Tuesday, August 3, 2010

The Care it Takes

Long Beach, California, United-States.Image via Wikipedia
The Care it Takes to Keep a Quad

Long Beach VA is an acute hospital; my father was not showing any signs of improvement any longer so after 9 months of being in the hospital there off of 7th street in Long Beach, he had to find a place to live.

Not only did he have to find location, he had to find a caregiver that went with the home, or a facility. When you are a quad you have more care then most are capable of doing, not from a lack of love, or want to help, just the simple nature in what you have to do to help a quad is very personal and crosses a lot of boundaries many can’t. Bowl care alone is so very intense and past the realm of everyday personal space, you have to be a special person to perform this two times a day or more every day , seven days a week, four weeks a month, twelve months a year, year after year. Bathing, coming, grooming, cleaning, feeding, it takes a toll on those with even the biggest hearts and loose personal space standards.

So where do you turn when the options are minimal due to finances, insurance and good care? There are a lot of opinions out there, but little heartfelt resources, not unless you have major bucks to spend at minimum $5,000 a month.

Obviously the best options are in home care based, but he did not have a home, not one suitable for his care. My mother and he were in the process of finalizing their divorce months prior to his transformation. Any option for him to move into a home would cost more than there was income, so he had to look elsewhere.

Eventually after speaking with many care facilities he met Roselle. Soon all of us met Roselle, my mother, my brother and I. We all fell in love with her quite quick and she offered a great package for my father. She had a converted home very close to the VA there in Long Beach so my father would be able to maintain his physical therapy and medical treatment.

The home was decent; it had 5 bedrooms for the quads one for Roselle and her husband and one extra. The home was modified in all the ways necessary for the men to get the care they needed and have the freedom they wanted. The doorways were all widened, the shower was roll in and all the other necessary intricacies that come with modifying a home for a bunch of wheelchairs rolling about – ramps up to the doorways, roll over molding at every doorway, corner protectors on all the walls to save them from crumbling after the inevitable contact with wheelchairs.

While my father got his own room, the house was small enough that he could never really have any of his own space. Even though there was a decent back yard, great long driveway in the front of the house, it was never space he could call his and you can imagine as a grown individual what that means in terms of your own sanity. He began to talk about moving out on his own and started to research what options he had.

We spoke about it for months and finally after 3 years living with Roselle, he found what he felt was a good caregiver, behind my back and started the move. The first night he was to sleep in the new place I met his first caregiver and hated him right off the bat, his name was Warren.

Living in a small apartment now, only Warren to fend for my dad, he had half if at best the care he was getting with Roselle. Remember, it is not a pleasant or easy job to be a quad’s caregiver, you really have to have a wonderful heart and Warren did not.

He and I discovered first that Warren was stealing from him, but because of my dad’s ever burning desire to live on his own he would deal with it on a case by case issue, it was never a lot, 20 here, 40 there, but after a few months it all added up.

The biggest issues were not the stealing though, they were what I later found out by a heartfelt call my dad made to me in the middle of the night. Warren would leave my father for hours at a time, luckily at least to my knowledge, never more than half a day, but imagine no abilities to fend for yourself, stuck in a house all alone for a whole day. The thought of it today get’s me to a point of such anger and sadness thinking of my dad like that, stuck in a room staring at a wall, the TV or out the window, alone, hoping someone will come to him, all while I was out playing with my friends, studying for school, living my 20 something life.

My dad phoned me one evening, saying he just wanted to hear my voice. Over the last few years I learned that the phone calls starting out with my dad telling me he just wanted to hear my voice, I knew he was having his down moments. So I would do what I could to get to him as quick as possible. Most of the time it was in only a matter of the drive time to get to him and other’s it took until later that day or next, usually no more than 8 hours.

So this night, I got to him and kept him on the pone until I got there. We talked about just the normal things; he typically wanted to hear what I was doing, rather than dive into his depression. So we talked about the things going on in my life and I drove as fast as I could from my house in Laguna Niguel to Long Beach, the corner of 4th and Elm.

We talked most of the night and just like what had happened so many times before, I stayed with him at his side until he fell asleep. I would do this at Casa Colina, the VA, Roselle’s, and now here. He told me of all the times Warren would leave him, typically every Friday and Saturday night, but any day of the week, my dad was subjected to being left in bed and alone. No one to get him a drink if he was out of water from his camel back left on his chest, help him through a spasm, or just talk with him.  He was just stuck.

Every Friday and Saturday night, Warren would light a cigarette for my dad, put an ash tray under his chin, make sure his water in the camel back was full adjust the lights and the heat/ac (depending on the time of year as Warren was with my father for almost a year) then leave for the night. If anything were to have happened in the building, to the lit cigarette causing a fire, anything, my father would have been left to fend for himself.

It was shortly after we had this talk that we were told the news of Roselle and the quads in her home. There was an electrical fire, no fault of the quads or Roselle; it was faulty construction in the original building of the home that caused the flames. Roselle and her husband were the only two caregivers there that night and were able to get one quad out, but the three other men including Roselle and her husband, lost their lives. She and her husband fought to get the men out but were overtaken by the smoke and then the flames of the fire.

The pain of losing Roselle and the thought of what would have happened had my dad not forced the issue of living on his own, lessened the weight of what was going on with Warren. My dad soon after fired Warren and he and I were told days after he was picked up by the police for warrants out for his arrest.  We were never sure what the warrents were, but it didn't much matter, he was out of our lives now.
My dad stayed in at the apartment there on 4th and Elm and had a series of caregivers over the next year that would take care of him. None of them were ones that I truly appreciated or felt were good to my dad, not because they did not like him, most loved him, he was easy to love, his huge sense of humor, faith in the Lord, and positive attitude, but they were not trained well enough to help him. Some would come in the morning, get him out of bed do his routine, get him in his chair and out the door and then come back at night when he needed to go back to bed. He would be left alone all night until they showed up in the morning again to do the routine all over.

Others did stay and live with him, but were too weird in their own lifestyles to keep around for too long. None would ever steal from him again and all did the best they could for him from their heart and truly did love my dad. I felt somewhat better, but really wished he would move back to a home like what he had with Roselle.

He and I would talk day after day, week after week about this and finally he decided it was time. He was on his own now living in the horrible apartment building off of 4th and Elm for 2 years and he too was getting tired I feel of the miserable help he would get in return for his total freedom – in the most sense of the word you can apply to a quad’s life. That is when he found Nanette.

I loved Nanette right from the start, more so than with Roselle, not because she was better in any way, but because she represented to me piece of mind in my own heart and soul. For two years now I was constantly worried, really worried about my father, not just because he was a quad, but because I was worried about the care he was receiving.

Nanette was great but she did not possess the facility license that Roselle did as that license is expensive, like $30,000 expensive! This is not a license that has shown the quality of the home or the caregivers in the home/facility to be worthy or healthy. It is simply a “DBA” type license or a tax if you will the state has put on these caregivers to get money out of the system. Nanette was however, highly trained and qualified to care for quads. All of her assistants were as well.

The problem this lack of licensing caused was a run from the authority’s type situation. When someone from the licensing department would find that she had not paid the fee’s yet, they would start to investigate, so she would have to move. This kept up for the three years my father was with Nanette.

The care that my father received from Nanette and her assistants was tremendous. She was very caring, very skilled and loved my father. My father just as when he was with Roselle was not just a number, but a family member to these women and their assistants. That is important when you are talking about long term care. There was never a day that went by that my father was not taken care of in the best possible sense of the word.

Unfortunately, it got to a point that it was getting to be too much of a problem to keep moving and avoiding the fee. Nanette reduced her patients to just my father, but that was still no help. So we had to move my father. To buy us some time, as I was told by the VA hospital that my father’s living conditions were going to be reviewed again – that means they would be going after Nanette for housing without the license – I worked with Nanette to get my dad out of there.

We got my dad into a hospital for a mild condition and from there Nanette refused to receive him back into her home. Then I worked on finding him a place to go, consulting many people on the best location, but ultimately we had to make a quick decision. My decision was helped along by a sound word from a woman that works at the hospital in Long Beach (not the VA) that highly recommended Pacific Care Center in Long Beach. She told me her good friends work there and the care is phenomenal.

We made the move. This is a living facility, is state funded and what the state recommends rather than the quality care he was receiving with Nanette. After a short few months it was apparent this was a horrible decision and they had no interest in my father’s health or him as a person. He became just another number very quickly.

Through the course of his stay some major incidents occurred. He was once ignored for over an hour even though he was yelling for help, he was left for ants to eat him, he went un-bathed for days at a time, he received improper bowl care if any at all, he was not properly taken care of with his catheter, and generally not well cared for.

One morning my father called me, he a great deal of pain, pain which I later learned came from being impacted, which is the result of poor bowl care treatment by the staff. He asked me if I could come and see him, these days it was getting more and more that he wanted me near him. By this time my daughter was born, I was working a tremendous amount of hours, so it would go a couple weeks at a time before I was able to see him. I would talk with him all the time, but not be with hm at his side, something we both much prefered.

So I told him I would leave for work early and stop to see him on my way in. I went to hang up but something told me not to. My father, said goodbye and thought he hung up the phone. He was limited on his abilities to manage his phone due to the nature of his injuries, but even more so when he was in pain as that drove up the spasms and spasticity he was experiencing making him terribly tight. So, he laid there yelling for someone to come in and help. The entire ride up to see my father, about an hour, from Rancho Santa Margarita to Torrance, over 60 miles, I heard him begging for help. No one came.

You can imagine the rage I was in when I showed up to the living facility and no one was willing to take on the responsibility of not coming to my father’s aid. They all said they were too busy! WOW! What a shock. I was just forced to remove my father from Nanette’s care, pure and nurturing care because the VA hospital was coming in to investigate and as soon as they discovered the lack of license would have forced my dad into what they considered a licensed facility like Pacific Care Center. After sometime I was able to get him the care he needed that day, but my concerns of the quality of care were highly elevated at that point.

Later on subsequent visits I would discover more and more of the problems that would come up. The poor treatment, the fact they were not rotating him properly, or if they were, they would have found the swarm of ants that had eaten a half inch hole in his left leg and start their work on the right, which also lead tothe conclusion they were not doing his range of motions. Then the fact that he eventually contracted a blood disease from the poor treatment of his bowl care and catheter and was sent to a highly contagious facility which is where he later died, proved that the state cares nothing of patients, just the money from the facilities they are in.
My father died because the mandates of state care. You won’t read this in any news print or media coverage. There was no way to go after anyone, we did not have the funds to start off with, but the impossibility of bringing down such forces is tremendous. The only hope I have for the future is that others will not suffer as my father did. I live with the decisions I helped make with my father which ended his life sooner than expected everyday and it hurts. I am grateful for all the amazing care he received from Roselle and Nanette as well as the other caregivers that gave it their all.  I despise the facility that led to his death and will never forgive myself for not doing more.

Pacific Care should be burned to the ground and their patients removed to a loving facility, one that bathes their patient’s everyday and does not leave urine in all the bathrooms on the floor. The state should allow patients to get the care that they want and from whom they want. If you find yourself in this position, determining how to give the proper care to your loved one, you can’t research the facility enough, and you can’t trust the opinions of others too much.  Most importantly, go with your gut, you will know where there is love and where there isn't.

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