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!
After the passing of my cousin, I needed some time away to regroup and allow myself to heal, which is something I rarely do. I love helping people, and I often jump into things head first without considering or addressing my own feelings.
So, after I spoke with Geno’s immediate family and doing what I could to help them with his sudden passing, I realized that I needed to deal with my own feelings of how I am impacted by this disease.
I do my best to find peace in my efforts, knowing that what I do for HD matters, but this loss still cuts so much deeper.
He was only 36. I am 31. Does this mean there is a possibility that I may not make it to 40? Being at risk for a hereditary disease, especially something as horrific as HD, these questions are always in the back of your mind, but they become much more prevalent when someone you love passes. Especially when that person was taken by the disease.
I do everything humanly possible to avoid going there, down this rabbit hole. But, unfortunately, it is my reality- and some days, I cannot escape it. With each day that has passed, I have slowly begun to tap into some magical inner strength that has allowed me to keep going. Although, Geno’s sudden passing was enough to send me over the edge, it also happened to be in conjunction with my dad’s rapid decline that is getting progressively worse each month.
As any caregiver knows, there is no break- even when things are really bad and you just need to hit the pause button for a second to catch your breath. In our world, there is no pause button. We know that no matter what life throws at us, no matter how bad it gets, we have to hold it together for our loved one because they are depending on us.
Thankfully, my dad must have known how desperately I needed him recently because we got a couple of great laughs. Seeing his face light up with laughter is indescribable. I think the closest I can come to accurately describing it is a level of pure bliss. There is absolutely nothing in the world like it, and there is no better reward for me, as his caregiver. Even though, he can no longer articulate his appreciation, I know with a giant grin from him I am exactly where I am supposed to be doing exactly what I was put on this Earth to do. That is my sunshine and rainbow explosion.
In addition to dealing with my feelings, something very close to what I would consider a miracle occurred. I received a message from a local girl, close to my age, who was getting ready to be tested for Huntington’s Disease. While she was researching some information for her family, she came across my blog on a support group where I post my updates. She explained to me that she had never met anyone who had ever dealt with HD before and she wanted to meet.
During our conversations, we both got chills because of the similarities in our stories. It was pretty eerie. After some more conversation, we finally settled on a day and time to meet for dinner. When we finally met, we both admitted our anxiety about meeting the other person, but ultimately that we were more relieved to talk to someone who truly understood what we have gone through and what we are facing.
This dinner lasted for five hours, all of which we talked nonstop and could have easily talked for another five hours. We parted ways that evening as friends, and met the following week at a support group, which was exactly what we both needed!
Before our official meeting she had already met with the social worker at the Center for Excellence at Washington University and had her blood drawn for the test. The social worker, Stacy was ecstatic that we met and told her I was the best person for her to know through this process. For me, there is no greater compliment, this was pretty much like Gandhi giving me a compliment for being an good human being. You see, I have been working with Stacy for the 10 years that my dad has been going to Washington University. I am very active in the studies and I have been in contact with Stacy with questions or concerns so many times over the years that it would be impossible to count. She has been an angel on Earth who has guided me when I was alone with zero help or information. She was there in a time that I could have easily given up, but she made sure that I knew she was just a call or email away. Her guidance through the years is something for which I am eternally grateful. To hear her tell someone that I am the right person to meet gives me such reassurance that all this struggle is worth it.
To have been allowed the chance to connect with someone who knows what I have been through and is facing the same fate is such a rare occurrence. It is not only rare, but it was such a relief. To discuss certain aspects of my life or HD and they just get what you are saying. It was something that I haven’t ever experienced before. But there I was, sitting at dinner with this wonderful person sharing our experiences and we both wholly understood each other. I do not think I was even aware how gratifying that could be and I also do not think I realized how bad I needed that release.
When I began this blog, my ultimate, and what I thought to be completely far-fetched, goal for my blog was to help one person. That was it, one person. I had no idea it would happen so soon or even at all. The girl I met told me that my blog gave her hope, but also a new way to look at a diagnosis. She stated that she knows that now she has an option to live an exciting life and her perspective had been adjusted because she now understands how much more there is to life. Not only did I help her, she also shared my blog with her husband and her dad, and she said it helped them see through this darkness.
Sometimes in life, we receive hidden blessings and meeting her has been one for me. I did not realize how bad I needed someone who understood. This was just as life altering for me as it was for her. One of the most important things that I want to do with my time is to show people life can be everything you want it to be if you decide to make it that way. She even told me seeing how strong I am through all of this shows her that how you live your life really does make a difference. These words show that I have helped someone find their inner strength and I can barely put into words how that makes me feel, I am beyond cloud 9. What seemed to be an unattainable goal has been met, but little did I know how it was going to make such a significant impact on me…. but I am definitely not stopping here.
Sometimes, when reflecting, I consider why things happen at certain times in our lives. This came to me in a time where I was struggling dearly to find meaning. For whatever reason, it was sent to me. I am grateful because I have been resurrected. I am back and better than ever with that internal fire that is burning bright! Life is such a blessing in so many random ways, open your heart and let them in.
My family is mourning the immense loss of my very young cousin, Geno. This has been very difficult to write because his passing was very sudden and it is so close to all our hearts. Geno bravely fought against Huntington’s Disease (HD) after watching his mother succumb to this debilitating sickness. He carried on even though he feared that he may fall victim to the same illness that consumed his mother only to be dealt a blow that yes, he too, was going to face her genetic mutations and would develop the disease. Geno leaves behind beautiful children and a family that are not ready to live without him and
because of this monster of a disease they have a giant void now where their dad should be.
Even though I feel as if my breath has been stolen from me, I know that this will only further my resolve. It will push me to fight even harder and continue to push ahead with my efforts to raise money through HD walks and for the families that we adopt each year to lessen the burdens around Christmas, which is supposed to be the most magical time of the year. The money raised at HD events like the walk directly impacts families, like mine, that are affected by HD by providing funding for desperately needed research to end this nightmare that we call a reality. We have to end this madness because no one deserves this. Of course, I have not fought alone and I cannot thank everyone enough for all of the support, financial and emotional, over the years. I will never forget what each of the people in my life have done for me and there is absolutely no way that I could ever thank everyone properly for all they have contributed. My hope walk team raised almost $3000 for the event! I’m floating with determination!
Like many living with the unknown, I know what carrying this abstruse burden is like, and how it affects every decision I make. Every decision, whether it be long-term or short-term, they are all affected because they are weighed against the possibility that I may someday develop HD and how it would affect that situation. For most people it
is incomprehensible, but for people like me, it is our daily existence. Simple decisions that are easy to make for most, are gut wrenching and life-altering for us. Should we get married and risk potentially subjecting our partners to a life of managing every single
daily task for us, no matter how small and simple? Feeding us, bathing us, taking care of the house, and the bills. Should we have children and expose them to this type of existence? Would our partner be prepared to take care of the children on their own if it happened? Even worse, would we want to risk passing on the potential to inherit
or develop this disease to our children? Should we go to college knowing the possibility that we may never work in our fields after dedicating so many hours to our studies? Should we buy our dream house since it is very possible that the state can come back and take your assets when you need long term care? Everyone, at some point in their
lives, has wrestled with these questions for some reason, but, as you can see, when HD is involved, these questions and the decisions carry much heavier burdens and consequences.
Even so, when you are faced with mortality in such a vicious way that is Huntington’s Disease even just waking up in the morning is a reason to be grateful. Another day with the chance to truly live is something incredibly precious. When you are a caretaker this is especially true because life is often dangled in front of you in such a cruel way. You
have constant fears of your loved one choking or falling or getting hurt doing something taken for granted by so many. Every meal that is eaten without incident is an achievement. Every trip up or down the stairs, taking shower and getting dressed is a victory because with HD, these mundane tasks suddenly become MAJOR defeats!
Trying to make sense of why these things happen can be a tedious and never ending journey, and heading down this path can take your life into so many different directions. Some of those travels turn out to be dead ends and they leave you in the middle of nowhere wondering how you got there and how the heck you get back. Others lead to adventures you may have never been a part of if you did not try to figure it out. Of course, there are some missteps you will encounter while you are on the ‘wrong’ path that end up as blessings disguised as mistakes, but only if you have the courage to explore them.
People sometimes ask me ‘does it ever become too much?’ I guess if I really wanted to tally up the things I have been up against-yes, it is a pretty damn long list. It has also been an incredibly overwhelming ride, to say the least, and I still struggle every day. However, I prefer to think of myself as a person who has seen much darkness but
who chooses to move past it and use it as an inspiration to never let it ruin me or who I was meant to be with or without HD. When facing the potential to develop any terminal disease, one can easily succumb to the negative that comes with the fear of the unknown, but I feel it is so important to count my blessings every day and call on my experience to drive me to live life to the fullest. As I have been fighting these battles over the years, I have been taking notes and taking in every lesson as it comes my way. I can tell you, at this point, I have one hell of a heavy note pad full of experience to draw upon!
Every tragedy I experience, I try and learn a lesson from it, which seems to be my way of putting my heartache to work for me. One of the greatest tragedies that profoundly shaped me was losing my best friend at such a young age. Losing Geni has been something that has molded me into the person I am today because when I lost her, the reality sunk in that no one is safe from death and unfortunately, we are not allowed any indication of how or when it is going to go down. This realization makes you face life head on and reminds you to enjoy every second of it. No matter how young, how beautiful, how kind, how selfless a person may be they can be taken abruptly and without warning. From the moment you enter the world, the only thing that is
guaranteed is that one day you will die. What you do with your life in between is up to you and ONLY you to make it count!
Understanding mortality creates an urgency to go on the dream trips, take extra time to meet for dinner, talk about your problems and hash them out. Life is so short. I have seen it, lived it, and I cannot stress it enough. You must surround yourself with the people that build you up as well as the things you love to take full advantage of its sweetness. Buy all the shoes, dance on all the tables, and eat all of the cake! Just get out there and make your life count!
I wanted to share a story with you that occurred on Friday, the day you have waited to arrive all week long. I returned to work from my lunch break and found that the internet was down. After polling nearly every person in my office, I discovered that it was only my area that was without the internet service. Of course, this prompted the routine, one I am sure everyone is familiar with, where you check to see if there are any obvious reasons why the internet would not be working.
After closer inspection, I realized my purse had knocked the phone connection from the wall. I went to plug it back in and I accidently knocked the plug inside the wall. Whoopsie daisy!
I tried to pull it back out, but no success. So I got up and asked around to see if anyone had a flat head screw driver that I could use to unscrew the unit and retrieve the plug that was now residing behind the wall. Of course, none of my co-workers packed their flat heads on the way out the door that morning so I had to improvise.
I decided to raid the office supply closet, but all I could come up with was a letter opener, a scraper in the paint supply box, and a knife. So I did what any person in need of a flat head screw driver would do, I grabbed them all and headed back to my desk.
Looking back, all of these seem like pretty darn ridiculous choices for the task at hand, but I had a problem that needed to be fixed so I was going to give them all a try.
As you can imagine, the letter opener was a fail, knife also a fail, and there I was on my last, and seemingly ridiculous, option of the scrapper just trying to get this tiny screw off so I could restore my internet service and get back to work. After what seemed like an eternity, I was able to wedge the tiny angled corner into the teeny screw enough to get it to turn an itsy bitsy bit.
After reinserting it and moving it maybe 10 degrees each time the screw was finally coming out, a bit of a tedious task, but it was working so I kept at it.
The second the screw came out, I was overwhelmed with a feeling of exhilaration and I celebrated my victory with some serious mental congratulations, maybe some out loud congratulations too. Yet, in the middle of my victory celebration, I was hit by a flood of memories that had long been forgotten.
My dad always taught me that although there will be many obstacles in life, sometimes the biggest obstacle of all is that you will not have the right tools to deal with your problem.
Even so, the problem will still need to be handled. Therefore, you have to make do with what you have available and figure it out!
The scraper and its ability to get the screw out of the wall, even though that it is not what it was intended to do, reminded me of how handy my dad was around the house in such a unique way. He could fix anything… until his disease began to set in. The sicker he got, the harder it was for him to fix things and continue being the mister fix it that he had been my entire life. As his disease progressed, he went from fixing anything to basically coining the phrase “Dad likes to fix things with duct tape”.
For me, this change of pace was especially infuriating because as things would break, I could not grasp for the life of me why we could not just take the item somewhere to be fixed or buy a new one. Of course, this was a time in my life in which I had zero understanding of how Huntington’s disease (HD) worked or why these changes were occurring. Now, I can look back now and understand why, but at the time it was impossible.
There are many time in my life when I have these epiphanies as to why things happened a certain way, what lessons I learned, and why the hell it was necessary to go through them at all. Right now is one of those moments.
I realized the significance of why I was given every wrong tool to deal with my problems. My dad was preparing me for the harder days in which I was going to have to improvise and on occasion fail, sometimes multiple times, before each triumph. Whether it be as asinine as using a scraper to unscrew my phone line or as significant as finding purpose in life, all of those things have proven to require more failed attempts and new strategies than I ever expected. I always say HD took over my dad’s brain in way that made expression of words very hard for him, but he taught me through his determination and continued attempts so many lessons like this one. I have been so lucky to have him for so long!
Also side note: In no way do I believe that my internet being down was detrimental in anyway, it is very insignificant in the grand scheme of things. However, it helped me get in touch with this life lesson from my dad. You see, for me, one of the hardest things in my HD journey has been being able to separate the disease that has taken over my dad’s thoughts, actions, and existence from who he was as a person, what he stood for and believed in before the progression of HD, which are polar opposites.
It is very easy to get mixed up and forget that his actions are not his own. I still struggle with this and have to remind myself every single day that this is not “him” this is the disease. Being able to separate those things takes time and energy and it is exhausting, but it helps me stay dedicated and that’s what matters most to me.