Warrior. Several friends (completely independently of each other) following our story have referred to me as a warrior. This is not how I view myself. I’m just a wife, mom, and friend doing what is necessary to help and protect my husband and family. Yet, after careful consideration, there may be some truth to his warrior moniker.
It has been a battle. But, why should it be so difficult to do the right, necessary things? The safeguards established legally and medically become huge stumbling blocks for a simple woman trying to navigate her way through a rare, terminal illness in her spouse. There is no road map that anyone provides. Three doctors advised (their only advice) to “get our affairs in order” when my husband was diagnosed with FTD (brain disease).
Here are just a few of the battles already fought. Yet, it feels like I am only on mile two of a twenty-six-mile marathon. I provide this list as encouragement and possible road map to others.
- Pushed for five years to convince a general practitioner, two neurologists, and a neuropsychologist in the medical community that there was something not right with my husband.
- Established a family history when there was none by obtaining critical medical records belonging to my husband’s father and talking for hours with the only living relative willing to share information.
- Insisted on specific testing when the doctors refused to believe the troubling symptoms in a 45 yr old man.
- Worked tirelessly to convince my husband’s family that he is not well and will continue to decline. There is only one outcome to this disease, and it will not be easy or pleasant. Even a proven gene mutation has not been enough to make them believe. Yet, I do not give up.
- Confronted a neurologist’s office about a HIPAA violation. Had to establish who was the decision maker and the one in charge of my husband’s care. It did not matter the profession of other family members or their relationship with the neurologist. I am the one with the most comprehensive knowledge of my husband’s symptoms and will continue to advocate for his care and rights.
- Protected my husband’s job and benefits by seeking advice from an employment attorney. Carefully got him under the FMLA umbrella and navigated a new relationship with the owner of his company before he could be fired. He is still working long after most with this disease.
- Met with an elder care attorney to establish financial safeguards and seek advice on making the tough decision to sell our house of 14 years. Based on the attorney’s advice, I updated beneficiaries, account titles, deeds, power of attorney’s and wills.
- Found, bought, and closed on a new house. Downsized our existing house by half resulting in letting go of many personal and sentimental items. This decision was driven to become mortgage free and create a less stressful living situation (smaller house and less “stuff” to organize and manage). It was also another important step to protect our finances.
- Prepared our vacated house for sale which involved cleaning, painting, hiring contractors, and significant yard work – plus emptying it of too many belongings (lots of real estate agent help and friends to accomplish this one).
- Resigned from every volunteer activity I participated in, in an effort to save my time and strength for my family. Gave up my personal career ambitions to keep my focus where it should be.
- Visited our local Veteran’s Affairs office to determine the benefits afforded my husband. Obtained paperwork and spoke with the veteran’s nursing home to pave the way for future care.
- Met with school counselors to establish a “village” approach to supporting my three children’s emotional needs.
- Informed coaches, youth group leaders, swim team families, and friends of our plight when my husband really did not want the diagnosis shared. It was to build our absolutely necessary support network and allow some grace for my husband’s troubling behaviors.
- Struggled with but ultimately decided to go public with our family story in the hopes that our safety nets would grow and others could step up and be male mentors to our boys.
- Asked for and have scheduled several key appointments for a driving assessment, genetic counseling, and occupational therapy.
- Applied for and received a grant to attend a national FTD conference to connect with the leaders in the fight against this disease and other caretakers in the trenches.
- Planned several big vacations to enjoy the remaining good times with my husband. Hopefully, they will also create special memories the kids can carry forward of their father.
As I review this list, I am awe of myself. Never, did I think I would have the strength to accomplish one or two of these items in the midst of paralyzing grief. Somewhere deep down, I’ve drawn on the various training and experiences of the past 47 years plus the support of some of the most amazing friends (siblings and mom) anyone would want in her life to handle each of these challenges.
Additionally, every morning I tell myself it’s time to get on my metaphorical “big girl panties.” Some days I purposely wear boots, because I know it needs to be a “kick butt” kind of day. There are certain jewelry pieces that I rub while silently thinking, “You can do this, Kat.” These may seem silly, but I keep telling myself – whatever it takes. My husband and kids are too damn important to let them down. So, warrior? Maybe. I’m humbled beyond belief that anyone would see me that way. I’m truly just a simple woman, mom, wife, and friend – with a kick ass attitude, when needed.