A Husband's Perspective
Both my wife and I were living on top of the world…Living our best lives. Then things took an unexpected turn and landed us in a world of uncertainty. Our lives changed over night. I thought I was going to lose the love of my life. Thoughts of raising our daughter without her mom brought tears to my eyes and feelings of hopelessness and helplessness. While the medical staff was doing everything they could to save my wife’s life. I was doing everything I could to console our daughter and family members.
The family started an online portal called PADLET to allow friends and family to post pictures and heartfelt messages for my wife. I read to her every chance I could. I believe this truly helped my wife spiritually.
I created a text thread titled Team Rachel to keep friends and family updated with my wife’s medical treatments and progress.
My wife spent two months in ICU and I was with her the entire two months. During the last few days before her release I was given training videos by the nursing staff so that I could become her caretaker when she got home. I was ready to do anything for my wife, but scared. It was daunting to know the complications that could arise if I didn’t follow the appropriate steps to administer antibiotics to my wife through an IV. It was now my responsibility to make sure my wife was I needed assistance. I had to educate myself quickly and before we knew it we were discharged!
I had such mixed feelings and even questioned the staff if they were sure my wife was ready to go home. I was nervous and had no idea what life we were returning to would look like. To add more anxiety the pandemic was very much on the top of my worries. To keep my wife safe from catching Covid I had to limit her exposure to family and friends. Visits from others had to be cut to a minimum; it was a very critical and vulnerable time. My wife was missing her bone flap which made me feel on edge. The slightest cough or sneeze caused her severe head pain.
Despite thetwo month inpatient rehabilitation services I was still at awe witnessing my wife make great strides towards her recovery. I knew deep down challenges, fears, and limitations were ahead and as her husband I vowed to be by her side no matter what.
The first few months were overwhelming at times. Making sure my wife was resting and comfortable was my top priority. I often found myself on the web researching support groups and forums in search of ways other caregivers used to give their loved ones comfort while recovering at home, for example; what brand pillows and motorized upright beds people used for those who suffer from the same brain injury. It was surprising to me there isn’t a market for traumatic brain injury pillows. I learned by typing in the key word “Stroke” I could broaden my search. I ordered all kinds of different types of pillows. Our home began to look like a medical supply store.
I soon realized that balancing work, home life, and caretaking for my wife was critical. I had to focus on managing the calendar to make sure we made it to all my wife’s appointments and at the same time make time to raise our daughter and perform the bulk of the household duties.
Navigating our new life together has been a blessing thus far. I’ve learned that treating my wife normally and not as a patient is emotionally vital to her healing.
I see changes in my wife’s recovery every day. I notice she doesn’t need my help as much. It’s been an adjustment for me to let go and allow her to be more independent but I’ll always be a constant source of support for her.
A Survivor's Perspective
My relationship with my husband quickly turned into a patient/caregiver situation when an aneurysm in my brain suddenly ruptured. Navigating life as husband and wife after a stroke has been challenging. My husband instantaneously saw me at a very scary and challenging time… I was very sick and clinging to life and he was preparing for the worst and then on top of that Covid was a real threat.
We’ve made it through so much together and now one year later, we get dressed up and go on dates to keep it fresh. Occasionally we turn up the music and slow dance to our song. Our love grows stronger and our bond to each other grows deeper.
Our new normal is adjusting our daily routines to accommodate my left hemi-paresis, left side vision impairment, and short-term memory function deficits. Tasks that used to take seconds to complete now take much longer. I use modified kitchen tools to make
meal preparation easier, because the weakness makes it difficult to grip or hold things. I’ve also adopted techniques to improve memory and organization. For example: before starting to bake or cook, I set all ingredients on the counter. I set a timer using Siri on my iPhone to remind me to turn off the stove or oven. Short-term memory deficit is real! It’s a struggle, but I’m finding ways to navigate it. During the week I keep a running grocery list on my phone and meal plan ahead of time. I’m unable to drive so I make sure I grab all ingredients on shopping day for the week to keep costs down. This is important so we don’t have to bear the expense of having ingredients delivered through Instacart. I meal prep for my daughter’s school lunches because it brings some normalcy to my life and hers.
My life isn’t the same as it used to be. I have a large left field cut in my peripheral vision along with significant weakness on my left side and short-term memory deficit. I’m navigating through the never ending paperwork of applying for permanent disability. I’m learning along the way and keep an extensive point of contact list of who to call for help and guidance.
I’m always in high alert mode as safety is my priority at every task at hand. Constantly scanning to my left is a big and often difficult adjustment. I’ve looked into prismatic lenses to help with my peripheral field cut vision loss, but the lens were not appropriate to my situation and could possibly be detrimental.
I work toward recovery everyday by setting a goal for myself. It’s important to me to get outside to walk to help improve mobility and fatigue, but most importantly to aid overall healing. I start on Mondays with a goal to walk for 30 minutes, each day after I try to walk a little longer. I keep an energy journal to help me gauge my trends. It’s so easy to overlook improvement. I look toward celebrating the small gains because it helps with momentum. My overall goal is to gain enough endurance to finish the Annual TAAF walk!
I have good days and some bad days, I lean on family members for emotional support to alleviate my anxiety and depression. I’ve learned to trust the process of recovery after experiencing a brain hemorrhage stroke. I often feel like I’m taking two steps forward and one step backward. It is not always easy to maintain a positive mindset. I know it’s ok to ask for help. I understand that more now than I did before. I give myself permission to have a good cry and to be vulnerable. That’s when celebrating the small gains is important. I give myself a pat on the back for showing up every day to become stronger and more independent. I’m learning to embrace this slower pace of life and I appreciate all that I have now.
My life and lifestyle dramatically changed overnight. At first it was hard to accept but I’m at peace with it now. It’s all about preventative care and moving forward to recovery. I know I’m not alone in the struggle of feeling sadness and frustration.
Brain aneurysm is hereditary in my family. We have two survivors and one loved-one lost.
I’ve begun to use my social media platform to spread awareness on brain aneurysm, AVM, and traumatic brain injuries. It allows me to share my story and to provide a space for those who are on their healing journey. I share videos and tools that have helped me along the way in hopes it will resonate with someone out there.
Not only am I navigating life after a ruptured brain aneurysm, my husband and daughter’s lives are too. Their lives have changed drastically. We’re navigating this post-stroke life together as a family.
There are two quotes I’ve adopted that have helped me overcome hard days.
”Minor setback for a major comeback!” and ”I’m high on life!”
A Daughter's Perspective
The morning I found out that something had happened to my mom I got a call from my dad around 5:30 in the morning. Without him telling me what had actually happened, I could hear the fear and concern in his voice. But, it wasn't until I arrived at the hospital that I found out how serious my mom’s situation was. I was speechless and frightened when I saw the looks on my family members' faces. All there was left to do was cry and wait, which felt like forever.
Fast forward to today, it has now been a little over a year since my mom was discharged from the hospital after the aneurysm ruptured in her brain. Life isn’t the same as it used to be. My mom and I used to go everywhere and do everything together. Due to her disabilities, it’s hard to do the same things we used to do. She has a vision deficit in her left eye that makes it so she can't see well peripherally so can't drive yet. It's challenging but even when we walk it's important that we go slowly and safely.
Now the new normal means we have to plan ahead. Because of the vision impairment, when we go out we both have to be constantly cautious and conscious of what is to the left to keep her safe. I always make sure I’m on her left side so I can be aware of barriers and dangers. It's challenging but important that we stay very aware.
My everyday goal is to make sure my mom is happy. I'll do things such as setting up the karaoke machine so we can enjoy each other's presence along with having fun. I also help her navigate social media so she can more easily connect with friends and family. During her early stages of healing, my dad and I were against the idea of visitors because of how fragile my mom was and the threat of Covid. We knew we couldn’t risk her getting sick or hurt.
I see my mom working hard to be her once normal self. At times, she gets frustrated but I always provide words of encouragement to make her feel better. It’s a work in progress.
This whole experience has changed the dynamics between both my parents and me. We’re all adjusting and trying to understand how to make the best of this situation. I’m thankful I’ve had my friends and family throughout this. Of course there were many times where I felt helpless and alone. It was so incredibly hard to see my mom in the state she was in. People including family members such as grandparents, aunts and uncles would come to me and ask how my dad was doing and disregard how was feeling. I felt support from everyone, but would often find myself alone and feeling alone.
I’m still trying to get used to having my mom home full-time now that she’s been put on permanent disability. I am witnessing her going through the highs and lows of navigating and accepting her new life.
My mom tends to be hard on herself. I see her try to reinvent herself by looking for ways to give back to the community or even in the kitchen. I enjoy her cooking very much. I know it makes her happy to feed her family. A fun new thing is she’s taking this opportunity to teach me how to cook!
I’m her biggest cheerleader on the side lines. I wouldn’t trade it for anything. My mom constantly tells me how proud she is of me for staying strong throughout this year. I’m proud of her, too.
My mom has made it her priority to talk to my primary care physician to get my brain screened because brain aneurysms run in our family. It feels great to have my mom advocate for me. I’m not gonna lie, it terrifies me knowing what happened to my mom can happen to me. But as I watch my mom overcome obstacles, I see and I feel her strength and I know I have that quality too-I got it from her. It naturally eases my anxieties around my paranoia of aneurysms.
I do lean and rely on my friends for comfort. On the other hand my mom relies on me for makeovers. I help her with her makeup and give outfit advice. My dad cuts her hair; my mom calls my dad and me her glam team. My mom is still getting used to her new hairdo. Before her rupture her hair was long, down to her waist, and she would often have it in braids. I can see she’s starting to embrace her new short pixie cut.
I know that it’s hard for her to see that she’s just so beautiful inside and out, but I’m here to remind her.
Post-rupture I’ve taken on a new role as my mom’s secretary. I proofread her emails and double check her Amazon orders, she’s notorious for ordering the wrong item and ordering more than she needs.
I’m a senior in high school;I worry about what will happen when I go off to college. I realize my mom now needs me more than ever. What if my mom needs me while I’m there? These are just some of my worries I have as I navigate this post-stroke life. When I remind myself my dad is here for mom, I get less worried.
My mom and dad are a great example of what a healthy marriage looks like. Even the hospital staff could see how much in love my parents are. I heard a nurse once tell my parents they could see true love in them. Some staff even said they were envious and hope to find love like my parents . I admire their commitment to each other. Their relationship defines the saying:
LOVE CONQUERS ALL.