You might want to grab a cup of coffee for this one.

I have run into several stereotypes about caregiving lately. The one I encounter most frequently is the perception that caregiving is a burden.  The second one is that there is nothing left to look forward to, and the only thing I can plan for is for things to get worse. While I agree that a certain amount of planning is necessary, I don’t think I should base our lives on it. Nor do I want to fall into the trap of seeing caregiving as nothing but  a burden. That is a disservice to both myself and Jack.

Caregiving IS exhausting. It brings out my worst side more often than I’d like, and my best side not often enough. At least it seems that way.  But what I put into it depends on what I have inside me to begin with. If I’m tired, hungry, or dealing with a Fibro flare, that will color all my interactions with Jack.  I will be more likely to respond with frustration to his repeated questions or get impatient when he can’t focus enough to get moving. I will feel overwhelmed more quickly, and caring for Jack will feel  beyond my capabilities. But this is my perception of it. It has nothing to do with Jack.

Jack is simply (for lack of a better word) living the day to day challenges of Frontotemporal Dementia. He can’t control that. The forgetting, the sometimes hurtful remarks, the loss of his ability to communicate, his sometimes overwhelming anxiety—these aren’t within his control. As hard as it is for me, it’s even more so for him, because he lives inside it. He feels it happening to him and he can’t stop it. He looks to me to help him make sense of a world that no longer  does. And if I don’t work on changing my attitude, I can’t be what he needs. It’s that simple and that hard.

I can’t control how Jack will be on any given day. I won’t know what kind of day we will have together until we’re out of bed. But every day we have together is a blessing, no matter how he is. And it’s my responsibility to choose to see it as such. I must choose, sometimes many times a day, to take a deep breath and say thank you. To remind myself that, no matter how he seems on the surface, he is still my husband, the man I love. Otherwise, especially if I’m having a bad day, it becomes too easy to see him as a burden rather than as someone who is struggling. I don’t want to do that to either of us.

Which brings me to the next thing I’m often told—that it’s all downhill from here. I’ve been told, even by doctors, that there’s nothing that can be done, that the most I can hope for is a long, slow decline in Jack’s ability to communicate and care for himself. That the symptoms can be slowed but not stopped, and certainly not reversed. I must get all the paperwork—HPOA, DPOA, Living Will, Will, and funeral arrangements—drawn up while he is still able to think for himself and make decisions. I agree that this is necessary, and am getting this done. But again, his inevitable decline is NOT, and never will be, my primary focus.This focus can breed all sorts of negative thoughts and contribute to my viewing him as a burden rather than a husband. Which would make any challenge we face seem overwhelming.

And there are plenty of challenges. They range from small (finding misplaced objects) to medium (tackling one of many paperwork mountains) to large and seemingly unmanageable (cleaning out our van so we can send it to the junkyard, along with working and caring for Jack). If I viewed all of it as being part of an inevitable decline or a burden, I would be tempted to give up and jump off a bridge. Which brings me back to my day to day practice of choosing to see the blessings. I do it to keep myself going, as well as to take better care of Jack.

Seeing the blessings in every day is not always an easy choice. There are some rare days where I can’t muster the energy to look for them. Thankfully, those days are few and far between. I am hoping that with time, this practice will become second nature, and that I will always be able to see Jack as Jack. Not as a person in a state of decline, or as a burden, but simply as my husband. I owe both of us that

There is a side to caregiving that nobody talks about. It’s the one aspect that is not mentioned much in books or anywhere else. The books offer how tos for almost every situation. But no book can fully address the myriad details and interactions that make up a day. That side of caregiving is only learned by living it   And sometimes there are no words to describe what that’s like.

Like this morning. I’m sitting here at our cluttered table, trying to write this post. Which means I need to have it quiet so I can stay focused. But Jack is sitting across from me, laboriously writing down everything he remembers about yesterday. (something he started on his own to help himself remember). Which means he interrupts me multiple times to ask about correct spellings, to clarify something, or to complain that his pen doesn’t work. Which has led to my erasing this and starting over four times in a row.

This is a side of caregiving that doesn’t get talked about, perhaps because it’s such an intimate part of our daily life together. I get frustrated, angry, impatient and overwhelmed, sometimes within the first hour of getting out of bed. But I don’t like admitting that. I would love to be seen as someone who is eternally patient and loving, who has all the right responses at the right times, who can skillfully guide Jack through whatever crisis he may be in, without batting an eye.  And I CAN be that person, sometimes. More often, my own humanness comes out in all its rampant ugliness. Then my frustrated tears are for myself, because I’ve failed Jack again instead of giving him what he needs.

Being a full time caregiver challenges me to be a better person in all ways. This is not something books can teach. It has to be learned day by day, sometimes minute by minute through our interactions. There are no hard and fast answers on this road, no matter how badly I might want them. Just a lot of prayers and deep breaths, picking myself up and trying again, and hoping that over time I will actually learn more of what works. Hoping that I can become the person that Jack needs to have by his side on this road, someone who knows the way instead of someone who knows very little and is trying to figure out the way with him.

But maybe it’s better we’re learning together. We ARE partners, meant to walk hand in hand. I’m not meant to lead him, but to walk with him as he finds his way. Maybe my job is to take care of myself first so I can be a better travelling companion.

We are learning how to live all over again. How to work together, how to interact with each other, how to be a couple. Our old, comfortable ways of working and relating to each other have been erased. To use a horrible but appropriate cliche, it’s a whole new ball game.

Two weeks ago, Jack was diagnosed with Frontotemporal Dementia, Semantic Variant. In layman’s terms, this means he has difficulty with communicating, understanding words, and challenges with basic skills like running the microwave and handling money. He also has lost most of his short term memory, which means every day is brand new for him. This diagnosis, welcome as it is after four months of uncertainty, has irrevocably changed our lives. I  am tempted to grieve for the loss, but there hasn’t been time.

This new normal means that every day is an adventure. It means that I can no longer plan out exactly how the day is going to go, because i don’t know which husband I will encounter when we wake up. Will it be the husband who is reasonably well oriented, who can focus and understand, or will it be the “lost” husband, who is anxious and unable to comprehend much of anything? I don’t know which one I’ll have  until his eyes are open and he’s up and moving around. Which means I have to be able to shift gears with no warning.

I would be lying if I said I wasn’t scared. This condition, like most of the dementias, is poorly understood. From a medical point of view, there is no treatment and no cure, just a slow downhill progression that ends with 24 hour care and death. The progression can be slowed but not stopped. When I encounter these grim realities, I want to curl up in a corner and cry. This is not the way I envisioned our future, having to watch him disappear in front of me. This wasn’t supposed to happen, especially now, when things are going so well.

I have my dark moments. But then I remember that the doctors may predict, but only God can decide. I remember that “No cure.” and “There’s nothing we can do.” don’t mean that there’s nothing WE can do. WE can do a lot to make this adventure into a daily blessing, rather than being frozen in fear at the implications. It means being open and willing to see what this adventure has to teach us  instead of cowering in the corner with our eyes shut. It’s a daily choice, not always easily made. But the first step is the willingness to make it.