The Caregiver’s Brain

Greetings Friends,

I have not posted here in six months. My wife’s dementia has been moving at a snail’s pace. The days, weeks, and months have melded into a fuzzy blob of time, and one day is exactly like all the others.

I am nine and a half years into care giving, and the word “decade” will soon be added to the divisions of time used to describe my ordeal. Despite what I have read on this site over the years, I believed that my stint as a caregiver would not last this long.

I have been locked into care giving for so long now, that time feels like it has stopped. Friends and family are celebrating graduations, getting married, having children and grandchildren, taking vacations, getting new jobs, moving, even retiring; their lives go on and mine has stopped. The more time that passes, the more shocking it is when someone finally deigns to call or visit and update me on their (mostly normal) lives.

Nine-plus years of lost progression is immense. That is enough time for a student to go through medical school or law school. It is enough time for families to grow by multiple children and grandchildren. It is enough time for people to move more than once or twice. Even our cat: She was three and a half years old when this began, and she is thirteen years old now. Friends and family have progressed, scattered, and moved on without us. Sadly, it is also enough time for pictures of my wife and me (before her dementia) to seem nostalgic now.

Surprisingly, I am far less depressed than during my wife’s earlier stages. The simple explanation is that I have finally entered the Acceptance stage of grief. I believe there is more to it – care giving and forgoing my own shallow pursuits in life has rewired my brain. Care giving for nearly a decade is a whole different experience from care giving for a year or two. It is long enough for your expectations and priorities to completely reset.

I am very grateful for this reset in my brain. It may be a survival mechanism; whatever it is, it is a welcome change in me as a care giver. Here are some examples to help you re-frame your ordeal (as I have):

I have friends that visit a certain expensive theme park at least once a year, but usually much more frequently. Their travel stories were always enjoyable; I must admit that I felt a bit of envy and “woe is me” because a trip like that would be impossible with my wife’s condition. I was missing out. Over the past year or so, their stories no longer evoke envy. I am truly happy for them and enjoy their adventure stories more than ever. But I no longer want to go. Seriously – those trips seem trivial to me now, and I would actually RATHER take care of my wife in the comfort of our home. I cannot make sense of my own feelings and how they have changed, but I kid you not.

Similarly, my wife and I visit far fewer sit-in restaurants than before. Dining out was nearly a hobby for us. Any bit of good news – no matter how small – would be celebrated by dining out. But this is far more difficult now due to her incontinence and communication deficiency. Dining out is risky business and quite depressing without a conversation partner. However, over the past year or so, I really do not miss it. The noise, the fuss, and the cost loom large: I would RATHER cook, or grab take out and watch our favorite YouTube travel channels. I don’t feel like I am compensating or settling; I really just would rather have a cozy meal at home.

I am not trying to sugar-coat the losses that we caregivers suffer, and the sacrifices we make. I would love to be free to travel and dine out again whenever I want, but I am finding myself much more “ok” with skipping these activities and spending my time at home and in my back yard. Case in point – I look more forward to mowing the grass in the sun than going to some restaurant and spending $100 to have the same old conversations about nothing. Perhaps I am just getting older myself, and this is part of it.

My brain has been rewired to my situation. Activities that I used to “miss out” on just seem like a waste of time and money. They now seem shallow and pointless. Maybe that will change if care giving ends, but I welcome the brain reset. My own brain is helping me cope with this ordeal. For instance, I am far happier with a simple walk around the block with my wife, listening to a good album, or preparing a good meal for us. The simple life was forced upon me, and like the Borg, I have adapted. Although it may sound stifling, it is indeed a blessing to feel true joy about daily activities at home.

I wish you all the best. If you are stuck in this situation too, you may find it gets easier as your brain resets. This may not happen for everyone (or on the same timeline), but there is hope that you will find it easier in the future.

All the Best,

Bill2001

Author of “The Cavalry is Not Coming”