In Loving Memory
Leo Richard Baroody
August 10, 1937 – January 13, 2016
How does one cope with the loss of a loved one? How do you get past the ache in your heart, or the skip of the heart that reminds you, day after day, that your loved one is not coming back? In January, I lost my father. So far, it has been the absolute WORST feeling I have ever felt in my life. In the days and months preceding his passing, I tried hard to prepare myself. Talk about a fail of EPIC proportions.
October 2015. My dad was diagnosed with Stage 4 Metastasized Kidney Cancer. Metastasized means the cancer has spread to other areas. After various blood tests, CT scans, ultrasounds and MRI’s, the doctors determined that it had spread to his lungs. What we didn’t know, and didn’t want to know, was how much time he had left. We didn’t want an expiration date put on him. Human life shouldn’t come with an expiration date.
Being 78 years old, and having been through so much already, he and my mother decided to not pursue any kind of invasive treatments. They decided, together, to simply try to enjoy the time that we had left together. Mom decided that they were going to get out EVERY day, even if just to go for a drive. They took trips to Busch Gardens, went to dinner, visited with family and friends, and spent a few hours here and there at our little ranch. Dad LOVED to watch the kids on their horses.
I will never understand how, just a couple of months prior to October, he could have scans of his kidneys that were clear, and by October he had a very aggressive tumor on the kidney that was the size of a grapefruit. Nor, that it had spread so quickly to the lungs. His kidney function at the time, had decreased to 30%, and the doctors said that if it decreased to 20% they would recommend dialysis. Of course, with their decision to decline anything further that would be invasive, that would be declined. There was also talk of a possible kidney removal, but he wasn’t a candidate for that surgery and again, would have declined that surgery as well.
October passed by into November, and he was still feeling pretty good. We had gotten him a lift chair, hospice was called in and they were making weekly visits a part of the routine. That worked well for a couple of weeks but we quickly found out that he was spending more and more time in the chair, even through the night, and we decided it was time for a hospital bed. At first, hospice seemed to be a great thing, but they weren’t much needed, except for guidance to change medications or to bring in equipment THEY felt might be needed.
November and December, while seemingly going downhill a bit, Dad was still driving and doing many of his day to day tasks. With kidney function so decreased, his body began to retain fluid. Even on fluid pills, the body retained so much that it would seep from his legs. His legs would be painful to touch and constantly wet. By Christmas, he had weakened a great deal, and you could tell that he was sick. He was still only taking a single pain pill at night, as he didn’t want to feel loopy. You could often tell that he was in pain, but fighting it and internally counting down until he could take something and go to sleep. He fought because he didn’t want to miss precious time with us or his grand babies.
We made a big deal about Christmas because we knew it could be his last, yet we didn’t want to admit it. Talk about yet another EPIC fail on my part though. I had ordered a dinner package from Publix that included a turkey. We had set everything in a box on the floor as we were packing everything in the car to head down to Dad’s, and came back inside to find that my female bully had EATEN our turkey! It made for a good laugh that day, but we ended up ordering Chinese food for our Christmas dinner, ever so thankful that at least they were open for business! We felt like the family in the movie “A Christmas Story”. You know, the one where Ralphie wants a bb gun and gets told “You’ll shoot your eye out!” Yes, THAT was us.
Christmas passed quite uneventfully, and Dad continued to worsen with each passing day. He had his good days and his bad ones but by this time, he was unsteady on his feet and was using a walker to get around the house. Getting up and down, in and out of chairs was difficult and often painful for him. Mom stopped being able to get him in the truck for outings, because it was so hard to get him in and out of the truck alone, and he’d fallen once getting out. His legs were so weak, it was hard for him to pick them up to put them in the truck, and when he’d try to get out, they would fold under him. He had fallen in the house, and a couple of times outside already. The last fall, off the steps going inside, made it abundantly clear that we needed to keep a closer eye on him. With each passing day and the new year approaching, it was our one hope and wish that he made it through New Year’s. It would be our Christmas miracle.
Sometime around the first of January, Dad and I were sitting outside and we ended up having “THAT” talk. The one I had been dreading, but knew it was coming. He told me that he didn’t think he’d be around much longer. Knowing the facts in your head and heart DO NOT make it any easier to face. I heard his voice falter, and did the only thing I could do at the time. I crawled into his lap, wrapped my arms around his neck and clung to him. As selfish as this sounds, I bawled like a baby and told him that I wasn’t ready to let him go yet. There were so many things that I didn’t want him to miss. His grandkids needed him longer. It wasn’t fair. My youngest is only 3. She’d only had him for 3 years. I was so afraid that she would forget him.
My Dad was my best friend. That friend that I called when I got out of bed in the morning to say good morning. The one that would come and pick me and the kids up for lunch, and we’d sit and people watch while we ate our lunch in the truck. The one that would hold me when I was scared, or sad, or needed to just talk through the rough or funny things in life. He’d helped me through more panic attacks than I cared to admit, just like I’d done for him years ago. I’d always found that a single hug from him could wipe away any fear, any pain or any trouble that I may have faced. I was so not ready to lose him.
That same weekend, a very dear and long-time friend of Dad’s came to visit for a week. He was so excited and looking forward to her coming. They picked her up at the airport and seeing her really seemed to lift his spirits. That week they took a few outings, I took my kids down to visit a few times, and he genuinely LOOKED better. He’d had a fantastic week. She was such a tremendous help to Mom that week. As it grew closer to her departure, she began to rethink going home yet, and Mom tells me that he’d asked her to stay longer. He told her that when she went home, he was going to die. I truly feel that one knows, when it’s their time, that they will be departing from this world. I fully believe that he knew.
His dear friend went home, I believe, on Friday. I went down to visit Friday evening, and again on Saturday. Mom and I had spoken on both days about me coming to stay with her overnights, at least a few nights a week, to help her care for him. Mom declined for the time being, saying that she would let me know when it got to that point. He was doing fairly well, and I wasn’t needed round the clock yet.
I am going to digress for a moment, because I want to point out a few facts that I really think are important at this point.
- Hospice took on my Dad’s case in mid to late October. The hospice doctors took over his medical treatment, as well as fulfilling his prescriptions, etc. On the couple of rare occasions where a question arose or he started having pain, they would prescribe the meds and either hand deliver them or mail them. They made sure that we had a “comfort pack” that was there for when “that time” came.
- Not ONCE during the time frame from October through the first week of January did they spend more than 30-60 minutes with them. Up until that first week of January, the majority of my Dad’s care rested in the hands of my mother, who also worked 40 hours a week from home. She cooked, she cleaned, she saw to his every need. She had little help, and asked for none. She accepted it when it was offered.
- Hospice made no special trips out to check on him – more just random phone calls and a check-up at scheduled intervals where they stayed no longer than a few moments at a time.
- The last week, Monday January 11th, they had offered to send someone out to give him a bah. The CNA never arrived. Had we waited, he’d have never gotten a bath that day.
To continue where I left off, I left that weekend to head back home, feeling as though we still had more time. We had no indication that this would be his last weekend. I had promised to bring him out to the ranch the following weekend to watch the kids ride and see the horses. We never EVER expected what was to come.
Mom awoke the next morning, (Monday, January 11th) to Dad standing in the kitchen at the sink. He wasn’t making sense, as he’d asked a couple of times that morning, if she was going to go up to the Unemployment Office to sign up for her unemployment. She reminded him that she was working, and didn’t need to go in for unemployment. Not long after giving him his morning medications, she went to work in her office. He hadn’t eaten, as he’d said he wasn’t hungry. That wasn’t unusual, as his appetite had decrease dramatically over the last couple of months.
Around 10 am, Mom called me and told me I’d better come; Dad was acting strange and was for the most part, unresponsive. He was barely communicating, and when he did, it was incomprehensible. I raced to grab my son from school, and we made a mad dash to the house, an hour away. Little did I know that this was to be the beginning of the end. We kept an eye on him for a couple hours, he was outside at that point and had fallen asleep in the chair. Something he did regularly was sit on the front porch watching passersby. When he awoke, I helped him back inside and tried to get him to have some lunch and something to drink. I was hoping maybe it was just his blood sugar, and that after he had something to eat he’d come around. That wasn’t the case, and by about 3:30 he was back in his hospital bed. He was quite fussy and couldn’t get comfortable. He was very unsteady so we tried to keep him in bed. Sometime that afternoon, we called Hospice to let them know the situation and they told us to get out the comfort pack and give him the Haldol and some of the morphine to help keep him comfortable and help to settle him. The Haldol made him very sleepy. He was started on a small dosage of the that every 4 hours, and .25 of morphine every 2 hours. The Haldol was to help decrease the fussiness and keep him calm. The morphine was for the pain and discomfort.
The Haldol lasted that first night, for about 3 hours at a stretch. I could tell when it would start to wear off, as he would start trying to pull himself to sitting on the bed, and trying to get up out of bed. He would get very restless. When we called, concerned, they assured us it was probably just a “bad spell” and to continue the Haldol and morphine as suggested. I stayed awake, caring for him through the night. Every 2 and 4 hours, I’d make sure he had his medication. Every 3 hours, I’d help him to lay back down, and help him to get his legs back up into the bed. This usually lasted a few minutes, and he’d be right back up trying to get out of bed. This would go on for about an hour, usually until I was able to get him his Haldol. Then within a few minutes, he would settle and go back to sleep. Unfortunately, because my Dad was a large man (we called him our gentle giant), the last time I would need to get him back into bed, I was so exhausted I would have to wake Mom up to help me. He had struggled so much trying to get out of bed, that he was so far down in the bed he couldn’t stretch out so we would need to help adjust his positioning in the bed so his head could reach the pillow. It took all that the two of us had to get him pulled up in bed. This usually entailed laying the bed flat, each of us grabbing him under the arms and lifting/sliding him to the top of the bed. After we’d get him situated and comfortable, he would dose off, and I would send Mom back to bed. I assured her that if we needed her, I would come get her.
Morning arrived on Tuesday, and Mom decided she’d best take the day off from work. Things hadn’t gotten any better for Dad through the night and Mom wanted to be sure that she was right there in case he needed her, or I needed to sleep.
Here is where things get a bit fuzzy, so please bear with me and forgive me. At this point, I was 36 hours with no sleep and beyond weary. The series of events at this point in time, may be a bit jumbled, but I will do my best to get it out, as I recall them.
About 7 am, I called my Sister-In-Law to let her know that they may want to come over. Dad was still for the most part, not communicating. I made calls to the rest of the family in the immediate area, and they came as they were able. I still had not slept since the broken night’s sleep on Sunday night. I was worried and tired, but wasn’t going to miss a moment of time with my Dad. I continued to give him his regular doses of Haldol and Morphine to keep him comfortable.
Twice that day, we’d needed to change is bedding and his pajamas due to his legs weeping from so much fluid build-up, and not being able to get out of bed. I took those opportunities to talk to him and to encourage him to help assist us in rolling him from side to side. I know how much it had to have hurt him to be on his back and rolling to either side, and tried to make it as easy as possible on him. Each time we would need to roll him, I would tell him “Daddy, I need you to roll towards me and give me a big hug.” I would grab across and behind his back to support him and help him to roll. He would wrap his big arms around me and hold tight. It took all I could do to hold back the wave of tears that would flood to my eyes each time, but I took every opportunity I could to hold him. It was during those times when we’d have to move or reposition him that he’d be the most lucid. I would tell him how much I loved him as I was holding him, and his arms would tighten around me and he’d tell me I love you when he was able.
I don’t know exactly when it was that day, that I realized that we were so close to losing him; he was going downhill so quickly. I could physically see it. He hadn’t eaten anything since Sunday night, and hadn’t had much more than a couple of sips of water or juice since Monday, as hard as we’d tried. I kept moistening his lips and tongue by dripping little amounts into his mouth and put chapstick on his lips, but that was all he was able to take at a time. We continued on the prior days’ routine with Haldol and morphine for most of the day. Family filtered in and out throughout the afternoon. By 4 pm, we realized that we didn’t have enough of the Haldol OR morphine to make it through the night. We placed a call to Hospice and they told us that they would get it ordered and over to us. By 8:30, we still had not heard from, or seen anyone with the meds, so we again called and had to leave a message with their calling service. I had to wait for a call back from the nurse. When she finally called me back at 9, they told us that someone would be bringing it out the next morning. I got ANGRY and told her we didn’t have enough to even make it through till 11 pm, and that they NEEDED to get some to us that night. I couldn’t BELIEVE what was happening. She asked if we could pick it up, and that she would call in the prescriptions for both to the CVS that was open all night. Mom, who hadn’t slept much the night before either, and was already beside herself with worry and stress over Dad’s condition, had to drive at 9:30 at night to pick up the medicine that would keep my father comfortable through his last hours. We’re lucky that she made it back without an accident, across town and back, driving through tears.
As the night progressed the Haldol wasn’t even lasting 2 hours and he was getting more and more agitated and uncomfortable. Even in his weakened condition, the pain or discomfort was enough that he was constantly tossing and turning, and trying to pull himself out of bed to ease the pain or help him to breath. By midnight, it became clear that rest was not to be had. Between me giving meds, putting Dad back into bed, changing soiled bed sheets and chux pads, rolling him and holding him, it was the beginning of another very long night. By about 3 am, I had to wake Mom again. He had dropped his legs off the bed to the point I was afraid he was going to slide completely out, and the Haldol didn’t work for much more than an hour. The morphine was wearing off quickly as well, and we feared that the pain was increasing or he was struggling to breath.
We made the call to hospice again, because at this point, we were both exhausted running on 48 hours with no sleep and Dad was NOT doing well. His breathing pattern had changed; his respirations decreased and sounded like he was fighting for every breath. We got a return phone call at 4:30, telling us we could increase the Haldol to 10-20 mg, and give another ½ of the syringe of morphine. We were up to 1.5 milliliters of morphine and 20 mg of Haldol. The nurse that had called back said they couldn’t send anyone over until after the shift change at 8 am as they were short staffed, but they would have someone come out after the morning meeting.
Fast forward 4 hours to 8:30 am. The nurse calls to let us know that they were now having a meeting, and wouldn’t be able to make it until approximately 10. I gave her an update on his breathing, and she proceeded to tell me (OVER THE PHONE) that he was in the “transition” and it probably wouldn’t be much longer. She informed me that under “normal circumstances”, this would be the time they would normally bring the patient into the center, but he was too far into the transition and likely wouldn’t make it through transport. I had already called the family back to let them know that I believed he would be leaving us that day. My husband and oldest daughter had left early that morning to drive the hour to our place to feed our horses and the rest of the animals. Around 11 it was again time for his meds, and wouldn’t you know, that’s when the Hospice nurses finally decided to make their appearance. One sat in the kitchen, the other in a chair behind me. Mom was so furious, she couldn’t and wouldn’t even look at them. Neither of the nurses said much. I prepared his syringes with his Haldol and morphine, as he was seeming to fight so hard to breath and he was restless. I gave him his dosage headed back to the kitchen to put everything away until his next dose.
About half an hour later, the head nurse saw him still struggling, and decided it would be okay to give him another full syringe of morphine. My heart broken, and fearing that I was pushing him over the edge, I asked the rest of the family if they were okay with me giving it so close to the first dose. Under the circumstances, it was unanimous and I did give him the second dose. He seemed to relax shortly after; however, his respirations were slowed so much we knew he was just holding on. I went outside to call my husband and let him know that they needed to get there quickly. We knew that while we sat waiting for the rest of my family to arrive that he was fading, but what I am about to tell you really rocked me to the core.
One of the nurses turned to look at my mother, and actually asked “What is he waiting for?” I was dumbfounded and momentarily speechless. It seemed such a cruel question, I truly didn’t believe what I’d heard. Mom and I connected with a glance and I was able to gather my strength and contain my anger before responding with “His baby.” My oldest daughter, and my father’s pride and joy, had not arrived yet to say goodbye.
Shortly after noon, my husband and daughter arrived, and Sis (my daughter) came in to sit with her papa and hold his hand. My husband came to my side, and we all held his hand and one at a time, we each bent down to whisper in his ear and let him know that it was okay to go. We were all together, and we’d be okay. We knew that he’d fought hard, and it was time to let go. I saw to the side of me, his favorite hat sitting on the lamp where he’d placed it just that Sunday before. I know I was in panic mode by that time, but I grabbed his hat and placed it on his head. I announced quietly that he couldn’t leave without his hat on. He’d never walked out the door without it, and he wasn’t going to now.
At exactly 12:15 pm on January 13, 2016 with all of us holding him, my Dad took his final breath.
I am sure that many of you are asking WHY I am sharing such a personal and heartbreaking story, and I am here now to tell you why.
- First, because for more than 4 months now, I have suffered in silence; very few knowing how I truly feel. I am suffering from Survivors Remorse. For a long time, I didn’t know there was actually a name for what I was feeling. Every day, I battle with knowing that I was the one who gave him the majority of his care medication. I know that giving him that medicine made him comfortable, and eased his pain and I’m sure his fears… but a larger part of me feels that I am the one that pushed him over the edge. Maybe if I hadn’t started him on the Haldol, he may have come back around. Maybe if I had waited to start it, he wouldn’t have declined so rapidly. Maybe if we had waited, we would’ve seen that it WAS just a bad spell. Maybe if I hadn’t given him that last does as the nurse said, maybe he’d still be here. I know in my heart that I am being irrational, but I can’t seem to get my heart and mind in sync.
- My next reason for telling this story, is because I am hoping that if even one person in our area reads this, maybe they will be a little more prepared and not so quick to put all of their faith and trust in what they’re promised will come from Gulfside Hospice & Pasco Palliative Care. What we experienced using their program, was nothing short of a JOKE. Their famous motto “we’re only a phone call away,” or “We have doctors on around the clock and can be to you within an hour” or any such promise are just empty promises. They were a phone call away round the clock, but when we really needed them the most… 48 hours with no sleep, exhausted and caring for a loved one who was dying… those promises are what we held onto. For NO ONE to show in our time of need? We felt lied to. My mom was given false hope and promises from the beginning, that were never followed through on.
- My last reason for telling our story? We are not the ONLY family who has had a bad experience with Gulfside Hospice, and ours isn’t even the worst! My mom left a review on their Facebook page. (I would like to point out, a review that was NEVER responded to by Gulfside nor even acknowledged.) Another woman, with a loved one using Gulfside, commented on her review and gave another horror story. Mom’s review, and the lady’s story can be found here. Need more? Yet ANOTHER neighbor had an even worse experience with them, while her husband was under the care of Gulfside in their in-house care center. The wife was told that her husband wasn’t dying fast enough and that they needed the bed for someone else. She would need to take him home. Sadly, her husband passed away at home the very next day.
Really, my reasons for this story are simple. Some light needs to be shed on the horrible practices of this company, who promise to be the light at the end of the tunnel for families, but more often than not are the cause of darkness, sorrow and a feeling of betrayal and distrust. Because I have fought with my feelings of guilt and sadness for too long, maybe giving a voice to those we have lost and the families who have been ignored… some changes will occur.
I would love to hear your stories, both good and bad, in regards to hospice in general, as well as Gulfside Hospice patient families. So, if you have had an experience with hospice in your area, or with Gulfside Hospice & Pasco Palliative Care, please tell us your story in the comments below.