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