My experience as a caregiver for my father with Parkinson’s
Hillary Lake sometimes also known as The Whiskey Sister, is a risk taker, lover of life and people. Her goal in life is to inspire and heal the world one body, mind and spirit at a time living by example, following her passions and sharing through pictures, writing and in person.
Her whiskey journey, began in November 2010 as she was on her way home from her brother's graduation from boot camp in Fort Knox, Kentucky. On a tour at the Jim Beam distillery her love affair with bourbon began. Since then she has procured tasting events and taught whiskey education to various groups, been involved in multiple private barrel picks, blended her own bourbon, was inducted as the first female member of the Bourbon Mafia, was written up as Bourbon Babe of the month and in 2013 opened a neighborhood bar with her husband that was recently named one of the best whiskey bars in Chicago in Forbes magazine.
Hillary is just as passionate about her family as she is about whiskey. She loves being a mother to her two kids and is happily married to her best friend and business partner Bruce. In November 2018, Hillary relocated to the first coast in Jacksonville Beach, Florida and became the full time live in caregiver for her dad with Stage 4 Parkinson’s.
While in Florida, Hillary launched Hillary Lake Event Planning which combines all of her passions into one business. She is offering Kentucky bourbon country retreats, coastal wedding planning and catering.
In her spare time, besides sipping on fine bourbons, Hillary likes taking road trips, sitting on beaches, planning dinner parties and reading recipes.
I have been mulling over what to share and how to share of my journey. What is too much? Am I helping anyone? Do people see me as attention-seeking putting all of this out into the world? Does it even matter what people think or if anyone even reads this blog? I am not sure of any of these answers. And, frankly I am not going to worry about it right now, or ever again. I am not going to worry about what or how I share. This is my experience and my way of processing it. The internet is still a free world so you can read or you can click on something else if you choose. I have realized that I would be doing good for someone. Since joining the Parkinson’s caregiver and elderly parent caregiver support groups on Facebook I have come to see a whole new world that I never knew about. The caregivers are a lot like the patients, invisible in society. They are stuck inside and sometimes even hiding in their homes. A lot of times there is no choice. There is a lack of support and resources for caregiving. I now know this first hand. Sometimes, it’s so lonely and depressing you don’t even want to engage another human being. Sometimes you feel guilty for leaving your loved one confined to their bed. It’s a whole range of complicated human emotions. This whole caregiver thing is SO complicated for modern humans. Back in the day, elders were respected, revered. The prescribed way of living and dying, with family, was clear. Times have changed and everyone values their independence. Forget about family,… “What about MY LIFE?!” I am not going to lie, I felt that. It is so ingrained in our culture in America. Independence. Freedom. It’s not my problem. And here we are. Here I am. I have been reading the book Being Mortal by Atul Gawande and he states, “The amount of freedom you have in your life is not the measure of the worth of your life.” I’m going to leave it there for now.
“Solitary confinement is a form of imprisonment distinguished by living in single cells with little or no meaningful contact to other inmates, strict measures to control contraband, and the use of additional security measures and equipment. ”
I feel like I am in some kind of prison.
Summer is just starting. As a season I, and most people view as a time of vacations, laissez faire plans and freedom. It is a time of the year to relax, travel and take off on the open roads.
And I am stuck. And so are millions of other caregivers.
I am having a very hard time with this concept. I am the girl who constantly ran away from home because I wanted my freedom. This is some kind of karma, isn’t it?
I am driving myself insane with thoughts of how my value of freedom is being compromised, how I can’t just do what I want when I want, and how my future and plans are put on hold.
I’m tired of people saying how I’ll never regret this time with my dad. What if I do end up regretting it? What if I do end up missing out on my life? I was just in the middle of running our bar and building up my retreat business that I had big dreams for.
And not only am I in this prison for my future plans, I put myself in some weird ass current prison state of mind. Being in the house most of the day, I don’t even want to go out and see other people. Sadly, I must admit, I go a couple days without a shower sometimes. What’s the point?
I am sharing this for a couple of reasons, too many caregivers are feeling the same way and the lack of support all the way around is an elder care crisis. I recently joined a couple caregiver groups on Facebook and I was shocked to see how many people are suffering like I am and a lot worse. There are mothers taking care of their mothers and school age children while also trying to hold onto a job. There are elder spouses caring for elder spouses. There are only children living in remote areas without access to resources like big cities. Before this experience, I didn’t know the severity of this aging epidemic.
Some of the most heartbreaking stories are similar to mine. People who have had to work their whole lives, like my dad, are not fully supported by their social security or medicare. We can’t get a paid caregiver to relieve me unless we pay out of pocket or we are dirt poor. I also learned the federal poverty level is $20,780 for a family of 3 and my dad doesn’t qualify. He gets slightly over that, hardly enough to support our household and pay out of pocket for a caregiver at $25-$40 per hour. Although, I’m not sure if I can find a part time job that pays $60 an hour. Oh, maybe I can find a job that would just let me work in 2-3 hour increments. People are forced to spend down their hard earned savings and also sign over their houses for home care or nursing care. And don’t get me started on the shit wages paid to caregivers, most times they don’t even get that $25.
It’s a double edged sword.
It’s a dirty trap.
It’s making me crazy. And this week it had me at my breaking point.
Every care giving piece of advice out there says, “don’t forget self care and to take some time for yourself.” I ask, how are caregivers supposed to do that? There is plenty of advice on that too. We can make a schedule with other family members. We can ask friends and neighbors. We can join support groups. Here is a nice little handout from the Mayo Clinic. All lovely practical advice in a perfect world.
Friends, I didn’t know I would go down this path of caregiver stress and depression. It is a slippery slope. You think you are doing fine juggling all the balls, staying positive and keeping a smile on your face and then boom one day you realize you aren’t yourself. And you are exhausted and at the same time can’t sleep. And you the helper needs some help.
From this latest episode in my care giving journey I learned I need to keep asking for help and be open to receiving it. We aren’t supposed to do this alone. We can’t do this alone. Solitary confinement is no place for anyone.
If you caught my post about feeling lonely…missing my husband is a big part of that, especially as I sit here on the eve of another holiday without him.
My husband and I had been attached at the hip for almost seven years before I moved to take care of my dad. We were both unemployed together, then we opened a bar restaurant together and worked every day together, took our time off together and still actually wanted to be together. Some may call this codependent, but we call it best friends.
This transition hasn’t been easy. It all happened really quickly and we were not really ready for the big changes that would consume us. There are so many facets to this aspect of caregiving. The emotional and psychological stressors coupled with the financial burden have been overwhelming The impact of caregiving and long distance relations on marriage and spouses is great and it deserves attention.
Sometimes, like us, one spouse has to move out of the marital home and sometimes, like us move far away. I am in Florida and my husband is in Chicago. We are still learning how to navigate all the feelings associated with a long distance relationship. Truth be told, I was optimistic in the beginning. Plenty of people survive and even thrive in long distance relationships. I had naive visions of jet setting and meeting up in sexy hotels, hours of long meaningful phone conversations and flirty texts in between. Real life is a little different.
We have been exhausted by the traveling. We do manage to have fun on our visits, but we also always have to mix some business in. If hubby comes to Florida, I am still on shift and when I go to Chicago, he is still in charge of the restaurant. Not to mention when I am away from Florida, I am worried as if I have a baby at home with a sitter. It’s completely unfounded anxiety since I know my brother is a capable caregiver when I’m away. And, if you have your own business, you know it’s the same for hubby when he is away from the restaurant. We get the same amount of half decompression coupled with half anxiety. At this time, there is no 100% relaxation. I am hopeful that we will eventually find some qualified help that we can afford so we can all have a well deserved break. I plan on sleeping for 24 hours in my husband’s arms when that day comes.
Being apart and away from each other weird, negative emotions and feelings develop. There is this uncertainty that creeps in. We have both felt feelings of being unsupported, not important enough, unwanted, untrustworthy and jealous. We are two people that genuinely adore each other. Where the hell is this shit coming from? I am always up for a challenge in the growth department, but wasn’t agreeing to be the caregiver for my dad enough? Now I have to navigate a new trajectory in my marriage too? Awareness is the first step, I guess. And hey now we have some stuff to talk about on those long phone conversations I was dreaming about. I keep the intention of this experience bringing us closer together and also that I am committed to staying married at the forefront of these episodes, even if I act like an asshole sometimes. I am hoping he does too. Our communication styles are different and we process things in a different way. This path is not linear. Thankfully, we still agree on our intended outcome of sitting in rocking chairs together on our porch when we are old and gray. I will never let go of that vision.
The financial burden of attempting to support two households and travel in between them on one income are good fodder for more stress and meltdowns. I tried to get a part time job when I first moved to Florida. I would be a horrible employee. I moved here to take care of my dad, not get a job. The energy that it takes to care for someone all day doesn’t leave you much to go waitress or bartend for 5 or 6 hours at the end of the day. After my training week, I wondered to myself if I was trying to kill myself quickly? I have been on the waitlist for some caregiving assistance with the Elder Care Resource since September when this decision was made. Luckily, my dad has some social security and small savings keeping us afloat while we figure it out and wait. The sad reality is that for a lot of families, they have less than that. Outside resources are difficult to not only navigate but also come by.
On the flip side of this, in Chicago, I was a full time manager at the restaurant and then I was gone. My husband’s business partner and life partner, gone all at once. It has taken it’s toll on him and the business. I’m not able to support him the way he is used to being supported. And he’s not doing things the way I would. Needless to say, some more of that food for thought and if you don’t think about it mindfully it’s a landmine.
I’ll end this post with how I began… missing my husband on another holiday. I moved here at Thanksgiving and Florida Thanksgiving had been part of our tradition for the past few years since my brother lived here. Then came my birthday and Christmas. We put up a tree together in Florida and then I flew to Chicago on Christmas Eve and left on New Year. It was weird, and exhausting. I tried my best to keep some of our old traditions in tact. I made my normal cookies and brought them to Chicago, we visited the families for the holidays and opened the bar on Christmas just like we have for the past 5 years. He surprised me with a visit for Valentine’s Day. And then came our first St. Patrick’s day apart. I was feeling pretty low on St. Patty’s especially remembering all the highs of our St. Patrick’s in Chicago. You may think it’s just one day, no big deal, insignificant in the scheme of things but it’s an indication that things will never be the same again. And, that’s when it hit me again that things have to evolve. We are responsible for creating something new. We need new traditions, and new ways of being together. We have to let the old ways of being fall away.
How fitting that this holiday of Spring renewal is the next holiday we won’t be together in the flesh? We have an opportunity to daydream and vision into reality our renewed adoration for each other. We get to keep on practicing love and forge a new path that leads us to those rocking chairs.
I love and adore you my sweet husband. I look forward to the next time I fall asleep in your arms and wake up next to you.
This won’t be the last post on this topic. My husband and our marriage are a major part of this journey and I think it’s important that other couples know that they aren’t alone in their yucky feelings and that success is possible. I hope my transparency and vulnerability sharing this part of my life, our lives, here can help someone else on this journey while we navigate ours.
This past week my daughter was out of town, my brother, sister in law and other core friend were all on vacation and of course my husband lives in Chicago. It was myself, dad and the dogs. Thank god for the dogs.
I am a person who never feels lonely. I have always been surrounded by people. I have never lived alone. And I always make connections with people so I never feel lonely, even if I am alone. As a matter of fact, I usually crave some alone time since I am always with people. It is usually a luxury to take myself out to lunch and eat by myself. My daughter thinks I am weird. I enjoy it.
About midweek, after the shit storm was over, I was starting to feel a bit bored. Luckily I live in a place where there are lots of options and some really good free options. I opted to check out a place that my brother had previously recommended. I walked myself over to the The Blue Jay Listening Room and discovered a new duo that was definitely enchanting,just as the review said. I embraced my alone-ness that evening and sat at a table rather than at the bar where I might engage with someone. The duo were soulful and heartwarming and just what I needed to raise my vibe that evening. If you ever get a chance to see Tina and Her Pony, treat yourself.
The next evening I took my usual evening bike ride and decided to stop for a drink before going home. I was in a certain mood for a quiet, adult place where I may engage with some other humans. It was a Friday night and there are a lot of young places by the beach so I circled around and almost went home but decided not to be a hermit. I parked my bike and popped into the wine bar. It seemed everyone was coupled up at the bar when I walked in so I checked out my phone. Then my auntie called me, I picked up. I never have time to chat with her when she calls. Honestly, I am hardly ever able to answer when she calls. It was nice to talk to her and catch up. She reminded me I am not alone. I also texted a bit with hubby, but he was busy at work. I was still craving some human connection, starting to feel lonely. This was one of the very few times I have ever felt this way.
My third day alone, I again went on my bike ride and decided to try again for some human interaction at happy hour. I stopped in at the Tides Tiki bar at the Hampton Inn on my way home. I’m a big fan of beach bars and especially hotel beach bars. I have never had a problem striking up a conversation with someone at a hotel bar. I had a couple of cocktails and decided it was probably time to start thinking of going home. Then the bartender bought me a drink. And then the clouds became really dark and it began to pour. That’s when I met my person.
I had been seeking a connection all weekend and God knew this. He planted a gracious, lovely woman right next to me under the tiki roof. It was magic. She is a fairy Godmother. We started chatting and it turned out she is the President of the Women’s Food Alliance here in Jacksonville. Right there in an instant, I met not only someone to chat with for the moment, but someone who connects me to new friends and colleagues.
Monday everyone returned home and everything was back to normal.
I am grateful for the newfound insight about lonely feelings and bored feelings. I know there are a lot of people, especially caregivers that deal with these feelings on the regular. I am fortunate to have family, that I like nearby, regular visitors and that I’m an outgoing person willing to make new friends. If anyone reading is in this position, I urge you to step outside your comfort zone and your care giving role once in awhile and see what magic the world has waiting for you.
As a caregiver, I get a tiny pin head of a glimpse of how it feels to not be able to do what I want when I want.
I anticipated the shitshow. I knew that one day it would eventually be. I was so afraid of it, my brothers were too. Dad is still afraid of it.
I remember back in the beginning, we used to all sing the Parkinson’s shuffle and dance around together. Music always seems to help. He and his sweet wife would play music, sing and dance together. The most joyful moments for me and I am sure for them too. On occasion, in the mornings he will bust out in a melody and some lyrics out of nowhere. Most trips to the bathroom, I start humming melodies to get his feet to move.
The violent episodes of dyskinesia have mostly subsided except for an occasional episode of his hands shaking. He used to be like a ping pong ball, especially when excited or stressed. I was always impressed that he would and could ride his bike, a normal, two wheel bike. Even though once he parked or crashed into the bushes at his destination, he couldn’t stand or sit still. Some would probably define that as a shitshow.
Either way, dad has not been in total control of his body for about twenty years now. And it just keeps getting worse.
What kind of hell is it when your mind is still functioning and you can’t will your body to get up and get out of bed to make it to the bathroom? What kind of hell is it that you want to get up and do something, anything… and you can’t. You can’t even reach for the pill that may give you some relief. And your brain is still working. Solitary confinement of the body. Pure hell.
I know he restricts his liquids because then he will have to pee, he told me. Another challenge…for both patient and caregiver. “Dad, I am here to help you.” “I don’t want to have an accident or be a bother.” “Dad, this is why I live here with you.” He gets dehydrated and more dizzy. It contributes to lack of consistent bowel movements. I have no clue how it’s affecting his meds, but I suspect it is. And, it’s his body that I am not inside of so I don’t know. What right do I have to tell him to do anything at this point? I make things available. I make suggestions and offer common knowledge. “Dad, you know you should drink some more water, it helps you poop.”
I know a lot of us take our bodies for granted. We overeat, drink too much, don’t get enough exercise or fresh air. Without disease, we take for granted how perfectly they function. We take for granted getting up to make it to the bathroom on time.
As a caregiver, I get a tiny pin head of a glimpse of how it feels to not be able to do what I want when I want. After all of the awesome food that I cook for dad cycles through, I wait. I know most of the time he is waiting and he is always concerned with his bodily functions. He can’t move. He can’t eliminate. He can’t sit up. He can’t swallow. I hate seeing my dad reduced to the elementary functions of bodily processes. Truly a shitshow of sorts.
We get about twenty to thirty minutes a day of humor and current events, on a good day. In the morning, we have fun talking about the news lady’s crazy eyebrows. The other day we got to talk about how funny it is that he gets to see me parent my daughter at about the same age I flew the coop. “Everything comes full circle,” I said. He said, “Hmm.”
I’ve been in a sort of a germinating phase over the past month or so. I have stopped beating myself up about not being productive and have accepted this past couple of months as a sabbatical.
The weather has been rainy and grey for most of February and that is the best kind of weather for going within. And for reading. And for rest. And reflection. And for mourning.
I came to the realization, and this is so important for caregivers to get, that I was in a mourning phase. That I need to acknowledge my grief. My life, as I knew it, died the day I moved to Florida to take care of my dad. And this is not something to take lightly.
At first you are overwhelmed with the action items and that propels you forward. Then you are excited and hopeful about the care and better life you can give your loved one and that sustains you for a period and then you come to the realization that this is your new life. You left your career, your home, and possibly your spouse or significant other. And you don’t know how long this will last, 1 year? 20 years? If you don’t encounter some disorientation and grief, I think you are lying to yourself. It’s important to be aware of the process so you can transform that grief, have your funeral for your former self and move on. It’s easy to get caught up in the cycle of exhaustion, cooking and cleaning all day and then settling in with that bottle of wine to reward yourself. Before you know it a month has gone by. Before you know it, your dreams and your life has taken a back seat.
Good thing life is like the ocean with its ebbs and flows.
Good thing nothing lasts forever.
I appreciate the way life moves us forward with challenges. They always say nothing worth having is ever easy. If you accept the challenge, as a caregiver and caregiver support, then it’s your responsibility to move through your shit. You have to approach your new life with open eyes, mind and heart. Take your time to grieve, to mourn, to feel the sadness of letting go. I’m guessing it’s good practice for when your loved one leaves this earth plane. Again, it’s a process. But don’t you stay stuck in the shit. Don’t have a pity party. Don’t be a martyr. Use your shit as fertilizer, remember I said I was in a germination phase.
My husband came to visit for Valentine’s and built me this beautiful raised garden. I’m looking forward to making dad some delicious tomato sauce and stuffed peppers when we get to harvest the fruits. For now, we tend the garden sustaining life which in turn will sustain our lives. Such a lovely metaphor for caregiving. Until next time lovelies. Now go seize the day!
Yes, this is becoming a problem. It’s already January 21, 2019.
Where do the days go? What am I doing? How am I doing?
When I made the decision to be my dad’s full time caregiver I was so confident that I could do this and do it well.
I have all the tools. I went through 2 yoga trainings a 6 month Thai massage course, a reiki course and I taught yoga for over 6 years. I know bodies. I know energy. I am spiritually grounded. I know how to ground myself and raise my vibrations. I am physically strong. I know how to use my body to lift someone else’s body. I understand the importance of self-care.
I have life experiences. I was married for almost twenty years. I went through a long and shitty divorce. I have two kids, ages 25 and 17. I have been through my own abuse, addiction, therapy and recovery. I am mentally strong. I have found love again and remarried in my forties. We opened a bar/restaurant together and if you know anything about running a bar/restaurant, you know how that counts for a lifetime of experience. Again, I know the importance of self-care.
I have the wisdom. I have always been a person who is curious about the world and my place in it. I read, reflect, feel and integrate my experiences. I am grateful for everything this universe throws at me. I try to learn from my mistakes and when I don’t I usually recognize when I am repeating them and I ask questions and seek understanding and evolution. Self-care has been one of those recurring lessons.
I really can’t believe that January 2019 is almost over. I am grateful that I finally woke up!
The past few weeks have been foggy. I returned home to dad after the holidays in Chicago on the 2nd, ready to take it all on. And then I don’t even know what happened or how almost 3 weeks have passed.
My daily routine consists of waking up early to give dad his meds, take him to the bathroom and make him microwave pancakes, he is looking to get into the Guiness Book of Records for most microwave pancakes eaten consecutively. Then he does the pancake pass out and I wait. He comes back alive usually between 8-10am. Today it is 10:30 and he is still sleeping. Then there is usually some type of snack in the form of ice cream, brownies or cookies. After snack time I work on figuring out some real food that he can eat. Proteins are tricky and at this stage his swallowing can be a challenge and also he isn’t wearing his teeth… sooo plant based, soft foods are where I have been focusing. He probably shouldn’t be eating all that ice cream according to the protein article but I am not going to argue with a 100lb dying man when that is half of his diet. Anyways, I like the challenge of finding new recipes and cooking old favorites like the spinach stuffed shells like mom used to make. His eyes lit up when I said I was making those for dinner one day. And some days, I have no clue what to cook and he has no ideas and I am tired of cooking and eating and for those days there is a box of pasta roni and wine and cheese down the street for me. Those days are pretty infrequent since reading menus, recipes and cooking are my favorite things to do. The days of caregiving are long. I am on about 12-14 hours a day before he takes his last dose and I retreat.
Now that I am aware that 3 weeks have gone by and I haven’t been using my tools and I discovered myself in a funk the other day. I am ready to take this one day at a time, mindfully. Yesterday and today I practiced my yoga and I want to try and do that every day. Today I am writing and I intend to keep up with these updates at least once, maybe 2x a week. I’m working on taking my passions of event planning and cooking and creating some new business here so I can still be plugged in to the outside world I love and make some money.
I am heeding the message that I have been given throughout all of my years that I need to take care of myself. I am pretty sure this is the biggest lesson I am supposed to learn in this chapter. Reading through caregiver blogs, attending the caregiver summit and talking to people who have been in my place, self-care is the loudest piece of advice I hear.
So, I’m signing off to take a walk in the sunshine. Take good care of you. Ciao for now!