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!
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.
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.
Life happens. Isn’t it funny how people use that phrase when something disappointing or bad happens? I never hear it said when someone gets a promotion or finds 20 bucks in an old coat pocket. I recently found myself in a situation where I heard myself saying life happens but I’m making the conscious decision to turn it around and rebrand that phrase into a positive. Life happens, and it can be wonderful.
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.
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.
Week 4 brought with it the usual host of doctor and therapy appointments but also one of the most exciting things to have happened yet! One of my father’s amazing doctors at Hopkins referred us to the acac’s Physician Referred Exercise Program, p.r.e.p., which turns out, is exactly what we needed. The p.r.e.p. program is a part of acac Fitness Club where people referred by their doctors follow customized fitness routines based on their health goals. It’s essentially a prescription for exercise, where in this case, exercise is considered to be the medicine. My father’s doctor enthusiastically provided our referral because she values the importance of exercise as it relates to overall wellness: physical, emotional and mental. This is especially important in my father’s case where our main focus is on improving his brain health and memory. She actually suggested this because she understands the link between physical activity and the release of a protein that can have regenerative effects on the brain.
During our first visit, my father had an evaluation with one of the nurses, who took a thorough medical history to get a good idea of his current health needs. He took time to get to know him and asked questions to gain an understanding of his past experience with exercise as well as his current challenges and goals. Quickly, he realized my father is a former athlete with experience in competitive weightlifting and developed a routine for him that would challenge him at his current state, yet not bore him. I loved how perceptive he was and the measures he took to personalize my father’s routine.
Crushing it
The medical fitness professionals at p.r.e.p. are always there to provide support and motivation for my father as he moves along his routine from machine to machine. Since I’ll be there with him several times a week, I figured I’d join as well. My doctor signed and returned the referral form to them very quickly, which confirmed my faith in him as my health advocate. I can’t speak highly enough of this program and would encourage it for anyone who needs the kind of support they offer. More and more fitness clubs are moving in this direction and offering similar types of programs, so it’s worth checking to see if there is anything like this in your area if you are caring for, or know someone that could benefit from something like this.
SELF-CARE
When I first started blogging about my time on FMLA, I shared that one of my goals was to ensure I was getting the self-care needed to have the strength needed to support my father. I haven’t shared much about this and now many of you are asking what I’m doing to take care of myself. Well, actually, no one is really asking but I thought this sounded like something bloggers say : ) OK, so you asked (or not) and the answer is- several things, although nothing wildly exciting, as of yet…..
The first thing I implemented was a routine similar to the one my father has. As incredible as this sounds, I found early on that when you have a larger perceived amount of time at your disposal, it can be harder to get things done than when you have only a small window. I came to this realization when after the first week I hadn’t done anything constructive yet for myself. All of my commitments to my dad were of course taken care of, but when it was time to go for a run or do something else on my self- improvement list (it’s a really long list and if you’re my friend or husband and have any items you’d like me to add to it you can leave them in the suggestion box and I’ll see what I can do), I’d put it off thinking, well, I can just do that later – I’ve got a ton of time. Later came and went and until I developed a regular routine, these things remained on the ‘will do later list’
WHAT’S THE BEST THAT COULD HAPPEN???
Once I started following the routine, the first general rule that I adapted was to push myself outside my comfort zone. Regularly and often. I worried that with time away from the challenges of work, I could grow into a place of laziness or complacency and so I made a personal commitment to use this time for personal growth. Since I needed to be strong enough for the two of us, I had to commit to getting stronger, in many areas. Forcing myself into areas of discomfort seemed like the best way to get started. My first foray into this area has been the blog. Sharing such a deeply personal experience left me feeling exposed and vulnerable. Putting my feelings into print for others to read was and still is really scary. The moment I clicked ‘share’ I immediately wanted to take it back. All kinds of frightening what-ifs continued to go through my head, but instead of focusing on the worst that could happen, I decided to instead, to ask myself what’s the best that could happen.
Starting the blog has been one of the most rewarding things I could have done. It’s been therapeutic, challenging, fun and has helped me make better use of my time, as this keeps me accountable to deadlines (self-imposed, yet deadlines nonetheless). I feel more confident, productive and focused. The best benefit by far though is the outpouring of love, support and what feels like a full on warm embrace. The words of encouragement I’ve received from you all have added fuel to my fire and have helped me persevere through the tough times that I don’t blog about. The feeling of having a community of support is priceless and I look forward each time I post to all of your comments. Thank you. It’s been so rewarding in fact that I’ve decided to keep this going after I return to work, and I’m telling you now I’m going to continue to need the support even more when I return to juggling everything. Patricia will be back before I start working, so that will make things somewhat easier. I won’t have to clean the house anymore, she’ll take care of that. Well, to be honest, that part has been kind of hard to manage with everything we have going on, so I went ahead and hired a cleaning service for the time she’s been away. I suppose I can chalk that up in the ‘self-care’ category too. It’s one less thing I have to worry about.
Now that I’m going to be continuing on with this beyond the 42 days of FMLA, I am going to have to retitle this blog – any ideas? All suggestions are welcome.
TOP FIVE SELF-CARE HABITS NOT MENTIONED ABOVE
Lot’s of time spent with the dogs
LOT’S OF DOG TIME
2. Taking in every sunset
3. Exercise. Sometimes with the help of the dogs.
EXERCISE. SOMETIMES WITH THE HELP OF THE DOGS
4. Creating healthy concoctions for Dad
CREATING HEALTHY CONCOCTIONS FOR DAD
5. Collecting sticks from the beach. Not sure why this is a self-care thing or what I’m going to do with them, but it makes me happy.
With the help of my father’s speech therapist, we developed a daily schedule for him to follow. Consciously or not, I believe we all crave the structure and sense of order schedules provide. It’s human nature to need daily routines that give us a sense of certainty. A goal of the schedule is to keep my dad accountable for the household tasks he is now responsible for – laundry, taking in the newspaper, bringing in the trash and recycling cans, etc… These are all things our aid would do for him when she was here and so while he’s completely capable of doing these tasks he’s just not used to it. Sure, I could do them for him but my goal is for him to be more engaged in managing his own life. This same sentiment also goes for other aspects of his life, including how he approaches his doctor appointments. Urging him to check himself in at an appointment last week resulted in him responding to the receptionist’s question of, “How can I help you?” with, “I’ll take s scotch and soda, please,” but I still think it was a useful exercise. After all, he achieved his desired outcome, which was a laugh from the staff. As small as these tasks are, I believe they are beneficial for his self-esteem, as when he completes them he feels even the smallest amount of accomplishment.
We need to get to a place where he is independently reviewing his schedule and staying on task so that I am not constantly hovering, reminding him of what he needs to do and in his words, driving him absolutely crazy. Finding the balance of supporting and encouraging versus pushing and nagging is difficult but I’m hopeful it will get easier. Telling him that this is all for his own good doesn’t work, which I should have known because it didn’t work when he used to take that approach with me. It just makes him agitated, which I suppose is natural. After all, he’s living with a person constantly challenging and pushing him, bussing him around from appointment to appointment and practically force-feeding him vegetables. Maybe some meatballs would cheer him up. Think he’ll notice if they’re vegan?
Birdman
Good friends, Laura and Dave, recommended grocery shopping at Sprouts in Towson, so upon their recommendation we decided to check it out after a visit that had taken us to that part of town. They were right, the place is amazing, but that’s not what made this trip so memorable. Our dog, Cecil came along with us to the grocery store and having him riding in our cart encouraged others to approach and strike up conversation. Through Cecil, we met ‘Birdman’ who introduced himself as such based on his absolutely amazing ability to reproduce the whistle of any bird. He performed a few different calls for us and then shared how he does this for all of the children in his neighborhood. The kids get so happy and excited to see him, which in Birdman’s opinion, is what life is all about – bringing joy to others. He says spreading happiness, love and joy is what he lives for and isn’t he right? What could be more important? We were so happy to have met him and it was obvious to me he and my father were kindred spirits, who under the right circumstances would have been fast friends. Oh, and we found some cheap avocados too!
Weekend Update
The weekend brought with it visitors and a trip to Ft. Howard Park. Friends of mine from work stopped by Friday night and later in the weekend three of my father’s former students paid us a visit. Having company is fun for the both of us and especially good for my father. I can see a visible difference in him when people are visiting – he’s putting on his best self, actively trying to be sharper, to play host and to be engaging. Not that he has to try very hard to be charming, that always has come naturally to him. The visit from his former students was really very special. The ladies shared so many wonderful memories that brought him back to a time he holds very dear. Although my father was a very successful medical sales rep for most of his career, it’s the time he spent teaching that is most meaningful to him. Knowing he made a difference in the lives of these students and that they not only still remember him, but care for him means the world. And, they brought cake!
If you live in the Baltimore area, I’d highly recommend you check out Fort Howard Park if you haven’t yet. It’s about 25 minutes outside of the city, free to enter and has gorgeous views. We meandered around for a bit, taking it all in before finding the little garden in the picture above. Check out the inscription on the plaque. ‘Make it a great day or not. The choice is yours!’ My dad read it and exclaimed how much he liked it. If you’ve been keeping up with the blog, you’ve seen the quote about choosing joy, which makes it such a coincidence, or perhaps actually no coincidence at all, that we stumbled across this same sentiment here.
I’ll leave you today with the lyrics from last Friday’s song of the day, the Allman Brothers’ song, ‘Revival’, What’s a song of the day? You know when you bite into that perfect piece of pizza, cake, or whatever you’re craving at that very moment and it just hits the spot? The song of the day is the musical equivalent of that. It’s when you hear a tune that vibes with your current mood, speaks to you and makes you feel something inside. It hits the spot just like your fave food might, but for your soul instead.
People can you feel it? Love is everywhere People can you hear it? The song is in the air We’re in a revolution Don’t you know we’re right Everyone is singing, yeah There’ll be no one to fight People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere Love is everywhere Love is everywhere Love is everywhere Love is everywhere Love is everywhere Love is everywhere Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere People can you feel it? Love is everywhere
Intently watching the Hofstra game while the grandchildren display a rare moment of affection
Week 2 brought with it another slew of doctor appointments. Most aren’t even directly related to my father’s cancer or brain damage recovery, but just the typical types of doctor appointments any 71 year old man may need. I fear I could focus so much on his cancer recovery that he ends up with something I didn’t see coming, like prostate cancer, kidney stones, glaucoma or tooth decay. So, we found ourselves at the urologist, optometrist, and dentist, while also managing to get in our bi-weekly Speech Therapy and an overnight sleep study.
Sleep Study at Hopkins
Sleep apnea is a potentially dangerous condition that brings with it a potential for many adverse effects on the well-being of the entire system, including increasing the risk for conditions like high blood pressure and heart disease, type 2 diabetes, and liver disease, among others. The lack of a consistent flow of oxygen to the brain during sleep can lead to cognitive difficulties, sluggishness and chronic fatigue. All of the above, combined with his current challenges could pose nothing but more difficulty for my father, so for the second time in a year, we spent the night in the Johns Hopkins Sleep lab.
The results of the sleep study we did last summer indicated that he has severe sleep apnea so he was provided a CPAP machine, only for insurance to reclaim it after a few months. The CPAP must be used for a certain threshold of hours in order for it to be paid for by insurance, and since he was unknowingly taking it off at some point each night, we fell short of the requirement. I heard though, that going through the study another time not only qualifies you for another machine, but that the insurance companies are less strict with the requirement the second go-around.
While we were in the waiting room, my dad struck up a conversation, as he typically does wherever we go, with another patient. She was also going to be spending the night for a sleep study but rather than sleep apnea, she was being tested for narcolepsy. My father and I both immediately jumped to our preconceived notion of what we believed narcolepsy to be and asked her how she could have driven the long trip up to Hopkins alone without worrying she may fall asleep behind the wheel. She explained to us that narcolepsy doesn’t actually work that way. Instead, at least in her case, she never achieves the REM stage of sleep and therefore is exhausted all of the time. If she could, she’d stay in bed 24 hours a day, in hopes of finally being able to get quality rest. We were both so moved by what this poor young woman must be going through on a daily basis. Her struggle is real – never feeling rested, always on the brink of exhaustion, and constantly mentally sluggish. My father felt so much concern for this poor young woman and everything she has to go through just to get through a normal day. He recognized how lucky he is that he is not in that situation, without even thinking of his own condition and how much he, himself has been through. I was able to sleep well on the hospital couch that night, content with the reminder that I was doing all of this for someone so incredibly kind with endless compassion for others.
Appointment with the Eye Dr.
At the eye doctor visit, he didn’t do his regular schtick where he walks in the exam room, arms out, groping around as if he is blind and can’t see the chair, but was silly nonetheless – see pics of his behavior above. We go to the eye doctor regularly, not only for routine check ups but also because the brain tumor caused a permanent loss in his visual field – one of the reasons he’ll never be able to drive again. This isn’t noticeably something that impedes him. He’s not walking around bouncing off walls or anything of that sort, but sometimes can overlook something he is looking for even if it’s right in front of him. This never happens with food though… never with food. He seems to have an ability to spot a delicious treat a mile away.
While I was checking out and setting up our next appointment, I noticed my father at the business card caddy, picking up the card of each doctor in the practice and carefully examining it, placing a couple in his pocket. At times, he takes an interest in odd things so I didn’t think too much of it but certainly teased him on our way back to the car for having left no business card unturned, to which he politely chuckled. Once in the car, he pulled out his cell and dialed one of his friends that he has not been in touch with much post-tumor. He left a voicemail for this friend, a medical sales rep, explaining that he was just at the optometrist’s office and noticed they may be in the market for a product he represents. He asked him to call him back so that he could share the contact information of some of the docs he may want to contact. To my surprise, this was the reason my father had been searching through all of the business cards. It was to help a friend. This was a humbling moment where I was confronted yet again by the depth of my father’s thoughtfulness.
Wellness
Non-medical, good-for-the-soul-type activities this week included lots of time spent with the dogs, healthy meals, visits with some of my friends and a trip to the Hofstra/Towson lacrosse game with my brother’s family. My father played lacrosse at Hofstra and has remained a loyal fan. Pre-tumor, he’d make a point to see them play a couple times a year, whether that meant a trip up to NY or somewhere local, so it’s important for me to help him carry on this tradition. He needs to feel that he’s still living a well-rounded life, and ensuring he can continue to participate in and be engaged in his interests and hobbies is a huge part of that.
Despite the loss on Saturday and some outbursts of frustration in reaction to some of the plays, he enjoyed being at the game and spending time with his kids and grandchildren. It was a beautiful day to be outside in the sun and to top it all off, my brother saw a bald eagle flying above the parking lot on his way out, bringing us up to two bald eagle sightings in a little over a week – surely a good sign.
I’m not certain if I can adequately express my gratitude for the overwhelming outpouring of love and support I’ve received from so many of you since going live with our story. To know that we are not alone and have such a strong community of family, friends, coworkers and beyond, routing for us and lifting us up in your thoughts, renews my strength and provides encouragement to continue. I’m so very appreciative of the comments you left and will respond to each and every one. While every message flooded me with warmth and appreciation, the messages from those that knew him before – especially from Mt. Carmel – were especially moving. Hearing the impact my father left on your lives and that you recognize the same greatness in him as I, is profoundly touching, although, not a bit surprising. My father treasures the memories of his days at Mt Carmel and speaks of them often. If you’re a former student of his, reading this, I may have even heard a story or two about you! ; ) Not to worry, every one of them is told with delight and usually involves the phrase, ‘they were such a good kid!’
Last night, a close friend asked me what the target audience for my blog is and this got me questioning the same of myself. First, I’ll say that I’m humbled and honored that anyone would take time to read it and while I hoped people would, I went in with zero expectations for that to be the case. Except for my husband, that is – he’s kind of obligated to check this out, so I did figured I’d have at least one reader. Otherwise, in my wildest dreams, I hoped, on a broader level, that sharing this may provide a means to connect with others in a similar situation, or raise awareness of the importance of fully paid FMLA so that others are able to care for their family if needed. The Baby Boomers are aging after all and who better to care for them than those that love them? Being that there will be an element of wellness and self-care woven through this, I also hoped it might appeal to anyone who also values wellness and an adaptation of a holistic lifestyle. Finally, on a personal level, I hoped it would bridge the gap between my father and those that he’s touched throughout his life, so that they could see that while he has gone through a lot, he is coming out on the other side still strong, still fighting and continuing to enjoy his life in the same comical yet insightful was as always.
As I have been writing this, it has not escaped me that I am so tremendously fortunate to have this opportunity. Many of you, including close friends of mine, have lost parents or loved ones suddenly, or in a manner that didn’t provide you the ability to spend this kind of time together before they were gone. My heart is with you and please know that I am fully aware of how blessed I am to have this time. Stay tuned for an update on Week 2 and again, thank you…
For most people, their first love is their parents, at least, that was the case for me. First my mother and then my father. Loving me unconditionally from the beginning, it was from them that I learned what love is without ever having to be told. It was evident in the way they held me, sang to me, read me stories and made silly faces in hopes of making me laugh. Two years later, I’d learn a different kind of love, thanks to the arrival of my little brother. With him, I learned what it felt like to want to protect and care for a person other than myself, and my world was then complete. I was surrounded by the three most special people in the world.
Growing up, I knew I could rely on my parents for anything. They could remedy any sorrow, answer any question, heal any boo boos and scare away any monsters under my bed. My mom taught me to be kind and loving in how she cared for my brother and I and the rest of our family. Everything she did, I wanted to do and everywhere I went, I wanted her to join – she was my best friend. She was the youngest and most beautiful, in my opinion, of all the other room moms at school. At a very young age, she showed me how to eat healthily and use food to nourish the body, brain and soul, as well as the importance of exercise to maintain health, energy and overall fitness. Without knowing it then, she was the OG wellness guru in my life and fueled my passion that would eventually set me on my current journey and pursuit of wellness, health and fitness for my father and I. All that and she was the coolest Mom around and I wanted to grow up to be just like her.
My father was a force of nature. He was always incredibly fun to be around – the kind of guy who has a special magnetic charm about him that attracts friends and followers in any circle. He could be described as a combination of an intellectual history buff with keen interests in studying many diverse cultures, arts and literature, while also being a big-time jock from Long Island, NY. He grew up playing lacrosse and football and went on to play both at Hofstra. He was smart, athletic and strong. So strong in fact, that when he confided in me one night as he was tucking me in to bed, that he was actually an undercover superhero known as Daddy Man, that fought for justice alongside Superman and BatMan nightly while I was asleep, I wholeheartedly believed him.
At some point between then and the age of 40, I learned the truth, and that while he wasn’t actually Daddy Man, he certainly was my hero. He continued to be the strongest person I knew and the strength wasn’t only physical – it was in his sense of discipline, integrity, spirituality and most overwhelmingly in his devotion and love for his kids. You can imagine my shock and devastation when I received the call May 3, 2016, informing me that a tumor had been detected in my father’s brain and that he would need immediate surgery to remove it. The diagnosis of CNS lymphoma, a rare type of brain cancer came within a week or two after the craniotomy and our lives changed forever.
A year and a half later, when the opportunity arose for me to become the primary caregiver for my father, I gladly seized it without thinking twice. At this point, he had completed an experimental round of treatment for this specific type of lymphoma and was in remission. While the cancer was at bay, the challenge was and still is, learning to cope with the damage to my father’s brain incurred by the tumor, the resection of it and a subsequent brain bleed that occurred later in the summer of 2016. While my father had survived brain cancer, life as he knew it would never be the same and the real challenges were just ahead.
Choose Joy
Choose joy. Don’t wait for things to get easier, simpler, better. Life will always be complicated. Learn to be happy right now. Otherwise, you’ll run out of time.
found on the wall of dear friend, Stacey Friedel’s office. I don’t think she wrote it, but I’m crediting her.
The brain damage was primarily to my father’s right frontal lobe. Symptoms of frontal lobe damage include, memory loss, impairment of judgement, changes in behavior, reduced motor skills, attention deficit, and ability to express emotion, among others. You can think of his brain like a file cabinet with all contents still inside, but no folders to keep them organized. Memories or thoughts may come out at the wrong time, or sometimes they may be spot on. His memories of the past are much clearer than current day. While we’ve lived in our new home together for a year now, he still at times will refer to it as a hotel and ask when we’re going home. If you were to ask him how long ago he was diagnosed with brain cancer, he may tell you it’s only been a few months. Some days he’s clearer than others and more like his old self and some days he’s content sitting and watching nonsense TV for hours – something that would have never interested him pre-tumor. To say there have been some major personality shifts is an understatement, however, there are some core pillars of his personality that never waivered.
He continues to fiercely love his family more than life itself. His children, grandchildren brothers and parents are always at the forefront of his thoughts. Because of the confusion, he’d often believe he had just been sitting with his mother or father (both deceased in the 90’s) and in those moments he seemed so happy to have seen them. Over time, this has improved and while confusion is still a struggle, it rarely now leads him to believe his parents are still here with him, but he still talks about them daily, about how much he loves and misses them. Everything though, revolves around his kids. While as a child, he was the center of mine, I see that my brother and I are now the center of his. Even when he was in the hospital, undergoing chemotherapy at Hopkins, clearly the patient, he’d assume that everything that was happening was somehow related to my brother and I and he was just there as our dad, to make sure we were OK. Nurses would enter the room to check on him and he’d question them, ‘How do you and Danielle know each other?’ or ‘How long have you and Danielle been friends?’ This was a symptom of his confusion, of course, but it gave me insight into how he was processing these events and in his world, he was there to help me, be my dad and meet my new friends.
He remains spiritual, always being thankful to God for his blessings. Often he can be found with his rosary, praying the Hail Mary under his breath. Looking at pictures of his grandchildren or walking the dogs outside on a beautiful day, he’ll exclaim, “God is good!”
He loves music just as much as he always did, if not more. His tastes are wide and varied – so much so that I feel to list a few of his favorites would be a disservice. He’d laugh at this, but I’d consider him a music aficionado. Music brings him joy, calm and relaxation. For hours he can sit and watch the Music Choice channels on TV and then bestow all of the interesting facts he’s learned upon me. For instance, did you know Aretha Franklin once got out of having to pay a parking ticket by serenading the ticketing officer? He’s always humming a tune of his own or one of his favorites – I’ll often hear him in the bathroom singing Sam Cooke’s ‘Chain Gang.’ When undergoing chemo, he wrote a little jingle about Methotrexate. It would be better if you could hear the melody of course, but if you know my father, hopefully you can imagine how it sounded. It’s not a great song, but how many people do you know that make up their own songs about their chemo treatments?
Methotrexate, methotrexate It is what I ate To get rid of the cancer, to get rid of the cancer insert whip sound effect
Finally, as may be obvious from above, he loves to laugh and along with his love of his family, God and music, is one of the primary reasons he’s been able to not only survive all he’s been through, but also to begin to thrive again. His jokes are frequent and they are corny – they always were, actually. He may have created the mold for the original Dad Joke. He sees humor in everything and spends most days either making me laugh or laughing at something I’ve said. A casualty of living with someone who laughs at everything you say is that you grow to believe you’re actually very funny. This can be easily remedied by spending time with your husband who will remind you otherwise.
What impresses me most about him, is that my father doesn’t consciously choose joy – he just is joyful. He doesn’t have to lecture himself not to wallow in the fact that he’s no longer able to be independent, has lost his ability to drive, play golf or do any of the things he used to love doing. His life has changed drastically and he gracefully accepts every change (well, most of them…) with the wisdom of knowing that change is constant and unavoidable. He reminds me that ‘life is something that happens while you’re busy making other plans’ and I think this outlook has been instrumental in his ability to adapt to his new condition. His optimism, resilience and love of life continue to inspire. He is strong still, evident by his relentless dedication to overcoming his illness and subsequent brain damage.
Post-tumor chess match. Yes, he won….
Since becoming the primary caregiver for my father, I’ve been living with him, in hopes of bringing him some joy and companionship – juggling my life: job, relationships with husband, friends and other family, as well as personal responsibilities, while managing his overall care, treatment plan and finances. A typical day for me would consist of taking my father to see a doctor or therapist, laptop in tow, attempting to continue to work as much as possible through the appointment. Upon returning home, I’d work for the remaining portion of the day before it was time to prepare his dinner and then return to work again, trying to work overtime to compensate for any time missed due to the earlier appointment. Breaks would consist of sorting through my father’s mail, ensuring all bills were paid, prepping his medications for the week, or sitting and chatting with him. Answering questions like , “Do you have any idea how many people have ever lived on this earth from the beginning of time?” or “How old is Krystal Koons?”or ”Were you ever a contestant on The Voice?”. It was a packed schedule and it required a lot of focus and mental energy but it was all worth it because I love my dad and I love my job. Weekends, I’d go ‘home’ to the place I used to live with my husband and spend time catching up with him and friends. Getting away to go home or to sometimes commute to the office was possible due to our full time live in aid, Patricia.
Wait, I know you’re thinking, you have a full-time live in aid!? Yes, having Patricia is a gift. She’s wonderful and a perfect fit for my father. She is devoutly religious and has a deep love for God, loves to laugh and has a lot of similar interests to post-tumor Dad. Her responsibilities are to provide supervision of my father at all times, ensure he’s taking his pre-set medications at the right times, prep his meals if I’m not home, and to do all housekeeping for him. With her support, I can get time away when needed, knowing he is safe and with someone who genuinely cares for him.
Last month, when Patricia shared with me that she needed to travel to Togo to honor the passing of the patriarch of her family, my immediate thought was, ‘OK, this is going to be tough, but I can manage. I’ll work remotely during this time and can sacrifice the weekends at ‘home’ with my husband. Often I’m too tired to go anyway. I can buckle down and handle everything I have been handling plus the upkeep of the household , knowing she’ll return in several weeks and I’ll get a break then.’ It wasn’t until talking this over with close friend, Chih, that I even considered the option of requesting an official leave from work. While Chih helped me see that the break was needed, even if Patricia hadn’t needed to travel, it was another close friend, Kim, who helped me deal with the guilt and realize that while I possibly could handle everything while Patricia is away, it didn’t mean that I should.
Someone I was once close with used to say, ‘should is an interesting word’ and he was right. In fact, it can be very negative, depending on how it’s used. Why did I feel that I should absorb all of Patricia’s responsibilities in addition to managing my father’s day to day on top of continuing to work in a role that regularly demands night and weekend hours? The answer was and still is because I didn’t want to let anyone down – not my colleagues, or myself. I thought the definition of success was to be able to manage all of it without asking for help or let anyone down. Despite constant encouragement from colleagues at work to take this opportunity to focus only on my father, and knowing it was genuine, the fact remains that my leave from work leads to additional work for my team and that is hard to sit with. I’m beyond thankful to my friends and colleagues who helped me realize not only that not taking this time may lead to regret, but als that it’s OK to take a break and ask for help.
I’m now on six weeks of approved FMLA and it’s the best decision I’ve made for myself and my father in a long time. It allows me to focus on our wellness as a unit – not only ensuring he gets what he needs to continue to heal, but also that I am well enough to be able to continue to provide the level of care required to not only help him improve but ideally to restore him to his former self. In the past year, he’s made significant progress. All of his doctors have commented on how much clearer, engaged and energetic he is. I’m thrilled at this but even more encouraged by how much progress he could be making with more free time on my hands. Is it too lofty a goal to hope that he can be fully healed and regain his independence? Can he return to pre-tumor Dad? I don’t know for sure if that’s possible, but I’m choosing to believe it can happen, because what I do know is that if I don’t believe in the ability of that miracle to happen, it won’t, and I do believe in miracles.
I now have the time to help support and reinforce the strategies he’s learning in Speech and OT at home. Meals can now be elevated to even healthier and more creative recipes that would have been too involved for me to create before. We can exercise together, which is something he is not able to motivate himself to do alone. Instead of him having to plop himself in front of the TV while I work, we can do puzzles, play chess , color in adult coloring books or plant a garden. We can get out of the house together for daily excursions visiting museums, local parks, or my brother and his kids. All of this stimulation and engagement in the world around him is bound to be good for his brain and motivation to continue to work hard at recovery. We can do any and all things good for our brains, bodies, hearts and souls. It is a time to focus on all-around wellness for the both of us.
This blog is to chronicle our joint pursuit of wellness, to share with our friends and family and anyone else who may be in a similar situation (and if you are, I’d love to hear from you) how we use this time to thrive. It will be to hold myself accountable and to ensure that my time on FMLA, these 42 days of dad, is used to maximized every potential my father has at a full recovery and to ensure I myself am well enough to help him heal completely. We’ve got six weeks and we’re going to make the most of it.
Week 1
So, what have we been up to? Day one had me feeling all kinds of hopeful, with tons of motivation and conviction to absolutely crush every goal we have over these next several weeks. Our first appointment was with a nutritionist at Hopkins. In the past 3 years, my father has gained over 50 lbs due to a combination of lack of physical activity and ability to self-regulate how much he eats. The weight gain brings other complications – high blood pressure and blood sugar levels, as well as contributing to even more lethargy since moving around isn’t as easy as it was before adding on those 50 lbs, so we’ve really got to get rid of this weight.
To my father’s delight, the nutritionist recommended he follow the Mediterranean diet. He was less than thrilled when he learned that despite the fact that meatballs and lasagna are Italian, they are not encouraged on this diet. Regardless, we left with renewed ambition to lose weight and commit to a health diet.
Tuesday’s appointment was with his audiologist. Not much to report here, other than a corny joke, asking the doctor if she could see clear through his head when she looked in his ear. Surprisingly, his hearing has not worsened any, which doesn’t jive with the fact that I have to repeat myself multiple times when talking with him. I think that the brain damage, combined with his hearing loss really impacts his ability to understand, in that he can’t use his ability to reason to figure out what someone has said. For example, if he asks me what I’m doing and I say I’m doing laundry, it should be obvious to him that even if it sounded like it, I did not say I am talking to Cardi B.
It didn’t take too long for my first reality check of how difficult this was going to be. I had what I thought was a perfectly planned out conversation I wanted to have with my dad and his Occupational Therapist about how we needed him to be committed to the goals she’s helping him accomplish and proactive in practicing them at home. This instead sounded to him like we weren’t recognizing how hard he was trying and he felt like he was being disciplined. He got angry, snapped at us and told us that he did not like that conversation at all. This stung and took some of the wind out of my sails. I’ve had to work hard at processing this and reminding myself that this journey is going to have it’s ups and downs and as hard as I’m trying, I can’t control every outcome.
I decided the rest of the day needed to be salvaged and figured he’d love nothing more than to go to his favorite restaurant in Fells Point, Thames Street Oyster House. This place is special to him for a couple of reasons – first because it’s located in what used to be the apartment where he lived in the 70’s and second because it’s one of the only places around where he can get full bellied clams. I’ve been trying to keep him on a mostly plant-based diet, but days like today call for an exception. We followed up a delicious lunch with a tour of the new Pendry hotel and he was happy again.
Thursday’s appointment was with a spinal specialist who is going to do a procedure to alleviate the back pain he feels from his spinal stenosis. As we were sitting in the exam room, waiting for the doctor to come in, he turned to me and asked me, “What are we trying to sell this doctor today?”. Before retiring and becoming a high school teacher in the early 2000s, he spent decades as a highly successful medical sales representative. In that moment, he must have been thinking we were some kind of father-daughter sales team duo, in there that day to make a sale. Luckily, when I reminded him we were the patient, not the sales person, he quickly remembered that to be the case, so I took that as a great sign.
Friday involved a visit with his accountant to get his taxes done and was followed up with a lunch with a high school friend of mine, Kirk. Dad ordered the cheese steak egg rolls, despite the gentle reminder of the Mediterranean diet he’s supposed to be following. Seems like he’s going to stray from this diet whenever we go out for food and I’ll have to accept that, rather than fight him on it, as it never results in a pleasant experience. Going out to eat was something he always loved to do, so I want to be able to continue to give him that experience. The quality of the meals at home are even more important, given this.
The weekend was chock full of wellness activities. Thanks to the sunshine, we were able to spend a lot of time outdoors. We went on walks with the dogs – we even had a bald eagle sighting on one! Bald eagles were something Dad was always on the lookout for, even pre-tumor, so they were always special. These birds were once very close to extinction and the fact that we can sight them flying over the water across from our house is simply amazing. We did some gardening, de-cluttered the house, and made some delicious vegan meals. There was also lots of rest for Dad in anticipation of a busy week to come. Quite frankly, there was a lot of rest for me too, apparently it was needed. Week 1 had its ups and downs, but was overall a success as we navigated our adjusted schedule with our new ability to focus all of our time and energy on him and his recovery.
The Stay at Home Daughter 