I talked with a woman the other day whose husband recently suffered a stroke. He is struggling with memory loss and the resulting freedom loss, while she is struggling with a million questions about what she should do.
That was me about ten years ago.
Our conversation reminded me of the emotions and struggle of those times. In many ways I still feel inadequate and ill-prepared for my caregiver role, but I can see now I have managed to gain a few insights over the years.
Something is Wrong
The first stage for me was a growing realization that something was wrong, that the issue was deeper than mere absent-mindedness or forgetfulness. This was a very lonely stage. It seemed as though only I could see Caleb’s brain faltering. I would point out, “He forgot we watched this movie 2 years ago.” Others would say, “Oh well, that could happen to anyone.” And maybe it could, but I lived with him for a long time and it was unusual.
He forgot conversations – he forgot to lock the doors – he forgot to put his tools away – he forgot people’s names. But, apparently I had unreasonable expectations. No one is perfect!
What Do I Do Now?
Then he forgot to pick our daughter up from school. It happens. Until he reminded me it was Tuesday and she had Girl Scouts. It was Tuesday, but Girl Scouts had only ever been on Wednesday.
I worried. Do I just chalk it up to a harmless momentary lapse, or do I quickly make other after school arrangements? Even if I was inclined to let the situation slide, the school staff insisted I never allow this to happen again.
As the memory lapses produced more serious consequences, these were the types of decisions required of me. Should I take away his responsibilities and privileges? Or do I continue depending on someone with intermittent memory? I wanted him to contribute as much as possible, but not at the expense of our kids’ security.
I didn’t want this kind of responsibility. I never asked for it. I love my husband and my kids and will always do whatever is necessary to care for them, but how was I supposed to navigate these daily issues falling on my shoulders?
Although Caleb’s cognitive problems caused more work for me, the work was not the hardest part.
I felt as though I was handed a job I had no business attempting. I had no training in caregiving! I didn’t know what was happening or why or how long or what would happen next. I had no clue what was best for him or our kids. Worst of all, I didn’t even know where to get the information and training I would need!
Meanwhile, Caleb viewed me as the thief who stole his independence. And though I tried to maintain a safe and stable environment for our young children (ages 5 – 13), I failed. My entire family was unhappy and upset with me. If they did not outright blame me, they thought I should fix things.
So, to sum it up, the super organized neat-freak was tasked with caring for a person with mental illness and brain injury while raising three children and supporting the family. My reaction was to do what I always do – conduct research, analyze the data, and get the situation under control. My family was counting on me and I had to succeed.
I did read and learn a lot about PTSD and brain injury. I talked to anyone I could with similar experiences. And information has been helpful with management and decisions. But the most important lesson I have learned is the opposite of gaining control. The real key to survival is letting go.
Mourn the Loss
In a very real sense, I had to let go of all my hopes and dreams. Overly dramatic, you say? Well, it is not as tragic or hopeless as it seems. I still have hopes and dreams – just not the ones I had when I graduated from high school, or when I got married, or even when the babies were born.
The man I married was substantially different from my current husband. I’ve talked previously about seeing the unchanged core person sometimes, and that is important to me, but our relationship is skewed and most of our plans will never be. I had to let go of that man I married – and grieve the loss – to move forward with the marriage that is happening now.
The same is true for all the losses. I grieve over the strange and scary home our kids grew up in and my life goals I can never achieve. My plans weren’t wrong or bad. But apparently they weren’t what God had in mind. When God picks you up and plops you in a different path, grieve over the previous path – then let it go and embrace the new path.
Trust in the Lord
Another aspect of letting go was understanding and accepting the limits of my responsibility.
Transitioning from partner to caregiver was painful and foreign. I am organized and responsible, but not naturally controlling. I prefer everyone to manage their own affairs and pull their weight without my involvement. However, if a responsibility is mine, I expect full cooperation (i.e. control) . . . which is an unhealthy place for caregivers to live.
I certainly accept the duty to make reasonable decisions for my family, but I can’t possibly manage all circumstances or prevent a certain degree of chaos. I find the Serenity Prayer annoyingly helpful in navigating the fine line between supportive caregiver and overbearing boss.
“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
If a situation calls for my intervention, I will step up and do my best, but I won’t guarantee a result. If anyone (including me) expects me to control the behavior of anyone in my family, they are just out of luck. I definitely identify problems and work toward solutions, but everyone, including my family and I, has to accept the reality of our circumstances and my limited ability to manage them.
Stuff will happen!
It’s not my fault and that’s okay. I may not be able to fix it, and that’s okay. But whatever happens, God is leading, guiding, sheltering, and providing – and that is Amazing!
