Resilience is Strength

One day, I was struggling to put on a pair of high top shoes. My toes were curled up, my foot would not move. I was getting very frustrated. Armando, sensing my frustration asked, “why do you keep using those shoes if it’s too hard?” . At that moment, all I could say was “because they are cool”. 

shoes, Wonder Woman, cool shoes
How ’bout them kicks?

Later that day, I had more time to chew on the question “why do it if it’s too hard?”.   If I don’t do something because it’s hard, I won’t be doing anything at all. 

Many of the things I do are difficult. Taking a shower, getting dressed, cooking and going up the stairs are just a few examples.

Resilience in the face of resistance  

The American Psychological Association (APA)defines resilience as “the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress — such as family and relationship problems, serious health problems or workplace and financial stressors. It means “bouncing back” from difficult experiences”  

Stroke recovery is not linear. There are moments when I feel victorious, conquering every obstacle that comes my way. I have celebrated small victories like being able to use a can opener and  making dinner on my own. Sometimes, all I could do is get out of bed.

My own brain tried to kill me and now it’s  sending the left side of my body false messages: No, you can’t bend your leg, no you cannot use your fingers separately. So, everyday my job is to retrain my brain to how to properly communicate with my body.  The resistance is sometimes hard to fight. But I plug along everyday.  

I get frustrated, depressed and angry. I’ve had goals met and goals I just wasn’t able to complete. I have cried myself to sleep too many times, my poor husband is probably thinking I am slowly losing my mind. Then I wake up the next day, if ever so slowly I get up and out of bed and face my challenges head on.

Resilience for me is not a choice, it’s a necessity. I can have a positive outlook on everything, but without having the ability to recover from setbacks, positivity will not be very helpful. Resilience allows me to learn to adapt & adjust, reset my goals and start over. Resilience what prevents me from wallowing in failure.

Developing Resilience

I would like to think that I have always been a bad ass bitch able to bounce back from anything life throws at me. Alas, I was not. I was a hot mess of self-pity and internal loathing. I eventually found ways to gain confidence and  strength. This hot mess became a hot momma. Then BAM! The stroke took that confidence away.

I had a choice: either curl up and slowly whither away or put on  my (clean & pretty) big girl panties and fight this shit. Resilience is not something developed overnight.

I am blessed to be surrounded by loving & supportive family and friends.   They help me keep my head up when I feel that I am losing this battle.

I have goals I haven’t met, no matter how hard I’ve tried. I have not given up on them, but I have adjusted and re-adjusted them so that my goals are manageable.  Giving myself room to take a break is crucial to my mental and physical health.

The APA gives these guidelines on how to build resilience. It does not happen overnight, but resilience helps in the long run. Our lives will be fraught with changes and surprises, some good, some bad. Our lives will be affected either way. It is how we react to these changes that shapes and forms who we become. Resilience is strength from the inside. It is power we cultivate, exercise & grow. 

How do you practice resilience? In what aspect of your life you feel you need to be more resilient? Let me know in the comments below.

 

Much Love,

Momma Berna

 

 

Aftershocks

Earthquakes happen suddenly, with no warning and if strong enough, leaves massive destruction at its wake. Then the aftershocks follow. Little tremblers that are just as nerve wracking as they could be signaling another big one.

I use this analogy because this is how I felt after the stroke. I get anxious whenever I get a headache or a tingling in my hands or feet. Afterall, the stroke literally caused a shift in my brain.

Post Traumatic Stress Disorder  (PTSD) has always been attributed to veteran soldiers returning from the harrowing experiences of war, survivors of tragedies such as accidents, personal assaults and natural disasters. What most don’t realize is that there are stroke survivors who also suffer from PTSD.

PTSD is a psychological disorder characterized by depression, anxiety, flashbacks and/or nightmares.  This study indicated that 1 in 4 stroke survivors suffer from PTSD and yet, it is not a well researched field. Stroke survivors often have huge physical recoveries to tackle, their emotional health is often put on the back burner.

When I was discharged from the rehab hospital, my family was given resources to help me recover physically. Appointments and referrals were set up for physical, speech and occupational therapy. Medical pros had to check my home to see if it was accessible to me. My family was even “trained” to help me transfer in and out of my wheelchair. They were given information on how to keep me physically safe. I  do not recall if my family was ever warned of the psychological toll specially PTSD.

FAST, stroke survivor, stroke, stroke prevention
Act FAST for stroke treatment

The stroke was caused by a blood vessel that burst which flooded my brain with blood killing precious brain cells. This according to the pros, was a direct result of high blood pressure. Armando and I became vigilant about checking my blood pressure.  If it was a bit high, I start panicking- which resulted in my pressure going higher. It was an ugly cycle. Every headache was surely a sign of another stroke. I would do the FAST (face, arm, speech, time to call 911) evaluation, but would be very upset because I cannot move my left arm, the left side of my face was numb and so was my leg. It was aggravating. I took a couple of ambulance rides to the ER only to be sent home embarrassed and upset. And inadvertently scaring my boys.

I read somewhere that lifting weights could cause strokes. I immediately emailed my neurologist, my primary care physician and  my physical therapist my concern. I was working with a trainer and weight training. They all told me to chill the fuck out (okay, in a very medically polite way) Mind you, I wasn’t lifting anything over 10 lbs. I could not even hold a 5 lb dumbell with my left hand. Ha!

After three years, I have managed to calm down. I still fear that a headache (which I don’t get often thank God!) is signaling another stroke.  I have a nagging fear that I will have another stroke and that one will leave me in a vegetative state. These little aftershocks haunt me in my dreams too. I relive the moment I had the stroke and I wake up screaming. Will I ever be able to NOT think about another stroke? I doubt it.  This is a reality I now live with.

However, I will not allow these aftershocks to stop me in my tracks. I take many precautions so that a stroke will not get me again. I eat healthy, exercise and avoid stress (yeah, that one is not happening).

For anyone reading who is a stroke survivor, please know that the fear of having “another one “ is not irrational. The anxiety is very real. Our fear is valid. Know that you are not alone.

Much Love, 

Momma Berna

Thank You and Thankful for You

Thanksgiving week is over, I hope that everyone enjoyed platefuls of turkey and stuffing followed by a tryptophan induced nap and have survived the annual mass hysteria known as Black Friday.  In the spirit of gratitude, I’d like  to give a

online shopping, friday, gratitude
How I Black Friday.

big shout out and a big thank you to the people who support, help and encourage stroke survivors and other survivors to lead more productive, healthy and thriving lives.

I am fortunate to be surrounded by amazing family who are also my caregivers: My husband, My children, my sister And my mom. My mother and sister-in-law also give tremendous help and support.

Caregivers give so much, it seems impossible to tell them how much they are appreciated. Material things will not be enough to express our thanks. I know this list is short, I have wracked my brain for answers and I cannot seem to come up with something that would be able to truly express my gratitude.

The Turkey Trot has become a family tradition. The family that wobbles together… The boys run, the husband & I wobble.
    1. Say what you mean. Our caregivers are not mind readers, we sometimes feel that they “should” know what is it that we want or need. Try not to say things like “it would be nice if I had a warm blanket” or “ Is there anyone here who could get me some water?”. It might be hard to ask, specially for the simple things we used to be able to do. But being direct, but polite eliminates a lot of misunderstanding and resentment.

2. Give them space. The first year after the stroke specially the first six months, I was worried about being left alone. I also did not like going outside. My family was held “hostage” by my fear. Armando, my husband was still working full time, so he would put in 9 hour work days, then come home and take over for my mom to care for me.  The boys were busy with school, so they help out when they can. Armando was essentially “on” 24/7.  He needed a break. I managed to kick him out of the house to hang with friends before he burned out. Since then we have learned that having some time for ourselves is essential for our sanity. He now works from home, so getting some alone time is even more important. The people who take care of us, must also take care of themselves, be it some time at the gym or going out with friends.  Time when they can just breath and relax without  having to worry about pain levels, medications or cutting up food. 

3. Encourage them to join a support group.  As much as we need support and other people who understand & know how we feel, our caregivers need the same. They need other people to be a sounding board, to get new ideas from and most importantly a place where they could bitch about us (Ha!).

4.Give your recovery your best effort. We all want  to get back to our normal lives and to be able to do things on our own.  Our caregivers want the same for us. Armando beams with pride when he sees me working out or doing physical therapy. I know in my heart he is happy to see me working hard and trying. He posts more photos on Instagram than I do!  Our loved ones our caregivers have invested a lot of time with us and for us. I feel that watching us work hard, putting in the effort and slowly make our way back to recovery is as satisfying to them as it is to us.

5.Say “Thank You”. Seems obvious, I know.  But there are times I forget or worse yet, I take their help for granted. Sometimes I get caught up with my deficits and self pity I fail to see how much my family does for me. Our caregivers give us the support we need: emotionally and/or physically. Express gratitude often and openly.  This simple phrase means so much.

I know this list is short and inadequate. I cannot come up with anything that would be able to truly express how grateful I am. Do you have any ideas? If you are a caregiver, what is it that you would like?  Please let me know in the comments!

 

Much Love,

Momma Berna

Speaking Up

In August of 2016, I opted to have a Baclofen pump implanted  in my abdomen. It was my hope that the pump would help reduce the spasticity in my affected leg allowing me to run again. Of course my decision was based on more than just running. I wanted to be able to keep up with my boys, be less conscious of how I walk and gain the confidence I had lost.  I understood that the pump is only a tool, and I would need to put in the work to reach my goals.  And I was and am willing to put in the work.  I stretched, exercised and stretched some more. I am putting in the effort to rewire my brain to recognize that my foot is actually a part of my body.

One year and two months later,  I have not seen much success from the pump.  I  noticed small changes like my foot no longer curls up allowing me to wear sandals again (yay!), my foot now lifts completely from the ground allowing for a much easier heel to toe movement. Although it still happens once in a while, my leg no longer swings out from my hip when I walk. Otherwise, the spasticity is still high which results in  my leg still feeling like it is 50 pounds heavier than the rest of my body, my knee still does not bend when i walk giving me a very awkward gait and poor balance. 

One might think that running is simply putting one foot in front of the other in a faster pace than walking.HA! The biomechanics of running is complicated so I will not even try to explain, but let the experts educate you.  

All my life I have been conditioned to listen to my doctor and to follow orders without question.  After all, doctors know everything, right? Naah.

My email to my doctor got an auto “out of office reply” so I am waiting for him to get back so I could discuss my issue with the pump.  I have been warned that the tone in my leg might be what is holding me up.  Hence, the hesitation to raise the dose.  I have told the doctor that I feel it is much easier to work with no tone, than too much tone. I’ve not tested this theory, but i am willing to try if I am given the chance.  I am willing to take the chance. So, bring it on!

I understand doctors are cautious, I understand there are protocols to follow but I know my body. I know how far and how hard I can push myself.  

The New York City Marathon is happening next weekend. NYCM is my bucket list race and it was my goal to run the 26.2 miles this year. I have not given up.

I may have overestimated the “power” of the ITB pump, but I do know that I had put in the work. And I am willing to put in more. 

Much love,

Momma Berna

 

 

To know Me is to Understand Me

I am sure you are all familiar with “knowledge is power”.  It is a well-worn adage thrown around as part of valedictorian speeches & candidate statements during campaign season.  Commuters have been enlightened by the phrase through bumper stickers for ages.

We expect professionals to be knowledgeable in their fields. Heck we expect them to be downright geniuses at their chosen profession. This is especially true for our medical providers.

Thankfully, most of the medical professionals I have met are very knowledgeable.  They have a very good grasp of issues related to strokes & their treatment.

Knowledge is gained through education & experience. Keeping up to date with the latest information, research & constant study helps expand knowledge in their chosen field.

But just because doctors know what they are treating, does that mean they understand their patients?  

Knowing how medications work, how our bodies are supposed to work and how those meds affect our body, are great qualifications, but for me it isn’t enough. 

As knowledgeable as my doctors and therapists are, I certainly would be appreciative if they also understand me as a person. Understanding is acquired on a deeper, psychological and personal level. I would like to be treated beyond being just a  diagnosis and medical record number.  I want this because if someone understands who I am and what my goals are, we could together forge clearer path to reaching that goal.

I met with a new physical therapist recently. As we enter her office, before I even sat down her first words to me were “You know, it has been 3 years, you should not expect too much progress right?” I slowly sat down, took a deep breath and worked on not crying my eyes out. I told her “ I will run again”. To which she replied “you could always try the paralympics”.  Her words hurt and hit me hard.  Not that paralympics  is a bad thing, but up until that moment the thought of being a paralympian has never crossed my mind. I was and is still convinced that I will regain my “normal” running legs. I wish she had taken the time to speak to me first, get to know who I am and talk to me about my goals before she abruptly told me about the paralympics. It would also have appreciated a little more information about the paralympics before she sprung it on me. 

The psychologist  I saw pretty much said the same thing. She gave me the “you’ve plateaued” speech.  I made an appointment with this psychologist because I wanted to talk about my frustrations and anxieties about my recovery. The first thing I told her was “I don’t want anymore meds.” She went through her list of questions, I opened up a bit. Then she says “I’m going to set up an appointment with one of our psychiatrist, he can talk to you about maybe adding more medications or increasing your dose. I met with her wanting to have someone i could objectively speak to  regarding my fears, anxieties & frustrations about my recovery.  I did not want  someone who will medicate me to numbness.  She continued to insist on medications. I did not make a return appointment.

Hospital staff & medical professionals are short on time. They are under pressure to get patients in & out of the clinic in order to serve more people.  But taking a few minutes to ask questions, looking beyond a medical record would mean so much to the patient who you will see on a regular basis. Be a person we can trust to not judge our deficiencies and dismiss our goals. Be one who is willing to help us reach those goals. If the goals are unrealistic, please meet us in the middle and help us to get there. Stroke survivors fight daily to overcome our deficits. Although, we have support from our family and friends It really helps to have our medical professionals understand us so that all of our bases are covered.  Healing and recovery goes on much smoothly if we are well supported.

What would you want your doctors or therapists to understand about you?

Do you feel that you are able to talk to your medical team and express your needs & goals?

P.S I have been seeing the same PT, we’ve had a couple of sessions since that fateful first meeting. I believe I have shown her what I am capable of achieving. Her & I are now working hard to get me back to running!

 

This is Me

I promised myself I would not allow this stroke to define who I am, that a stroke was something that happened to me, not what I have become. Until I realized that there is nowhere around this. I am a stroke survivor.

I am trying to embrace this “new me”, the survivor me.  I am a much more flawed version of my old self.  Looking at me, there is little to tell you that something is wrong.  It is only when I start moving that my deficits become evident.

There are days when I feel that my head is stuck under a fish bowl and everyone is tapping on the glass. I can see people and hear people, but they are much too loud and it is difficult to filter out the voices from the noise. Being in a crowded place overwhelms me and if it’s loud, I get even more rattled. This overload leads me to becoming tired and grumpy. 

There are  days when my brain & body is my enemy.  It is as if someone made a voodoo doll of me and he or she relentlessly sticking pins and needles on different parts of my body. 

I move a lot slower than I used to. Both mentally and physically. I used to be able to come up with a smart ass remark about anything. I am still a snarky, sarcastic smart-ass my  punchline are just delayed! I move slower. Being careful of every step and just simply dealing with the heaviness of my limbs.  I slow people down and I know it can be difficult to deal with me. I try to be considerate of the people around me. The difficulties I experience are not all visible.  I can’t even put words to how I am feeling sometimes. My family and friends rally me on, but I know it can be difficult on them too.

 I have been given a journey on a road I didn’t plan on traveling.  Fortunately, I have people around me willing to share my travels.  There are many times, I have to ask. It’s not always easy and I am slowly accepting  that needing help is not a sign of weakness.

What I have discovered is that inside this broken body and brain, I still see glimpses of my old self. The funny, sarcastic, smart, strong and determined me. I think that this old me is what keeps the new me moving forward.    

half marathin finish
One week and two days before the stroke, I finished the SF Nike Half marathon (13.1 miles)

Three years ago, I was an average mom and wife, living an average life and doing extraordinary things to stay healthy. I was running 10 plus miles a week and racing 5&10ks and some half marathons on the weekends. I was an average runner who was only competing with myself.  In October of 2014, I had a massive stroke. I was in and out of consciousness for about two weeks ( so I was told), and when I came to, my first words were “I need to get out of here, I have a 10k to run on Thanksgiving.” I was not aware that I had become disabled.  My legs, which took me to many finish lines and helped chaperoned many of my boys’ field trips were no longer working. My left hand and arm were paralyzed as well. That reality did not  hit me until the first day of physical therapy in intensive rehab. That was when I realized I had to learn to walk again.

This new me is cranky at worse and tenacious at best. There are days when I do not want to get out of bed and my biggest accomplishment is turning on the t.v. There are days when I feel I am ready to take on the world and in a small way, I feel that I do. I get discouraged, angry and get sad but I also know that some days I just need to put my big girl panties on and fight.

stroke suvivor, stroke survivor club, Stroke awareness

If you are reading this and you are a stroke survivor, I hope that I can offer you the information, support & encouragement you need to get through rough times. When you feel alone and  misunderstood, I hope to be able to give you company.  And hearing from you would also help me know that I am not alone. That there is a community we all can fall back to in tough and painful times.

If you are a caregiver or a family member of a survivor, know that we are very grateful for your presence in our lives. Although every survivor is different, I hope I could give you some insight into what a survivor is going through.

 

Much Love,

Momma Berna

Do You Have the Time?

Let’s talk about doctor’s appointments. No one ever really looks forward to them, they take up a lot of time and we don’t usually get the best news from a doctor’s office ( don’t eat that, lose this, start doing that).  So when we head to an appointment, we already some anxiety building up.

Earlier this week, I had an appointment with the Physical Rehab & Medicine doctor. My husband and I left the house one hour before the appointment which was 11 miles away. But this is the Bay Area and the traffic is a nasty bitch.  Even with the extra time, we were going to be late.  I called the office to let them know. The person I spoke with asked how late will we be, I said about ten minutes. She replied “Oh okay, that’s fine. If it’s fifteen minutes, we will have to reschedule”.  We made it and were only five minutes late! Yay! I checked in & was informed that the doctor was running 20 minutes late! Half an hour later, they called me in. As soon as I stepped into the exam room, I was once again told “the doctor will be right with you, he is with another patient.” Really ? Really? I called to tell them we were running late, they couldn’t have told me “ oh that’s ok, take your time. Tell you what, stop by and grab a coffee. “ Instead, I was sat in the exam room for another 25 minutes. I had done some complaining on Facebook and the only magazine in the room was a year old copy of Arthritis Monthly. It was a bad time for me to leave my Kindle at home.  I was scheduled for an adjustment of my Baclofen pump and Botox for my arm.  The doctor arrived, apologetic. He apologized for being late and he apologized for not having the adjustment machine! There is only one for the Santa Clara area. Hey, I know medical equipment can be expensive, but this is a big hospital system!

I  got Botox shots for my wrist & hand. I have to choose where I think it would be most helpful as I can only get so much Botox at a time.  The Botox is only effective for three months, so in those three months I have to work, work, work my hand! See, all these treatments are temporary. The hard work of re-wiring is all up to me.

I made another appointment for the adjustment,  keeping my fingers crossed they will have the machine that day. Getting to appointments is still complicated as I am not driving yet. The doctor wants to do another assessment.

Thank you for reading through my rant. I know it is WAY too much to expect to get a courtesy call from doctor’s offices to let their patients know that they are running late or them to consider that our time is valuable too. 

Have you had an experience similar to mine?

Does your clinic or doctor give you a courtesy call if they are running late?

Much Love, 

Momma Berna

I Didn’t Hit a Wall, I Straight Up Ran Head First Into It.

The Brazen Western Pacific race was my first ever 10k back in 2013.  I planned on making this year’s race as my first post stroke 10k. I trained, I was pumped and I was ready. I asked my son Vincent to run this race with me.

I had trained, I walked around the neighborhood, walking up the hill and even attempting runs around the city track. Tuesday before the race, I walked/run 4 miles and I still felt good afterwards.

So hopeful at the start line.
My favorite oldest son.

 I posted my flat runner on social media and admitted I was a bit nervous for the following day. I was excited to do this race with Vincent. My plan was to have him run the 10k, finish get his medal and then have him wait for me at the last mile. He said “No, I want to stay and walk with you”. He gave me a boost of confidence!  So we line up at the start, took the obligatory start line selfies and off we went! I decided to run intervals for this race. I did not use this method while training, but I figured it wasn’t going to make a lot of difference since while training, I run/walk anyway. I set my Garmin for a 2 min run 1 min walk. Vincent was goofing around (it’s nice to be at the back of the pack coz we had the trail to ourselves!) doing walking lunges during the walk phase on the intervals. Of course that didn’t last very long. Ha!

Cross Training?

We kept up with the 2:1 intervals. It was 9:30 and it was already getting warm!  I had lots of water in my pack so I wasn’t worried. Vincent & I were chatting and having a nice time. After the two mile mark, a very nice woman stopped me and told me how inspired she was to see me out there. She’s also had her share of health issues and she started crying, which of course set me off crying too!  She ran the 10k and was on her last mile. She told me “no matter how long it takes you to finish, the important thing is that you finish!” I had her words in my head for the rest of the race. I had to finish.

My son was very impressed with the kindness and encouragement of the runners. He asked me how I knew all these people, I told him I didn’t know them,  runners are just nice like that!

As we approach the turn around for  the 10k, my leg started spazzing out. When my affected left leg spasms, it will kick out uncontrollably.  I had to stop, stretch out a bit then continue. As with all Brazen races, the aid station was stocked with all kinds of goodies. Orange slices, candy, pretzels everything a runner needs to fuel up. I helped myself to some oranges hoping to get my energy level up again. We headed back. Vincent was getting very worried as I was  leaning onto him while walking. I was determined to finish. A few runners were stopping to ask if I needed pain relief, others asked if they could get a course monitor to get help. I really must be looking pretty bad. I urged Vincent to keep walking. I was slowing down, but I wanted to finish. We were at 4.20 mi! (yes, my kid thought it would be funny to take a pic of my Garmin at 4.20)

4:20, runner, distance
Somehow this is funny!

 I keep trying to convince him to continue we were so close!  Mind over matter right? Focus on the finish! One step at a time.  I had filled my mind with positive self talk (they didn’t work). I kept moving. I was willing my leg to move. I was literally talking  to my leg out loud “swing, land on heel, roll to toe.”  Since I was using my right to compensate for my left, I started having shooting pains going up my right leg.  Vincent was clearly worried. It was nearing 11:30 am and the sun was beating down on us. Many of the runners could tell I was in trouble. Vincent had already asked one of the returning runners to let people the next aid station know that we neeeded help (despite my protests).

At this point, the lines of communication between my leg and brain have completely stopped. My foot was rolling over at every step, my leg was frozen and i was completely hunched over to my right. As hard as it was, it was time to admit defeat.  A runner helped my son walk me to the bench. It was clear that walking was not happening. As we sat waiting for help to arrive, I was still contemplating the last mile. It was so close. I tried standing up, but Vincent held me back. I saw relief on Vincent’s face when the ranger’s truck finally pulled up and he had the a/c on at full blast.

As we were nearing the finish area I could hear Sam (the Brazen race coordinator)calling out the names of the finishers, the audience cheering and I could see the happy, triumphant faces of the runners. I was devastated. I had let myself down, my brain worked against me. I so wanted this to be a victory, not just for me but for other stroke survivors as well. I wanted my family & friends to be proud of me. I feel that I had let a lot of people down. The exhaustion that I felt from the race, did not measure up to the sadness, pain and disappointment I felt inside.

Now that a few days have passed since the race, I’ve had some time to think about what happened. Although I didn’t finish the race, I still tried my best. I am grateful to have a 19 year old son who still likes to hang out with his crazy momma. He and I got to witness the kindness of other runners who were willing to help and lend support when we were in need.

I have also received so many positive feedback and support from my family and friends. Am I still sad about this? Yes, I definitely am. I am also still experiencing pain in my hip and shoulder. My brain is still a bit foggy. Neuro fatigue takes a bit longer to recover from.

I am sad and disappointed. But I’m in no way stopping! I might lick my wounds for a few days, rest up the old noggin and come up with a better training plan. There will be another race, another 10k and I will come back!

Thank you, thank you to everyone who slowed down, stopped and offered encouragement, Advil, Bio-freeze and Gu. i know those few seconds mattered in terms of a PR.

I would like to give a special shout out to  my son Vincent for putting up with me. We had nice conversations and talked about anything under the sun.  He knew I wanted to finish the race, so he tried his best to give me emotional boosts and physical support. He was propping me up, urging me to keep walking. But it came to a point where he knew it was time to just stop. In his gut, he knew I could be in danger. I am grateful to him for looking out for me.

sons, family,love,stroke survivor mom
Vincent was my hero for the day.

 

 

Much love,

Momma Berna

P.S. I was able to connect with the runner I spoke with on the trail. Thank you social media! She is one brave, inspirational woman! This is her Facebook page: https://www.facebook.com/lifeinthedayofarunner

 

 

 

 

Who Takes Care of the Caregivers?

I know family dynamics are never static. No matter how solid a family’s foundation is, changes will happen. The stroke changed my family dynamics in a way not one of us anticipated.

Prior to the stroke, I was the planner of vacations, i driver of the children & the organizer of the things: events, school projects, doctor’s appointments, shopping etc. etc. I was also the finder of lost things. True story: when I was conscious enough in the hospital, one of the boys would ask where some things are in the house. I could from my hospital bed, give them  point by point directions to where the wanted/needed item was. Waze is not even that precise.

The realization that things will be very different when I get home hit me square in the face during family day in rehab. My husband, the boys & my sister were all there. They were being taught the things that they will need to assist me with after discharge.  I would need to be assisted to the bathroom, I will need help in the shower, getting in & out of bed, getting in & out of the car. I also learned from the occupational therapist  that my drivers license got suspended. 

sons, support group, hospital, love,caregivers,carer, rehab hospital, Kaiser rehab
My boys had to grow up quick.

The moment I left acute rehab, my family became my caregivers. With my husband Armando,  my primary caregiver.  He had to dole out my meds & make sure I take them on time (no he didn’t check if I was cheeking my meds), he had to learn to give me my blood thinner shots (thank God that didn’t last too long)  and had to help me keep myself presentable. My kids have to help cut up my food, get me around the house, and get me in and out of the car.  My mom, who should have been enjoying her retirement once again had to: prepare my food, push me in the wheelchair around the house, and generally fuss over me.

I am so very grateful that I had such a strong family behind me. My sister pitched in whenever she can, my in laws came by to help out.

It is a lot of  physical & emotional work being a caregiver. My job was to get well, rehabilitate and rest. Everyone else around me still had their regular lives to live. They still have jobs, school and homelife.  

If you are getting nursing assistance from an outside service, thank your lucky stars. For most people, it is family that takes on this role.

Armando being my husband/nurse has it’s up & downs. There are times when I can sense that Armando was being stretched too thin.  He will not openly admit it, but after 20 plus years with him, I had gotten good at reading him. Before he gets to the breaking point, I kick him out of the house.  I just want him to get a break. Get out of the house, hang out with friends and do guy stuff.  

One of the pitfalls of having family, specially your significant other, be your caregiver is the lines of your relationship becomes blurred.  He wasn’t just a husband, a friend, a lover any more. He was also my nurse. He was responsible for my physical & mental well being.  This past two years and a half years have put us  through the ringer. There are times when Nurse Armando was around more than husband Armando which led to resentment.  As I become more independent, Armando and I are slowly rebuilding and redefining our relationship.   We now go on regular dates, laugh like we used to, fight like we used to and talk like we used to.

llife companion, caretaker,rehab
Race walking together.

He is slowly moving away from the caregiver role and back to  the husband role. He of course still takes care of the boys and I the majority of the time, I can’t complain…erm… I am grateful to wake up mornings with homemade (not out of the box) blueberry scones.  We are talking about travel plans and not just treatment plans, we are focusing on healthy habits and not just taking my meds on time.

Life is definitely far from normal. I am still moving slow, I still need help doing things in the kitchen, but I am able to manage.

Our caregivers only want what’s best for us, but they must not ignore their own health and well-being. Caregiver burnout is detrimental to both the patient and the carer. Depression, anxiety and physical illness could be  manifestations of burnout. (Get more info here)

 

To other survivors out there, how have your relationship changed with your caregivers?

To the caregivers, how do you practice self-care?

Much Love,

Momma Berna

I Hit Send

Whew! I’ve had my mailing list set-up on MailChimp for like forever. The email where I invite people I know, people I have interacted with and family members to introduce them to my blog.  You see, some of them don’t have face-insta-twit or they are just  not a part of my social media circle.

I have had the list set-up, formatted, re-formatted for a couple of months now. I have been too worried to hit send because…well…I am afraid. I am afraid of rejection, I am afraid of criticism etc. etc.  But fear will not move me forward nor will it help me get my story out. So today, I clicked send.

But even with just one hand to type and getting seriously brain tired after a few sentences, I’ve got a story to tell! I may not tickle your fancy like E.L James, or give you nightmares like Stephen King (he, is the reason I am afraid of– no why I hate clowns).  So if this is your first time here on my blog, welcome. Stay for a bit, I hope you enjoy what you read and come back. If you have visited before, welcome back. I do hope you keep coming back.

Now that I’ve hit send remember I am just a girl, sitting by her laptop, waiting for you all to read my story 😉

 

Much Love,

Momma Berna