There has been a bit of a hiatus from the blog because I’ve been dealing with some unplanned chaos with my dad. I will go into more detail in this post, but the long story short, he was kicked out of his nursing home with nowhere else to go. For those of you who are familiar with Huntington’s disease, you understand that getting someone with Huntington’s disease admitted into a nursing home is no easy task. For those of you who are not familiar with the process, let me do my best to paint the picture. Unfortunately, most nursing homes in the United States are for-profit organizations, which give them the right to deny an individual based solely on their diagnosis. As unfair as it is, they are able to do it and let me tell you, they absolutely do use this power to veto patients. A few years ago, when we realized that my dad would need to be placed into a nursing home, I began making calls. I was woefully unaware of the seemingly insurmountable task that this was going to be, something that should have been so simple, to find my dad a safe place to live. Yet, it took two years of me calling facilities nonstop before one FINALLY said yes. The fact that he had HD made it hard to find a place that would accept him, but being a male Medicaid HD patient made it nearly impossible.
Fast forward to our current situation, 3 years of him living in the one nursing home that finally said ‘Yes’. They have never made it easy for him or us. Every couple of months, I would receive a call from the nursing home that something had happened, my dad was being aggressive, and they sent him to the ER to have him checked for any underlying infections that could be causing this behavior. They would tell me that it wasn’t like him to be aggressive and they wanted to make sure that everything was okay. We would rush to the emergency room to wait, usually not leaving until 3am. Every time we arrived, the doctor treating my dad would pull me aside, confused by the nursing homes decision to send him in for aggression because he had been smiling since he was brought in.
Finally, after arriving for our 3rd ER trip, the doctor pulled me aside, told me he recognized me and knew our situation. He was very upset that the nursing home continued to send my dad to the ER without reason and he told me that he would do everything in his power to get us back to the home as soon as possible. A few hours later, after his blood work came back clear, the psych doctor came to visit us. She was as baffled, if not more, as to why we were there, again because my dad had been smiling the entire time he was there without a single incident. She told me that she would be contacting the nursing home and that she would do everything in her power to get him back into the home as well.
She was true to her word and was able to get him back into the home 3 more times, but the 4th time the nursing home refused his return because ‘they could no longer take care of him’. These words, long before they were actually said, were the words that kept me up at night. For so long, I knew there were coming. The fear and anticipation of not if, but when was ever present and when I finally heard them, I felt as if my world had come crashing down. The helplessness and fear of my dad losing the only home that would take him is something I hope no one ever has to endure.
Even though I knew this day was inevitable, there was no way I could have ever been truly prepared. I knew that the best course of action was to become familiar with our rights so I reached out to his social worker at Washington University. She informed me that he could not be kicked out of the home without 30 days’ notice. She also gave me pretty daunting information letting me know that this is by far the hardest and most challenging part of her job to help placing people with HD in a home. During this time, she advised that we could file an appeal to keep him in the nursing home, but she had only known one person in all of her years as a social worker that won their appeal. One person, in all of her years as a social worker- I knew then the odds were stacked against us even higher than I could have ever imagined.
She told me that my best bet would be to begin the familiar and heartbreaking process of calling around to see if any homes were accepting any male Medicaid HD patients. When I heard those words, it felt like I was taking a kick to the face because I knew the weight of what this meant. I know how bad the hundreds of ‘no, we cannot help your dad’ felt. I know the hopelessness that comes from feeling like you are failing someone who means the world to you. I knew I would be calling for a very long time before we might find someone who would be willing to take him. Never mind the fact that this removes the luxury of making sure the only place that may say ‘yes’ is really the place you want to send your parent. All of these thoughts rattled around my head when I heard these words and my heart sank. What was I going to do? How was I going to get through this, again?
During all of this, my dad was admitted into a full lock down psych ward since the home would not take him back. He was there because they needed to ensure he was not a danger to himself or anyone else. After only a short time, it became clear to everyone in the facility that he was none of these things and was perfectly safe. Before he left the
hospital for the psych ward, the facility had their own social worker present who told me that I could expect him to be in the psych ward for at least six months, maybe longer because he knew how hard it was going to be to find a nursing home that would take an HD patient, let alone a male Medicaid HD patient. When he said those words, I sort of just blacked out- I was completely numb, and all of the questions began running through my head. What do you mean he will be there this long? He would be there for Thanksgiving and the holidays? I couldn’t even acknowledge that thought without having a full blown panic attack. He is my dad and he has HD, but he is not a monster. The psych ward didn’t have TV in the rooms and you couldn’t even visit them in their room to see where they were staying or how they were living. You had to lock all your belongings in a locker on the opposite side of the building before entering and you had to be interviewed to make sure you were stable enough to even visit. It was honestly a place that seemed like a living nightmare to me. They did take very good care of him while he was there, but that didn’t soothe my anxiety of needing to get him out of there as soon as possible.
If I saw you while any of this was going on, I am sure you noticed that I was deflated. I had zero of my normal happy, cheerful glee going on. This was the first time, in a very long time that I felt flat out defeated. I was just in a daze of emotions, broken and crumbled.
However, do not be too sad for me, this is where the story gets better: In my darkest hour, I had an army show up to help find my dad a new home. This crew consisted of my best friends, my incredible husband, and my amazing-in- law’s. We began calling nursing homes, and ended up with a mountain of no’s that was piling up so high we could barely see over the mess. The break in the mess came from my dad’s hospice nurse. You see, he has been on hospice for two years and they have been such a blessing in so many ways. They have always acted as an extra set of eyes for me and this time was no exception. His hospice nurse, who has been personally visiting him for two years, called me to tell me that it was unacceptable for the home to kick him out because he had never shown aggressive tendencies in front of her once. She informed me that, sadly this is what nursing homes do when they do not want to take care of a person anymore. During the call, she also gave me the number of a nursing home that she works with on a regular basis that she considers one of the best facilities in the area. Daily, she gets to witness their level of care and compass for each patient, which far exceeds that of the other homes she works with.
Of course, with experience and the week I had already had, I refused to get excited. She means well, but I do not want to get my hopes up because I was not sure if she told them about his diagnosis or his situation. But then she tells me that not only HAD she told them about his situation and that he had HD, but they had taken care of HD patients before and they would love to meet him. Again, I refused to let myself get my hopes up, considering how many doors had been slammed in my face thus far, but I took the chance and drove to the home. His Hospice nurse was not only at the facility, but she was able to tell them that she knew him on personal level and that the accusations being levied against him by the previous nursing home were completely untrue.
This place is a hidden gem in the world of nursing homes. All of the nurses had been there for a number of years and you could tell they actually enjoyed their jobs. Unlike nearly every other home, including the one my dad was kicked out of that had a revolving door of people who knew they would not work there next week so they did not care. The administrator herself had taken care of HD patients and was familiar with the disease. She also made it clear that she would not want, need, or allow them to send him, or any patient, to the ER all the time to get out of taking care of him.
By the end of the meeting the administrator and I were hugging and crying… Guess what? They were able to take him. WOW!!!!!!!!!!!! It is crazy to me; it really feels like this was meant to be. The whole time in the other home, things kept getting progressively worse. From the latest ER visit on, the situation felt like it was spiraling out of control, but I kept telling myself to trust what the universe was trying to tell me and follow its lead. Maybe he was being mistreated at the previous nursing home and maybe this whole situation got him out of something he was not able to communicate to me was happening. All I know is that this is obviously happening for a reason.
The best part of all of this is that I got him into the nursing home in only one week’s time and got him there before Thanksgiving!! I think the best and most important thing to come from all of this occurred about two weeks after my dad had been in the new home. He told me that he was really happy and he liked it very much. I am not sure you can understand the significance of those words, but to me, it means that this chaos that was my life, and the life of those around me, for the past few weeks was beyond worth it. All of the feelings of defeat were not for nothing and I am so happy to be able to see that clearly now because even in that moment of defeat, I knew I had to fight regardless of the outcome.
This entire experience has also renewed my faith in myself. It has reminded me that because I am fierce, refuse to take no for an answer, and have an army behind me, I got him in a great place and it was nowhere near the expected six month process. Truthfully, I have no idea how I would have gotten through that, but I cannot and will not dwell on that now. This all happened so fast, but only because of the help of my best friends, dedicated and loving husband, and in-laws you do not want to mess with! I am beyond blessed and lucky to work for my in-laws, who made sure I had the time I needed to take care of my dad. I truly believe that this happened so quickly and was possible because of my army of friends and my in-laws who come together and assemble in full don’t mess with me force!
I wanted to get this post together because I wanted to put out an update on what’s been going on. Hang tight for my next post that is already in the works to discuss the new life-altering Huntington’s disease research finds! I cannot wait to update you on the advancement in the HD world that I am so excited to share! I’ve dreamed of writing this follow up post for as long as I can remember. Stay tuned!