The gifts

My therapist, as she prepares to depart and go live the life I had envisioned for myself—to travel the world ceaselessly until she drops dead while teaching English as a second language—tells me to consider the gifts of my husband’s disease.

It’s like a bucket of cold water. It has a wet, stinging, eerie feeling about it.

As she repeats almost exactly what my own plans had been, it takes me right out of the present and into some other dimension, a sort of mindful observing. It’s like Elizabeth Gilbert’s version of “the idea” had visited itself upon me and found that I couldn’t accept it and  so moved on—to someone else.

It’s like magical thinking manifesting itself all over my reality.

And the gifts. It seems cruel to me to tell someone whose husband has been diagnosed with dementia to consider the gifts of their situation. Perhaps she meant the three books she gave me upon parting?

But ok, I’ll play. The gifts are as follows:

The biggest, most significant gift has been that my husband’s dementia has unhesitatingly separated out the people who love me and who are there for me from the people who don’t and who are not. I’m surprised that I don’t feel more deeply about this, that I’m not more hurt by this. People who I really thought would be there in this kind of situation scurried away quickly. Disappeared from my life as if they had never existed at all. And, people who had not been around, who I rarely talked to or saw but who always mattered to me, these people amazingly stepped forward and stepped in. And I am truly grateful and amazed by their presence.

The next gift is closely related to the first and this is that when these people who I loved and thought I could depend on walked away, I survived and actually felt lighter. I easily let them go instead of clinging to them, hoping they would come back. I realized that people have to be there for you because they want to, and if they don’t want to, there’s no use in trying to coax them in. If you present someone with horrifying information about yourself and they run away, that act conveniently answers every question you could have had. So from this I felt stronger and realized that I got back some time that I had been devoting to thinking about these scurriers.

Searching my brain for gifts…Well, I suppose that the recent reading I’ve done has been a gift. Learning about nonviolent communication has been a big gift. Listening to Brene Brown’s Rising Strong has been a gift. Listening to Elizabeth Gilbert’s Big Magic has been a gift.

Finding my husband’s doctor and learning how to eat for better health has been a gift.

Finding my husband’s doctor and being in the presence of someone who has such a positive vibration has been a gift.

Do these gifts offset the depths of despair and my deepening awareness of terror?

My husband’s doctor asked me: are  you afraid? (He was referring to chiropractors, but there was subtext which was: are you generally a fearful person?)

Refusing to be embarrassed, I chirped: Yes! Fear is one of my best friends. We hang out a lot.

I love Elizabeth Gilbert’s description of Fear in Big Magic. She says that Fear gets to come along on her creative journeys, she acknowledges and makes room for it and even invites it, but her fear never ever gets to drive.

A gift. Having Elizabeth’s words in my consciousness and her voice in my head. Yes, that is a gift.

Magical thinking? Could that be a gift? Learning more about neuroscience. A gift? Standing up to neurologists. A gift?

It seems to me that the most important gift so far in all this madness and confusion has been the realization that I can’t spend time on people who walk away. I can’t run after them, I can’t spend time thinking about them. And I can’t harbor hurt feelings that they are gone. I have to just let them go, like leaves on the surface of a pond, let them float away, all the way away, and as I release them, I have become indifferent.

 

 

 

A friend in need…

When I was a kid, my grandmother filled my head with all these sayings:

  • A friend in need, is a friend in deed.
  • A rolling stone gathers no moss.
  • The early bird gets the worm.
  • Blood is thicker than water.
  • Birds of a feather flock together.
  • Early to bed and early to rise makes a man healthy, wealthy and wise.
  • No man is an island.

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.

 

Getting to know parts of myself

Word Wabbit has entered therapy. I found someone who specializes in caregiver therapy and dementia. She doesn’t accept insurance, so my wallet is taking a beating.

Insights from our first meeting. I need to find a caregiving agency close by. They typically take insurance and will take care of my husband and household chores at home while I work or get away for a few hours. As things worsen, this will be a must have.

Goal Number One says my new therapist: Deal with my grief.

I stoically agree. Tears run down my cheeks at the worst times, but for the therapist, nothing.

She prods a little. Restates my problems. Nothing.

Shows kindness and understanding. Nothing.

Calls my situation “heart-breaking.” I feel like a robot.

I’m not as easy as all that.

Crying in therapy is sort of like vomiting after a wild night out. You know you’ll have to do it, but you put it off as long as possible. The reality of it is daunting.

I was nearly ready to throw in the towel. This isn’t going to work for me, but she said something that I’ve been thinking lately.

Lately, I’ve been thinking that I have this part of myself that doesn’t want to cooperate with all this. Doesn’t want to accept it at all. No way. I like this part of myself—a lot.

Then there is the good part of myself. The part that wants to do the best job possible for my husband. This part wants to go shopping and make all his meals and monitor his diet and make sure he eats his blueberries. This part researches the brain and watches all the videos and translates the MRI. This part is no fun at all. But this is the part I respect. This is the part I show the world. That other part is the secret part. The part that whispers to me about island vacations.

My therapist says I have to make peace with these different parts.

I got home tonight and my husband seemed fine. It was a relief. Then he critiqued how I put the groceries away and my heart started to fall. The weight of the world began to bear down on me again.

“What do you want from this?” my therapist asked.

I want to be the best I can be for my husband. I want to accept this situation and deal with it. I don’t want to let it crush me. I still want to be me.

 

 

The Caregiver’s Dilemma

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.

Gulp. Silence.

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.

 

Caregiver burnout – and not even started

A friend talked to me a few years ago about his mid life crisis. He was pushing himself too hard at work and everything eventually fell apart, except work, as he is still tremendously successful. But his marriage fell apart and he had never had children and there he was facing 40, already a world traveler, and he didn’t have it all.

I had lost the women who raised me to cancer and watched them pass. I had been bullied at work. I had hit the proverbial glass ceiling. My husband hadn’t worked in nearly a decade. My dog was old. I was five years older than my friend and yet, I wasn’t completely freaked out yet.

Maybe for him it was something he could do in a big way and get it over with. One really big burst of freak out and then it was over and he was back to being the tremendous success he was always meant to be.

But for me, I think it’s been a slow burn, which started when I realized that my mother was hoarding and then I realized she was an alcoholic and finally here I am realizing that my husband has inflicted numerous head traumas on himself and here we are at dementia.

And where’s my world travel?

There’s no decent thing to do but be present and participate. And how do I do this and stay sane?

Is my hold on sanity so tenuous? Maybe I’m just whining.

As I moved all of our things to our new apartment, as my back was aching and my arms were giving out, I repeated to myself: I am strong. My mantra. We had discussed personal mantras at work. That is mine: I am strong.

Mantras have to be short because you’re usually out of breath when you say them.

That’s all I could muster at the time.

It helped.

My coworker, who I seem to be at odds with going on 8 years, informed me of the usefulness of routines. (My internal voice was saying: boring. My inner artist rebels against routines.)

But I suppose you could think of routines like jazz. You learn them, but within them you can improvise. So I can schedule my daily walks, but they don’t have to be in the same place and what I do whilst walking is up to me. So maybe he has something with his routine advice.

Yesterday was difficult. I was thinking of who I would grant power of attorney. I put myself in the situation: I’ve been in an accident and can’t make financial decisions. Who pays the bills? Who keeps my life going so I can come back to it? Who will I allow into my personal financial life? Who do I trust to stay away until I need them?

I felt sick thinking of it.

In the last few days, my husband has wanted to belt me once and has screamed at me “full bellows” twice. I’m not one to scare easily, but I got up and walked away.

Is this my new life? Looking for triggers. Avoiding them?

The Alzheimer’s page gives advice, although I can’t imagine it was written by anyone with firsthand experience. I’m exhausted and we haven’t even gotten started. He is still him, just missing a few things. Planning and problem solving are gone, but he still laughs. He still understands. And he can still remember things and learn simple new tasks.

Maybe these things should give me hope. But hope will slay me in the end.

Routines. I’ll take the advice of the coworker I’m caged up with day after day. That and unpacking all these boxes. The count started at 91 and now it’s down to 37. I have either given these things away or have put them away. I should feel good about what I’ve already accomplished, and a small part of me does. But part of me wonders how I ever got into this situation. My friend, mentioned above, doesn’t have a box problem.

And there are 37 left. How many more weekends is that?  All the treasures of my family. And they are gone. Keeping their things makes me think they could come back, will come back, I guess. When I let go of their things, I seem to be letting go of them and it hurts.

And the books, although I’ve given away hundreds, there are still too many. Dovlatov’s Life is Short is on my desk now. Unfortunately, it’s in Russian. I haven’t seen an English translation. I stumbled through the first page yesterday, hating my awkward pronunciation the whole way and yet marveling at this language; it still strikes a chord in me. What is this mystical connection?

Жизнь коротка. Yes, it is.

A tribute to zombie food

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.

If I was going to start a movement…

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:

  • We pay too much for the service we get.
  • Doctors are often unprepared and insensitive.
  • They don’t spend enough time with us.
  • They don’t hear us out.
  • They judge us based on our profession.
  • They don’t have good listening skills.
  • They aren’t empathetic.
  • They are pharmaceutical drug pushers.
  • They apply band-aid treatments instead of getting to root cause.
  • They insult our intelligence.
  • They insult us in other ways.
  • They forget that we are in charge of our health.
  • They forget that we are hiring them, not the other way around.
  • Often they aren’t knowledgeable of natural treatments.
  • They are rude and interrupt us when we are trying to speak.
  • When prescribing drugs, they don’t explain the potential side effects.
  • They are not healers.

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.