What’s in a Name? That Which We Call a Caregiver Still Counts ...

VA Caregiver Support Logo

This post’s title is an homage to the famous line from Romeo and Juliet: “What’s in a name? That which we call a rose by any other name would smell just as sweet.” Shakespeare knew names can be irrelevant but not strip the meaning of the thing itself. So, when does the name “caregiver” matter? In my case, when you are trying to get services and care for your spouse and yourself. 

I can proudly share that the Department of Veterans Affairs now officially recognizes me as a Veteran Caregiver, seven years after Russ retired from active duty. The government is nothing but efficient … I say with the most facetious of tones I can muster.

This was not an easy undertaking, and we have much more to do but I am pleased we made it this far. Last year we applied for caregiver support on caregiver.va.gov, filling out all the forms and permission waivers to speak to his various providers. We thought it a little silly because his primary care is through the VA and the military medical system but apparently those two don’t speak to each other. The application was signed and submitted in July. Then we didn’t hear anything for a while. 

Late in September, amidst the hubbub of our firstborn starting kindergarten, we got a call saying we had 48 hours to complete the evaluation process. We were shocked because we had heard nothing up to that point. 

We changed our work schedules and scrambled to fit in all the interviews. Luckily, they were virtual but they were very triggering, for both of us. In the span of two days, we spoke with three separate intake providers to relive the traumas Russ had sustained and to discuss and somehow prove all the things I do for Russ as a caregiver. I understand that there are some people who may try to take advantage of the system, but it was utterly humiliating to share in detail with three separate strangers how I help my spouse bathe due to limited mobility and nerve damage, for example, among many more of his daily needs. We shared what happens when he gets triggered and disassociates and how we have phrases and words to bring him back to reality. How his memory is affected and we have external systems to remind him of basic tasks but I still have to follow him around the kitchen to turn off the stove or put away the milk. And even more personal details about our love life. It was difficult to think of all the little things I do because now it has become second nature. It was especially disheartening when the primary intake nurse dismissed all that I do as “just something I should do as a spouse.” Excuse me for thinking that I am my own person and caring for an adult as I would my children is not my role as a spouse. Don’t get me wrong, I love my husband and will continue to care for him, but it wasn’t always like this and his memory continues to worsen.

October rolled around and still more radio silence until we got a notice that our application was incomplete and would be denied since we were only allotted 90 days to finish everything from the date of application. Our hearts sank. What hadn’t we filled out? Did Russ forget to share an email with me? Did I overlook something? It turns out that that primary intake nurse no longer worked for the VA, not by her choice, and all her cases were in limbo. We had to start at the beginning with all those same embarrassing questions. We had a new case manager who would do everything she could to get our application completed and submitted in a timely manner. And she did!

Although I was not selected for the Program of Comprehensive Assistance for Family Caregivers (PCAFC), I was placed in the Program of General Caregiver Support Services (PGCSS). And we have been encouraged by the new intake nurse to appeal or reapply because she believes we have a chance for PCAFC given everything we shared with her, so we’ll see.

For now, it feels as if a great weight has been lifted from my shoulders. You would think, by now, that I would know who I am, but the simple recognition and actual title from the Veterans Administration is a huge relief. I can finally be taken seriously as a part of my spouse’s care team. They finally recognize the work I have been doing for YEARS, long before he ever transitioned out of the service. I did not realize how much resentment and frustration I harbored over this until I got the phone call and burst into happy tears. I believe my response was, “Thank goodness! I mean … thank you!”

The overwhelming resources and connections I have made in the short weeks following their decision have been amazing. I am getting the help I need to support our family’s needs. It is a blessing and a curse because I now see how much we have missed out on for so long. Now, we have access to care and support in a way that should be provided for all veterans no matter the rating of disability. And it goes without saying that I also believe vehemently that healthcare for all people should not have to be earned.