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.