened to be in her room.  She stirred and looked at me then screamed.  My hair stood on my head.   She immediately recognized me though and everything was ok.  In my aunt's house it is completely dark in Mom's room.  They have installed a night light.

FAMILY LEAVE and other helpful advice

I may have posted this before in an earlier post but it won't hurt to post it again.  Be familiar with the Family Leave Act, especially  if you have elderly parents you are caring for.  I was totally unaware of my rights under this act. 

A lot of people, particularly nowadays frown on unions.  My Union (Local 1917) saved my job.  There were a few unfair practices going on at my job and the Union helped me.

Today wasn't a bad day.  Mom was in good health and I got some rest.  I did some reflecting today though.

I have been a caregiver officially since roughly 2000 when I decided to move back with my Dad.  I was concerned he wasn't eating and taking care of himself.  I was living in a studio in Harlem at the time and my aunt suggested that I move back with him.  I was visiting him a couple of times a week anyway.  At the very least it would save me money.

Late 2007 he started showing signs of dementia.  Mid-2008 he was diagnosed with Alzheimer's Disease.

I started having problems with work.  Legal problems I won't get into in this particular post, but trust me I will discuss it because if even one person reads this, my story could help you, especially if you are a caregiver.  If only one person reads this particular post this story may help you as well.  Support groups are fine but when it comes to caregiving and especially caring for someone with dementia and Alzheimer's TRY to have an outline for a FEW possible plans.  Most of the time you are on your own with your mission.  My point:  Soon after Dad had his diagnosis I was facing serious problems at work.  If not for my Union I would have lost my job to illegal behavior from my job.  They were actively and aggressively  pursuing my termination.  At the same time I was faced with the task of being the sole person to care for my father.  He wasn't to the point of wandering in the street...yet, however I had great concerns about leaving him at home alone.  I thought it was time to find a new job.  IU was willing to leave my full time job with the federal government and get a part time gig.  The only concerns were getting a job with health benefits and the hours I would be there.  I reached out to a friend who was well connected in hopes that he would send me in the right direction. I wasn't necessarily looking for HIM to give me a job or hook me up, but I hoped he could point me in the right direction.  Instead I got a brief lecture from someone younger that me in the need to have a five year plan for the future.  "Really?", I thought.  Who can plan for five years with an Alzheimer's patient?  My friend had the best of intentions but he also was a married man with children.  His only concern was for them.  He didn't live alone with an elderly patient with a neurological disease.

My point (I guess) is, you will have well intentioned friends but the bottom line is YOU have to map out a flexible plan for the future.  I chose to try bartending.  I was ready to take the classes and move on.  I was also ready to move the both of us to Florida is absolutely necessary.

Thankfully, Dad improved to where I didn't have to worry as much when I went to work.  Well I didn't have to worry about part time employment as much.  There were other issue, but I didn't have to leave my full time job.  A couple of years later though the issue would resurface when Dad broke his arm.  Unfortunately though he passed away in the nursing home during his rehab.

I guess for now this is a rant.  I had a flashback to that conversation with a friend and I just wanted to rant a bit.  I guess the only real thing you get from my rant is, if you are in a situation where you are giving advice, be compassionate and be a good listener.  Try and see what the person you are listening to actually needs.

Thoughts for the future

The future scares me.  Growing sentiment, particularly by conservatives shows a trend towards selfishness.  I look at Florida and the misery.  Some of those people can't get health care.  I look at the state of health of senior citizens and I question if it is even worth staying alive until you are 80.  What good is it if you need someone helping you wipe your behind?  If I have to pay someone to get me out of bed is it worth it?  To make matters worse the average person can't afford the care needed when they get to their golden years.  As with the homeless, the elderly are apparently not worth public care.  Is it worth it to get old in the United States?

Journal entry 31

I have been mentally tired the past few days and I am definitely not happy.   I am involved with too many things and it is hard to complete a focus much less complete a task.
July was dedicated to Mom.  I have spent a good deal of time with her this month.   I also spent a lot of time worrying about the situation in Florida concerning her.  She and my aunt are short one home attendant.   The second attendant has been looking for other work hopefully gaining health insurance.   It's difficult handling their affairs and even more difficult when you are doing it long distance.

Criminilzation of Homelessness

I came across a couple of interesting articles regarding homelessness and basically how it is being criminalized.  Article makse a pretty good point stating it is less expensive giving a person a place to stay along with certain social services as opposed to tossing them in jail.  You have to wonder the point in jailing someone just because they are poor.

http://america.aljazeera.com/opinions/2014/7/the-growing-criminalizationofhomelessness.html



http://nationalhomeless.org/issues/civil-rights/

Spoke to Mom early today (around 1:30).  She was alert and energetic.  I am thankful.  I call sometimes later and she sometimes dozes off before the call.  The home attendant is concerned about the sleepiness during the day.  Not that I am not concerned but she is 86 years old.  What is the worst that will happen?