SILENCE IS NOT GOLDEN

You may have noticed that I have been strangely silent in re: to blogging for the last 7-8 months.  My motto seemed to change to Silence is Golden because I was so overwhelmed by the end of the day  taking care of my dad as he progressed in his Alzheimers, that I simply craved total silence.  Words simply wouldn’t come to me to describe the emotional and mental agony and the physical exhaustion I felt.

Its time though to open up about the experience.  There are too many elements to address in this blog.  Someday I will write a humorous and touching blog about the experience because frankly the phrase “if you don’t laugh, you’ll cry” became a daily thing. 

Now though is the time to speak out about the total lack of respect and dignity afforded to my dad in the facilities he has been in since I made the decision to leave his home, turn over his care to “so called” professionals.  This decision will probably continue to haunt me for years….could I have just toughened up and stuck it out, did I expect too much in regard to help with my dad, did I do more harm than good by preventing him from having to leave his home in June when maybe if he had gone to assisted living then he would have not had a hard time adjusting?  Did I do enough?  Is it my fault that he is experiencing the shitty care because I was simply unwilling to put my life and health on hold for a few more months.  My conscience wrestles daily with the guilt, the regret, the sadness, the difficult choices I had to make.  Someday, when there is time, I will work on healing from the experience.  For now, I have become a ranting, raging advocate for the decent treatment of individuals our society considers throw-aways.

Everyone that is hospitalized or in a nursing home or even an assisted living apartment more than likely has health issues.  In some way, those people are vulnerable.  In my dad’s case he has advanced Alzheimers disease.  On some days, he is somewhat lucid.  He may carry on a conversation with you that makes sense.  More than likely it is about something that happened years ago.  Short term memory is pretty much gone.  He may ask the same question over and over.  There were days when I thought I just needed to record myself answering the same thing over and over to save my voice.  Seriously there were days that I was hoarse by the end of the day simply because the questions were non-stop and repetitive.  For an Alzheimers patient, there seems to be a need to continually orient themselves on what comes next.  In some ways its comparable to a 2 year old asking why over and over again.  It’s not just to hear themselves speak.

In the last month I have witnessed the most appalling behavior by healthcare professionals.  These are people who are trained, who are paid, who have CHOSEN to be in a profession where they will be faced with the day to day challenge of dealing with individuals who for the most part, through no fault of their own are NEEDY.  If this is not something they want to do, then I suggest they find another profession.  One where they don’t need patience and compassion and basic human kindness. 

My dad cannot ask for what he needs.  Yet he can tell you if you ask him what he needs.  Every single person that came into his room to care for him while in the hospital with his broken hip, awaiting surgery was told this.  I made it a point to tell them that he had Alzheimers, just in case they hadn’t read his chart.  I made it a point to tell them what he was and wasn’t capable of.   I did this for their benefit and for his.  Yet over and over, the “professionals” failed to meet the most basic level of care for him simply because they didn’t take the time or didn’t care to respect his ability.

One particular aide stands out.  Deshonte will forever be etched in my memory for how rudely he treated my dad who was in pain, groggy from pain medications, lethargic from lack of nutrition and hydration and confused about everything from where he was, why he was there, who are these strange people, why can’t I move my body.  I pushed the call button because my dad need to pee.  Simple request.  Deshonte waltzed into the room, whipped back the covers, SHOVED the plastic urinal on my dad genitals and said “hurry up old man, I got other things to do”.  Is it any wonder that my dad couldn’t go after that treatment.  Deshonte after waiting about 15 seconds said to me “if he goes push the button, I don’t have all day”.  This attitude was repeated in various ways by various “professionals” frequently in the days that followed.    When I asked the nurse Angela if they checked on him regularly to make sure he was ok she said He’s no different in here than anyone else.  HE can push the call button if he needs if he wants us.”  To which I responded, No he can’t. He has alzheimers.  He doesn’t understand the concept of call button.  What he does respond to is a human being coming in occasionally and saying Mr. LaFave do you hurt, are you hungry, do you need to go to the bathroom, can I fluff you pillow for you?  Her response was  “ again,  we have other patients to deal with.  He’s one of many.  “ 

Is it any wonder that I wore myself out and exacerbated my own health issues sitting hours on end by his bedside at the hospital to make sure he was okay?  They would bring his tray of food, place it on the tray table which more often than not they had pushed to the wall away from his bed so they could do vitals, and expect him to eat.  He was immobile from surgery.  He was not able to reach the tray.  If he had been able to he was not strong enough or alert enough to open cartons of milk, or cut up pork chops, or put jelly on his toast.  Was it too much to ask that his food be placed where he could reach it and the aide who delivered it ask him if he needed help getting  the cartons opened, the meat cut up etc?  Apparently it was. 

There were a couple of exceptions to his stay at the hospital.  The housekeeper Margaret who came in and would talk to him about his family while she cleaned his room, call him Mr. Frenchy out of respect, and even dial the phone for him when he asked if she would call his daughter.  The aide Susanna who told me her grandparent had died of Alzheimers was exeptional. She didn’t argue with him about the nonsensical observations he made about things.  When he told her the sprinkler on the ceiling was the air conditioner blowing cold air on him, she pretended to adjust it for him.  When he told her he was 203 when she asked how old he was she didn’t’ argue…She said, I bet you’ve seen a lot in your lifetime.  God bless these caring individuals who took time to be kind. 

I was so happy to see him leave that place and get him to a facility where he could begin to heal and learn to use his leg again so that he could go “home”, his room at the memory unit where he was beginning to feel comfortable.  Little did I know the horrors in store at the facility I moved him too.  That is a whole other blog.  Suffice it to say that I have had to do the work of the staff, that I have had to intervene and advocate for not just his care, but for the helpless 81 year old stroke patient in the bed next to his.  I have emptied not only my dad’s urninal but a strangers bedpan. 

Years ago I was a Marketing Manager for a company that did Mystery shopping.  We hired and sent people into stores to see how the service was, how the food was, etc.  Kind of a front runner to Undercover Boss television show.  Never in my wildest imagination did I think that there should be mystery shoppers for nursing homes and hospitals.  You would think in these places, where the most vulnerable of people have to be, that the companies would take extra care to assure that the staff they had were of good quality and had the skills and the emotional maturity to take care of people.  I have had a rude awakening and become very cynical in the last few weeks.

For my dad, the battle back to health has just begun.  For me, the battle to assure that my dad is treated like a human being is ongoing.  I am saddened and appalled everyday as I witness up close and personal the many abuses that are happening.  My heart breaks for the sick and elderly in these places who have no one to watch over them, to make sure they are being treated with dignity.  I am sure there are great place.  I know there are.  I have worked in the Healthcare industry for 10 plus years.  I have seen the good, the bad and the ugly.  I know some of the most compassionate, selfless nurses and aides there are.  Many of them are my friends.  Many of them are standing by me during this time of great stress, suggesting, helping, supporting, praying and caring form me as I care for him. 

When this is done, when he is in a place where he feels loved and cared for, I will find the energy to deal with the complaint process, to make the necessary calls and fill out the forms and go to the people in charge who can effect change.  It will be a drop in the bucket.  But it’s a start.  I intend to someday use my experience to help others through this.

No one should have to fight as hard as we have to get just basic kindness and care for my dad.   The fight has left me a different person.  Joy and laughter for now are a thing of the past.  My heart is heavy and burdened.  I feel overwhelmed and saddened by this vicious disease that is robbing someone I love of the things we take for granted….our memory, our logic, our livelihood.