Back in 2020, I wrote about the ways my family coped with my mother-in-law, Em's, early onset Alzheimer's and Lewy body disease diagnosis. We had found a good rhythm and enjoyed accompanying her on walks to nearby parks, scenic drives with her favorite snacks in tow, her 15-min naps followed by her unpacking every cupboard in the house in search of something she couldn't quite remember, and then coaxing her to stay with us for one more day when she'd pack her over-sized pocketbook to head "home" in the evenings. It took a lot of love and patience to cope with her condition, but staying informed and consistently communicating with each other was the biggest gift we could have ever given ourselves. We had monthly check-ins with her neurologist who was absolutely phenomenal. He conducted memory tests so that we would be aware of the rate of her mental decline and then we went over our daily routines, her diet, and everyone's personal feelings so that we could figure out the best ways to support Em and each other. He would send over relevant medical studies that related to our situation and helped broaden our perspective on what we were experiencing. Life, although different than any of us could have ever imagined and sometimes terribly exhausting, was beautiful because Em was the happiest we had ever seen her.
Fast forward to November 2022. One evening after taking a shower, Em complained that she was feeling a lot of pain in her right breast. After a battery of tests and biopsies we found out that she had stage 3B inflammatory breast cancer. It hit us like a ton of bricks. At the age of 65, she was now battling Alzheimer's, Lewy Body Disease, and Cancer, and she had no clue what was happening. My husband and I have no children which made it much easier for us to assist my father-in-law in caring for Em. My sister-in-law visited and helped when possible, but while battling her own emotions it weighed on her deeply how she would explain the situation to her daughter, who was 10 at the time. Prior to getting sick, Em had been a big part of my niece's life and found ways to celebrate her and be a part of every milestone as best she could. Even with Alzheimer's, Em knew that my niece was someone important to her, but chemotherapy ravaged her and stole the few memories that she had left. Despite her kind temperament, she became completely dependent on us to help her move, eat, and bathe. Looking back, there are three things that helped us get through that difficult time that may help you and your family.
STAY INFORMED.
Whether you are an adult or a child, knowing what to expect helps anyone function better in any environment. This is especially true when you are going through situations that can be traumatic or life-changing. Our family found it easier to deal with the worst of Em's condition, because we were able to mentally prepare for the inevitable thanks to the support of a wonderful team of doctors, endless research, strong faith, and amazing friends. We built out a timeline of best/worst case scenarios and did our best to celebrate the little wins in her health journey. I recently came across this fantastic article by the Mesothelioma Hope organization that breaks down the ways you can discuss a cancer diagnosis with a child. However, I've found that the steps outlined can be applied to any ailment that can cause fear and anxiety in a child or an adult.
PLAN. PLAN. PLAN.
While we don't want to focus on the negative and optimism is essential for those going through any difficult health experience, having a plan in place for when a health crisis happens is very helpful. One of the most important things I can encourage you to do is select a health proxy and complete the necessary paperwork in advance so that they will be able to execute all of your health wishes if you cannot verbalize it. Em had one in place and it made it so much easier for us to make medical decisions in her behalf when she could no longer do so.
Secondly, if you have chosen to care for your loved one at home create a schedule that accounts for medical visits, care of loved one (bathing etc..), meal prep, home cleaning, recreation, rest. Be honest about what your strengths are and the strengths of those assisting you and focus on consistently handling those tasks. When everyone takes responsibility for their task each week, it makes it ten times easier to get through the day. Which brings me to my next suggestion...
ASK FOR HELP.
I pride myself on being independent. While that's fine and dandy, burn out is a real thing and you are doing yourself no favors trying to do it all on your own. You'll find yourself exhausted and resentful. For my husband, father-in-law and I it was important that Em live at home with us as opposed to a care facility. We knew that it would be difficult because of her many health issues, but we utilized as many of the resources available to us from her insurance and programs we learned about from her doctors and friends. When the three of us became overwhelmed, we cut back on some unnecessary things and hired someone to assist us for a few hours each week where we needed help the most. We also learned to accept help from others. I know it may be hard, but SAY YES! I've always struggled with not wanting to be a burden to others, but learned how much of a supportive village we had by allowing others to comfort us when we needed a shoulder to cry on, and to feed us when we didn't have the energy to cook another meal.
Dealing with a health crisis can be difficult, but utilizing all tools and community at your disposal can make it easier to bear. I am working on building out a list of resources that have helped my family, but it would be great if this community could share any doctors or resources that were helpful to you so that we can uplift and support families that are going through any health situation. Whether it is a name of a physician that made you feel seen and heard, a group of clinicians that offered excellent care, a health plan that is at a great price point and helpful to both single people and families, free health resources -- whatever you can share will be much appreciated!
💛MB