Author: daniellediblasi

November is National Caregiver Awareness Month

Posted on by daniellediblasi

I woke up this morning to a couple of realizations. Primarily – it’s November. Whoa. How did that happen!?!? Does this mean it’s time to pack up my bathing suits and tank tops? (NEVER!) As it turns out, November happens to be National Caregiver’s Awareness Month, which brings me to my second realization – I have not shared a blog post in two years. What better time to bring these updates on Dad and what it’s like to be a full time caregiver back to life? So here we go.

What’s new?

Typically, when you run into a friend and ask, ‘what’s new,’ the expected response is, ‘not much.’ Have you ever received a genuine response to that question? In this case, it’s been a couple years since I posted an update, so there are actually some ‘new’ things in our lives. The biggest of all, is that in February 2020, we moved to a new house (right across the street from the house my dad and I moved into in 2018) and my husband, Randy, moved in with us. Why move to a house directly across the street from where you currently live, you ask?

Prepping for Trick or Treaters

Couple reasons. The new house is directly on the water and is more spacious. After spending three years living apart from Randy, it became evident that caring for my dad was going to be a long term situation. When I first moved out, I told Randy that I’d never ask him to sacrifice his lifestyle or make any changes to accommodate our situation. That meant that while I was living with my dad, Randy stayed in our house in the city, near all of our friends. This maintained to be true but we ended up coming to the joint conclusion that things are better when we’re together. The new house is perfect for us because it allows more space for us and while Randy had to sacrifice his bachelor-like city living lifestyle, he now has the benefit of life on the water. Bonus perk: Dad LOVES waking up every day, looking at the water and counting the ducks. Every day now begins with an update on how many ducks are or aren’t floating around our pier.

A House and a New Job Too?

In late 2019 after being laid off from my job at 2U, I made the decision, with the support of my brother, to not look for another job and to focus solely on what was already a full time position – caring for our dad. It’s important I mention that my brother not only supported this idea but also encouraged it because giving up a salary meant that I’d become financially reliant on my dad. My brother saw how managing my dad’s care and trying to function in a professional role at work that was demanding and time consuming, was tearing me apart, I’ll be forever thankful to him for encouraging me leave my professional life behind and embrace life as a Stay at Home Daughter.

OK….. so, why did you get a new job? Oh well, turns out that life is infinitely easier without having a stressful 60 hour work week plus caring for Dad but guess what? It’s also lonely. It was the loneliest time of my life. I was living in a neighborhood where I didn’t know many people, all of my friends were still in my old neighborhood in the city, along with my husband, and I really missed the interactions with my colleagues – many of them were much more to me than just coworkers. So, I decided to solve this problem by revisiting something I know how to do well and love – bartending. As luck had it, there was a cute local dive bar, only blocks from our house. I could pick up a couple shifts a week, make new friends, and only be a minute walk from my dad at any time if there were to be an emergency at home. This was great for a couple of months until March of 2020 when Covid hit.

The Pier at the New House

So…. what’s the new job? Well, it’s not bartending. That was great but once the bar reopened after lockdown ended, it unfortunately burned down. So at this point, I’d been laid off and then my new place of employment had burned down. Thank you Universe. I get your point, but I still can’t fully wrap my mind around not having some sort of job. During all of that time, I had began making candles as a creative and therapeutic outlet. In November 2020, I decided to turn my candle business into an official caregiver side hustle and launched, Casa Figlia. I’ll discuss caregiver side hustles more in a a future post but will share with you now that after a year of launching my new business, I have sold over 1,000 candles!

How’s Dad?

Short answer – he’s great! He’s lost a lot of the weight (over 40 lbs!) that he’d gained while recovering from cancer, he’s making great cognitive improvements, he is involved in multiple studies at Hopkins and most importantly, he’s happy. He’s taken a couple trips up to Long Island to visit his brothers, nieces and nephew, he had a wonderful week at the beach this summer, he spends time with his grandsons as often as he can and he goes to the gym multiple times a week. He is also well enough to stay home alone for short periods of time without me worrying he’ll try again to hitch hike back to NY. Expect a more detailed post on his updates, how he’s overcome obstacles and what his day to day looks like coming soon!

Long Island Vacation

How Are You Going to Observe Caregiver Awareness Month?

During the month of November, National Caregiver Awareness Month, I plan on bringing my blog back to life with more updates, tales of caregiving and quick, healthy recipe ideas. I’ll also be posting daily caregiver facts, anecdotes, funny dad sayings, annoying dad sayings, vents, rants. etc…. on Instagram My hope in sharing these posts is two-pronged – to keep those who know and love us in the know about my dad’s progress and to hopefully reach, encourage and connect with other caregivers. Thanks for following our journey.

O Christmas Tree, O Christmas Tree

Posted on by daniellediblasi

Last December, while driving on 695 just before exit 42, my father and I noticed a pine tree in the median that appeared to be decorated with Christmas ornaments.

We passed it rather quickly and so we thought, we couldn’t be sure – maybe there was an old balloon or other shiny piece of debris on it, giving off the appearance of a glimmer. The next time we drove by, it was with anticipation, looking out for it and driving slower so that we could be sure to get a good enough look. To our delight, it was just as we thought! The tree was decorated with gold, red and silver ornaments and it was beautiful!

From that day on, looking for the tree as we drove that leg on 695 became a ritual. Luckily for us, we live right off of exit 42, so this is a road frequently traveled. I’ve mentioned before that we spend a lot of time in the car together as we go to multiple doctor/therapy sessions a week. Looking for the tree has provided a fun and uplifting distraction for us as we’re on our way to some scary and potentially life-altering appointments (MRI results) as well as the more mundane but certainly not fun ones (think podiatrist…) January, February, March, etc… all passed and the tree was still decorated. At some point, we stopped wondering when the decorations would come down and just became so amazed that they were still up – withstanding all kinds of weather. Tree sightings have gotten us through countless emotionally arduous trips to appointments for a full year now.

I wish I knew who had the idea and took the time to decorate that little tree on 695 so I could thank them and let them know how much joy it has brought into our lives. How it’s made challenging times lighter and brighter for us and hopefully others too. I’ll probably never know, but what I can do is to continue the tradition.

Yesterday, on our way to an appointment at Hopkins, we pulled the car over and added some more holiday flair to our friend the tree. Some of the older ornaments had in fact blown off and we wanted to make sure the tree was still festive and bright so that other passerby could find the beauty in it, as we have. I watched as my father happily hung the ornaments, all the while, singing Paul McCartney’s, ‘Simply Having, A Wonderful Christmas Time.’ When finished, we drove off, headed to Hopkins with full hearts and a shared Christmas wish, that our contributions to this special little tree will bring as much joy to others as it has to us.

Happy holidays to you all and warm wishes for the new year!

Caregiving with Hygge

Posted on by daniellediblasi

Years ago, when I first learned about the Scandinavian concept of hygge (pronounced ho͝oɡə), it immediately resonated with me. If asked to explain hygge in one word, I’d simply equate it to coziness. It’s about creating a homey environment that evokes feelings of warmth, contentment, and overall well being. Personally, I believe Hygge is about turning your home into an expression of who you yourself are, so that you’re living in a home where you’re inspired to be your very best self.

Why is this important for caregivers? In my attempt to provide holistic care for my father, this is one of the ways I aim to feed his soul – by ensuring he’s surrounded by a beautiful comfy setting full of things he loves. Unless I take him out, he’s pretty much housebound. His driver’s license was revoked because of the damage to his brain left behind by the tumor and I know this is for him, THE thing he struggles with most. Being that he’s at home most of the time, he should feel happy, cozy and that he’s still living a good life. In this way, I’m using hygge in our home as a way to nurture him and myself too, to be honest.

Below are images of my most recent project. I chose to extend our hygge lifestyle to the outdoors as well and transformed our concrete block patio into a charming area to gather outside by the fire pit.

I’ll leave you today with a bit of caregiving advice and this applies to you, whether you’re caring for a parent, child, friend, neighbor, or even ‘just’ yourself, and don’t let yourself believe that that is not important – take some time to hygge. I guarantee you’ll feel better.

Unity in Community

Posted on by daniellediblasi

Living with my dad and taking care of him has been such a joy, even though it does come with some challenges. Something I didn’t see coming, was the loneliness.

Missing the daily interaction with my friends and coworkers was at first overshadowed by the fact that I am actually, never alone. Every day is spent with my father, answering his questions, taking him to appointments, coaching him to continue pushing himself, giving him his medications, cooking for him and basically, attending to his every need.

It’s a weird contradiction of feelings to just want time to yourself, yet also feeling alone at the same time. It took me some time to acknowledge and understand this bizarre new reality.

Before moving in with my father, I was living with my husband in a neighborhood that became the destination for many of my closest college friends.

I was commuting to the office daily, surrounded by amazing colleagues and coming home every night to spend time with my husband and neighbors that had been friends of mine for the majority of my life. I kept my social calendar full and was having a blast.

Things are different now – I have been living separately from my husband for almost two years in a lovely, yet remote area and I’m no longer working, I miss the day to day of what seemed so normal and hum drum then – collaborating with colleagues, living in a neighborhood of lifelong friends and seeing my husband daily too of course, but let’s not tell him that. ; )

All that aside, I am so incredibly thankful for the support I have been receiving. The community rallying around me gives this ‘we’ve got you back’ type of feeling. Whether it’s virtual, coming through as messages on social networks or the blog, texts/calls, visits to our house, or time spent out and about together, it’s all been so immensely uplifting.

All of it has been such an incredible source of support that has me feeling a sort of strength in numbers type of comfort. I feel a true unity in this community and it’s helping me help him. Thank you!

We can’t underestimate the power of community and the feeling of togetherness and strength that comes from it.

If you’re a caregiver, don’t isolate yourself from your support system. It can be easy to have tunnel-vision, only focusing on managing the day to day of the person you’re caring for, and forget about the outside world that includes those who care about you.

Reach out to others when you need a friend and when they reach out to you, do not forget to respond. For those of you that have friends or family that are caregivers, please know that every interaction or word of encouragement you share with them is giving them the energy to carry on. There truly is unity in our community. We’re doing this together and I couldn’t be more thankful.

Stay at Home Daughtering

Posted on by daniellediblasi

Life happens. Isn’t it funny how people use that phrase when something disappointing or bad happens?

Four months after returning from the leave I took from work to care for my father, and shortly after my 10 year work anniversary, I received the sad news that due to a company reorg, my position was being eliminated. 

While finding out I was losing my job was shocking and difficult to hear, I walk away with gratitude for my time there and the flexibility the company provided me to care for my father.

In the 10 years I spent there, I learned a ton, both professionally and personally, and developed life long friendships that I will forever treasure.

I’ll always value the professional relationships and connections I made there as well, but while relationships do matter, unfortunately when it comes to running a business, they are not unconditional, which brings me to my decision for my next chapter.

Not pictured is my father, who was in the hospital at the time.

In most cases, for those of us fortunate enough, the one unconditional thing we can rely on, is love and support from our family. They are there for us to share in our successes and lift us up when we struggle. We, in turn, are there for them.

In that vein, I’ve decided to embrace this opportunity as a chance to be there on a full time basis for my father, who still needs a lot of support as he continues to make head way in his recovery from brain cancer and all of the ailments that came along with it.

I’m officially now a stay at home daughter, which I believe is as important a role as a stay at home parent. I have the chance to make the latter years of my father’s life full of joy and laughter and potentially even lengthen those years, while providing relief to the rest of our family members who can rest easy knowing he’s in good hands.

So, with this change, I’m picking up my old blogging gig again. I’ll be continuing to share the adventures of this father/daughter duo, focusing on living every day to the max, appreciating the beauty in life and ensuring wellness of the mind body and soul is our number one priority. Thanks for being a part of our journey.

Week 5

Posted on by daniellediblasi
How many birds’ lives have been saved by these brush strokes? We may never know, but we’ll still ponder it every time we walk this hallway…..

A HEALING ENVIRONMENT

A mural in one of the many long hallways of Hopkins that helps turn what could be a sterile, tense environment into a soothing and healing experience

We consider ourselves incredibly fortunate to live so close to one of the greatest hospitals and medical institutions in the world.  People travel from all over the globe to Johns Hopkins Hospital to receive treatment from physicians that are the best in their fields.  We’re there often enough that we’ve seen a lot of people from different countries and cultures, many with translators in tow, and this always reminds us how lucky we are to live only 20 minutes away.  Hopkins’ reputation is renowned enough that I don’t need to spend time rattling off its impressive stats. Everyone knows it’s one of the best medical institutions with cutting edge medicine and world class doctors.  That being said I’d be remiss though if I didn’t take a moment to express how absolutely amazing my father’s doctors and therapists have all been.  The care he has received from them has gone way above and beyond every expectation.  Their treatment plans are thoughtful and they approach his care from a perspective of his overall well-being. They truly care and are invested in his recovery to the point that they make themselves available to me for questions or advice when needed.  They are kind, approachable, and personable. We simply love them.

Laughter is medicine. Thank you to the staff of the outpatient rehab center for not forgetting that.

We’re at Hopkins a lot – multiple times a week for speech, PT and OT, monthly at the Bayview campus for psych, social work and spinal specialists and several times a year to check in with his oncologist.  We’ve become so comfortable and familiar with Hopkins that getting there and navigating the campus are no longer big deals at all.  What used to seem like a mammoth maze-like institution, now feels as familiar as your local grocery store and just like the cashiers or the person behind the deli counter may know you, the staff there recognizes us.   This is probably because my dad and I tend to walk around with a big grins greeting everyone. Hopkins becoming a mainstay in our lives means it’s something my father talks about and thinks about a lot.  Daily, he shares interesting musings, ideas, thoughts or ponderings that have gone through his head. Eventually I will create a page on the blog dedicated to these, but for now, here are a few that center around Hopkins:

  • I’d like to write a book about Johns Hopkins himself, traveling through time to visit his hospital as it exists now. Can you imagine his reaction?
  • What do you think Baltimore would be like if there was no Johns Hopkins Hospital?
  • I have an idea for a murder mystery.  Patients at Hopkins are being admitted but they are never checking out – they are being murdered by one of their own doctors.  (sidenote – this idea came to him after a visit with the only one of his doctors that he is not particularly fond of and I’m pretty sure he was the villain my father imagined in his story)
  • Don’t you think they should put up some more pictures of Johns Hopkins where he doesn’t look like such a stick in the mud?
Taking in all the facts

One of the things though, that we find so special about the hospital has nothing at all to do with its reputation, it isn’t listed among the reasons Hopkins is so highly rated and it’s not the reason people come from far off lands to be treated. It’s the thoughtful approach that was taken in designing the building, the art on the walls, the gardens and all of the other beautiful details that were designed for the benefit of the patients and staff.  I believe I may have mentioned in another entry that my father is a lover of arts and culture.  I also know I mentioned that he has a slight loss in his visual field that will cause him to sometimes overlook things right in front of him. What he never misses though (yes, in addition to food) is the opportunity to stop and admire art of any form and art can be loosely interpreted. By his definition, it’s everywhere. He not only notices it, but stops to take it in, nothing is taken for granted or passed over without him stopping to admire it, and share some thoughts.  Even when I’d find this to be a source of frustration as I was trying to hustle him in and out of the building so I could get back to work as quickly as possible, it was always endearing.  I love this about him. It’s almost childlike and I would say it is except for the insights he has on what he’s looking at are always so profound. 

His absolute favorite is a compilation of 26 Monet-inspired photos of the bridge in Giverny and its surrounding garden.  The artist, Spencer Finch, is responsible for the design of many features of the hospital, including the colorful exterior and the bird-friendly brush-stroked glass that serve a dual purpose – to prevent birds from crashing into the glass and to create a ripple like effect as the sunlight filters through inside.  All of these features contribute to what truly is a healing environment which doesn’t go by without notice or appreciation by us.