It turns out that my husband’s illness is killing me. My cholesterol is through the roof and my doctor says that it’s not my diet that’s causing it, but stress. Stress. And as I look back on my life, I realize that I’ve been stressed for a decade now.
My mother’s illness and death, handling her estate, my grad degree, the job that followed that, and now my husband’s dementia. It seems that everyone on earth has been telling me to go get a therapist—and her advice? Leave my husband.
My dear friend who came to visit us said the same. Leave him. Forget those silly vows, get out now. And I have to admit, I thought about it. And thought about it. And cried about it. And prayed about it. And I asked for a sign. And the universe sent me a sign. What was it?
Are you f-ing kidding me? A peacock? That’s it?
The universe hates me. There is no other explanation. I’m being mocked. By. The. Universe.
But back to stress. Apparently my cholesterol is so high that it shoots off the allotted space on the graph. Everything else looks good.
Questions not to ask your cute-as-pie lender: If I run away and default on my loan, what will happen to me? I’ll never be able to return? Anything else? How far is the long arm of the law?
With all due respect, what kind of stupid sign is that?
When I was a kid, my grandmother filled my head with all these sayings:
I used to ponder them. I would imagine a stone with moss on it, rolling.
This week’s winner was: Blood is thicker than water. I keep thinking it over and over again.
I was eager to settle the power of attorney problem. I could see “future me” laid up in a hospital bed and my husband freaking out, not being able to cope. Who would manage things? Who would pay our bills—with our money?
I addressed this question to two family members and to two friends. It’s an interesting problem. The family members are people I don’t really know. I know certain things about them, but I haven’t really ever talked to them. We haven’t had a meeting of the minds. We’ve never spent much time together.
The friends, on the other hand, I have spent hours upon hours with. Days. Years have gone by and there have been numerous conversations.
Further breaking this down, one family member was mine and the other was my husband’s.
My friends ran.
Well, not literally. They were concerned that somehow they could be held financially responsible for me.
I tried to explain that this was more of a risk for me than for them, a huge leap of faith for me in fact. But they felt exposed and not up to the task. If I were lying incapacitated in a hospital, they’d be happy to sign the get-well card, but they would not be there, not in any real sense of the word.
My aunt, who I have seen once in my life as an adult, stepped up. She accepted, with “I’d be glad to help you.” My niece also said yes and that she loves us.
I am humbled that I can call upon people I barely know to do such an important and intimate task. I am truly grateful.
I am also saddened that the people I spend the most time with…well, how do I say it? I guess what I’m trying to say is that I realize that I spend a lot of time on people who like me, but up to a point. There are limits. They both felt bad about saying no. I had asked too much. I had ventured too close. And yet, if either of them needed me, I would be there without hesitation. What else is there to say. I feel empty.
There are even people from years ago who could call me out of the blue and I would be there, regardless of time passed, regardless of hurt feelings. I wouldn’t even want to talk about it. What’s wrong? How can I help?
I told my friends that I understood their hesitation. It was a lot to ask, if such a thing came to pass. It would be a huge responsibility. It would mean really stepping up. Brene Brown comes to mind and her talks on vulnerability.
I tried to shrug it off, but asking made me feel the most vulnerable I’ve felt in years. Just the fact that I needed to ask, the circumstances behind my asking, and that when it came down to it admitting that these two people were the people outside my family that I considered to be my best friends in the world.
It’s a lot to ask someone—to ask them to truly be your friend, when you really need one.
Don’t ask unless you can stand to know.
So it would seem, I don’t have any real friends.
But I suppose I do have family after all.
I’ve been struggling with this for years it seems, when my husband stopped working back in 2005, stopped trying, stopped being motivated.
He couldn’t. He just couldn’t.
This was hard for me to understand. I’ve always been so ambitious, so driven.
The years passed. I kept trying to encourage him. Maybe you could do this. Maybe you could do that.
Then finally, it was, well, at least you could do the chores. I’ll work. You do the housework. That’s fair. And so it went.
Now, since he fell back in July 2015, that’s all changed.
I had never seen anyone fall and lose consciousness before. I was terrified. Then there were 12 hours of vomiting and being in and out of consciousness at the hospital. Then there were the months of not knowing.
What’s wrong with him? Does he have Alzheimer’s? Dementia? Is it progressive?
The answers first were “no.” And, then they were “yes.” No, he doesn’t have Alzheimer’s. Yes, he does have dementia.
After he regains his ability to speak and converse, he begins to tell me. About the concussions. All of the concussions. About the time when he was five and his brothers rolled him down a hill in an inner tube, and the inner tube stopped and he didn’t. About the time when he was eight and his best friend threw a hammer to him and the claw stuck in the back of his head. About the time he fell off a backhoe. Off the skateboard. And off the bike. And there were more. I made note of them somewhere.
More recently he admitted that when he was a kid, he and the other boys would headbutt each other. The game was to lose consciousness. And then there was the military where they also headbutted each other. While drunk.
He keeps saying he’s sorry. At first,that puzzled me. The apology would come out of the blue. He would cry as he said it.
What for? I would say.
It’s not your fault, I kept thinking. But now almost a year into the realization that my life has changed forever, and that things are going to get a whole lot worse…well, now after the headbutting stories, I wonder.
I’m no saint. I’m not a terrible person either, but I’m not a saint. I’m not a martyr. I don’t torture myself in order to feel just. I don’t seek out ways to deny myself so that I can feel righteous. That’s not my deal. If I could take a walk in the woods for the rest of my life, I would be ok. I don’t really need much else.
So when faced with caregiving, I’m not super jazzed about it. I’ve seen my mother and grandmother die. This was caregiver training, I guess. These were short-term assignments in caregiving. And there’s something different about taking care of your parents. So yes, they did change as they aged and died. They turned more inward. They were harder to reach. They were angrier and sadder. But for the most part, they were still recognizable as themselves. We still had that shared history. There were still ways to make it back to who we once were.
In my current situation, I’m dealing with the loss of my husband as he still lives. The optimistic, excited, loving, caring, giving, participating, idea sharing, adventurous man I married has receded into the shadows, and all too soon. I don’t know what my life will be like from one day to another. The yelling. The crying. The aggressiveness. The absence of conversation. The absence of participation. The doctor’s visits. The drugs. The bills. The fatigue. The despair.
The last neurologist said he has CTE. This is the disease of modern American football, popularized in the movie Concussion. This is a form of dementia caused by multiple blows to the head. It typically ends in suicide, but sometimes in murder and suicide.
I’ll admit it. I’ve been wanting to run.
And I know this is wrong. Even thinking it is wrong. And yet, the bad devil on my shoulder has captured the stage. My mind spins with ways to escape.
But this isn’t right. He would be there for me, and probably without as much inner turmoil. The fear I feel has crowded out the mourning. The instinct of self-preservation is strong in me.
One of my friends has advised me to carry my burdens with a light heart. But most of my friends have disappeared. The fastest way to clear a room is to ask someone if they’d like to be your alternate power of attorney.
I read an article about holding space for people. And I’m touched when I think of the few people who are holding space for me. They aren’t who I thought they would be. The people I thought I could depend on are long gone. The people I never thought would be there are showing up.
So what is love? Marriage? Friendship? What do you deny yourself and what do you keep?
I woke up this morning somewhat relieved. I didn’t have the answer, but I had the question.
The dilemma of caregiving is that if you stay, you’ll hate your life, but if you go, you’ll hate yourself.
In a rare occurrence of whimsy at work, it was condoned for a short time that if we wanted to connect in a meaningful way to people, we would make comparisons to zombies. Needless to say, this didn’t catch on or last very long, but the idea sticks with me today as I think about brains.
Brains. We all have them. Not many of us consider ourselves smart enough to talk about them, but I think that by virtue of having one, we are entitled to our opinions.
TBI. TBI is a term I never heard before last summer. It stands for traumatic brain injury. And here all this time, I should have been much more interested in brains and how they work, but now that I know someone who has TBI, someone very close to me, the brain, and all of its magical workings, has become very important indeed.
I suppose in some sense, I am now a caregiver. I never imagined this role for myself and I’m not sure I naturally take to it, but here I am and I’ve got to make the best of it.
Sure, I could run. I could hop on a plane and scram, but my rather intact conscience would never let me escape. So there is nothing to do but face it “head on.”
What does TBI mean for my life? It means a gaping distance from my best friend. It means I understand the arguments we’ve had for years—now that I know he’s had more than 10 concussions. It means I have to be calmer, stronger, and more responsible than I’ve ever been before. It means anger and frustration for both of us. It means I have to battle my own resentments.
The fact is, people have been getting hit over the head for a long long time. And into each life some rain must fall. And every cloud has a silver lining. My silver lining is that maybe I can turn my own life around. Maybe with the knowledge I am gaining, I can take steps to improve my own chances of retaining cognitive functioning into old age. Maybe, just maybe, I can find the answers to heal my husband.
It’s been 7 months since his fall. And I know from my research that significant recovery should take a year or more. And the last neurologist gave him a horrible diagnosis, one that sent us both reeling, one that tests my faith in my own intellect. Do I dare to disbelieve?
On top of all of this, my husband has realized that he is mortal. He has realized in a very concrete way that he will die, actually die, some day. And now the midlife crisis begins.
There is an incongruence with the consideration of suicide and at the same time raging against the fact that one will eventually die. But brain injury is not logical.
In hindsight, I could have done better to log his progress. Where is he in his recovery? Language has come back. The stuttering has receded. Critical thinking is better. Decision making is still hard. I have to remember not to give him choices. This seems wrong, but the confusion and distress for him are too great. It’s better to offer him one thing that he’ll probably like. Driving is still out of the question, but going into public places, such as the grocery store, has gotten better. Household chores are still all mine. I would prefer to be the chief worrier in charge, but he worries a lot. I’m afraid for him, afraid that feeling depressed and worrying will become habitual, will become easier than feeling good and happy.
Staying on the diet is critically important and yet somehow hard to remember and enforce. More room for improvement. Ketosis is very important and needs to be maintained. Also a term I didn’t know before this started. The brain does better when it burns fat and not sugar. A ketogenic diet is one in which the body gets its fuel from fat rather than sugar.
And what about his heart?
From narcsisstic neurologists to battling nutrionists, this is the world of post TBI. A man’s life is on the line and yet we don’t know the answers.
You get hurt and everyone holds out their palms. The main thing they want from you is money—lots and lots of money. They prey upon your ignorance and your fear. They build their mansions from this money.
But this is the age of the Internet. Oh, blessed Internet, with information at the end of a thoughtful search.
Long live the socialism of knowledge.
The Surprising Truth About Wheat, Carbs, and Sugar—Your Brain’s Silent Killers
By David Perlmutter, MD with Kristin Loberg
Little, Brown and Company
New York, Boston, London
If the assertions that Dr. Perlmutter makes in this book are true, then we have all been deceived—and at a very dangerous level. Grain Brain turns the world on its head when it comes to diet and nutrition.
And since we all have brains, this is a book for everyone. Even though neuroscience seems like a weighty subject to tackle, this book is so well written that I found all of the scientific discussions easy to consume and understand.
In a nutshell: Inflammation is at the bottom of just about all human illness. Anything that causes inflammation should be avoided as if your life depends on it, because it does.
Continuing along this line, fat is good for us and is especially good for our brains. Fat does not make us fat, quite the opposite. Saturated fat is good and good for the heart. The only bad fat is a trans-fat. We need these fats to absorb all kinds of brain-healthy and body-healthy vitamins. Cholesterol is also good, and necessary. Yes, eat the yolk of your egg!
You can probably see this coming…carbs are bad. Carbs make us hungry even when we shouldn’t be. They spike our blood sugar, make us insulin resistant, and screw up our biochemistry in all kinds of terrible ways. Not all calories are the same.
The best diet: high fat, low calorie. Say what?
You’ll have to read the book. I found it convincing.
Green veggies are good, very very good. Broccoli, cabbage, asparagus, celery, miscellaneous herbs, spinach, arugula, etc., etc.
And don’t forget to exercise; figure out how to sweat every day.
I remember when I was a kid. Whenever I was thirsty, no one gave me water. They gave me coke. I think from a young age, my body has been battling this deluge of carbs to where normal weight loss became impossible. I always had a sneaking suspicion that the math wasn’t on my side. I would count calories until I was obsessive-compulsive crazy and increase my exercise, but only Herculean efforts could take the weight off. Finally, my goal was to plateau. If I just didn’t gain any more, I could hang on. And the cravings never ceased.
After trying Dr. Perlmutter’s advice, I am not driven crazy by cravings. After normal meals, I am satisfied and go do something else. I don’t know if he’s right about everything, but from my own experience, he’s right, at least for me, about eliminating flour and sugar, completely.
I have an issue with the non vegetarian diet, mainly because of the cruelty of CAFOs. Dr. Perlmutter advises us to eat humanely treated, grass-fed animals. This diet can, however, be applied to a vegetarian diet with the addition of coconut oil and olive oil. If you aren’t a strict vegetarian, I think you’ll get better results because you’ll also add fish oil and eggs.
I’m not going to argue Dr. Perlmutter’s points for him, he does an excellent job in his book, and he provides a list of references at the end. As you might suspect, this book is about brain health, and as it turns out the worst thing you can do for your brain is get type II diabetes.
Gluten also comes up as a real villan here. Perlmutter refers to gluten as a silent germ that we are all sensitive to. Gluten does damage before we ever know it. And once we progress down that path to Alzheimer’s disease, there’s no certainty we’ll find our way back.
Getting rid of gluten can help us will all kinds of seemingly impossible afflictions from cancer to depression to MS.
Dr. Perlmutter is the only neurologist/nutritionist in the United States. This simple fact baffles and amazes me. Why?
Why don’t Western doctors understand that the body is a complex system and that everything is connected? It doesn’t take a brain surgeon to figure out that what you eat matters.
Grain Brain is a truly fascinating read.
Well, there are tons of things I’d like to set right, but today, tonight, it’s the whole of Western medicine. If everyone who reads this could consider their last doctor’s experience and then if they felt as wronged as I do, simply write one letter stating what happened and how/why you feel ripped off, and make three copies of it.
The first copy should be sent to your doctor. The second copy should be sent to your congressman. The third copy should be sent to your local news outlet.
I won’t tell you what to say. All of our stories are different. Some common threads though are these:
This is what’s wrong with health care in the United States. The problem isn’t that everyone needs insurance. The problem is that we have given up our power and have handed over our wallets. We have stopped thinking critically when it comes to our own health.
But things have shifted in the last 20 years. Today we have the Internet. Today we have knowledge at our fingertips like never before. WE could change this. WE are the ones who pay.
If you or anyone you know has had any of these experiences, write a letter, make three copies, affix stamps, and send.