A Caregiver's Bill of Rights

When I first began to take care of my husband, Romeo, even before he was diagnosed with dementia, I didn't realize I was a caregiver. I thought that I was simply helping Romeo with things he could no longer handle himself. I didn't yet realize that his dementia would progress into something I wouldn't be able to help him with by myself, alone, at home.

No doubt about it. Caregiving is probably the most difficult job you'll ever have, the most difficult task you'll ever undertake. Yet, it is also in all probability the most rewarding. Whether or not you have come to the point of recognizing and labeling your caregiving role, you will discover that your job, this obligation you have undertaken, is best carried out with a "yes" attitude. By saying yes to being a caregiver to your loved one, you are equally importantly saying yes to doing all you can to take care of yourself. I reiterate: all caregivers are equally responsible for taking care of themselves.

I recently came across a Caregiver's Bill of Rights. It recognizes the humanity of a caregiver and gives permission for us to be fully human. Please know that you, as a caregiver, whether you are so new to caregiving that you don't yet know you're a caregiver, or whether you've been a caregiver for many years, are entitled to your own life, to acknowledge and fulfill your own needs. You are entitled to each of the rights detailed in these bullet points. Live your caregiving potential to its fullest and embrace these rights.

A Caregiver's Bill of Rights

I have the right . . .

• To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.

• To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.

• To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do something just for myself.

• To occasionally get angry, be depressed, and express other difficult feelings.

• To reject any attempts by my relatives (either conscious or unconscious) to manipulate me through guilt and/or depression.
  

• To receive consideration, affection, forgiveness, and acceptance for what I do from my loved one for as long as I offer these qualities in return.

• To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

• To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my help.

• To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

-- Author Unknown

Roasted Veggies for a Caregiver

How many times have I heard that caregivers need to take care of themselves first? Indeed we do. It's just like the flight attendants instruct us before our flight takes off: when the oxygen mask drops in front of you, put yours on first, then help others.

Same with caregivers. If you don't take care of yourself, you could wind up sick at the bad end of the scale, or in a lousy mood at the best. Neither condition allows you to take care of your care recipient well. And even worse, you could pass your germs or lousy mood onto the one you're taking care of. What a mess you'd have on your hands then! A caregiver's job has the potential to be difficult at each day's starting gate; make it as easy on yourself as possible. You are needed!

One of my favorite ways to take care of myself is to cook a special dish now and then -- something that smells good while it's cooking, something healthy and nutritious, something that is easy to make and tastes as if Emeril Lagasse himself made it -- flavors that meld and play off of each other when you take a bite.

I'm not a great chef -- not because I can't (I probably could if I only knew how!), but because I choose to spend my time in other ways (like writing this blog). But there are times when I want to simply feel like I am a maestro in the kitchen. It is a treat to eat yummy food, and perhaps just as satisfying to have made it yourself.

And it gives me a sense of pleasure to spend some cozy time in the kitchen to prepare that yummy food. This week I made Herb-Roasted Winter Veggies. I have experimented with using various types of veggies. In the dish pictured above, I used carrots, zucchini, yellow squash, onions, mushrooms, red garnet yams, and beets. It's what I happened to have in the house at the time. I've also made this recipe using only beets. Mmmmm...

So go ahead, have fun making this recipe and sharing it.

Not a Caregiver's Bone In My Body

How did this happen? Me, who has never enjoyed taking care of anyone or anything, how did I get here? How did I become a caregiver? How did my husband, the love of my lifetimes, get dementia? We kicked and screamed all the way! How did we get here?

I just want to have fun. I just want to live in my beautiful home with my beautiful husband and drive my beautiful car around the beautiful area we live in. I just want to cook beautiful meals and create beautiful art and play beautiful music. I just want to wear beautiful clothes and take beautiful vacations and hang out with our beautiful family and friends.

I just want to have tea with my husband in any coffee shop we choose. I just want to wander the bookstores with him, whenever we choose. I just want to enjoy his intelligent conversation and his company, his conscious presence. I just want to go out for a meal with him wherever and whenever we want. How did this happen? What were we thinking? How did we get here?

Open Letter to the Universe from a Caregiver

Dear Universe,

On behalf of the people throughout the world who live with dementia and the people who require help with daily living, as well as their caregivers and loved ones, this request comes from the heart of our hearts, from the center of the center of our beings.

We have been entrusted with the important and difficult task of taking care of a loved one. We work long, hard, intense hours, and we do it because our loved one needs us to, wants us to. We do it because in one way or another, you asked us to. This is by far the most difficult thing many of us have ever done, will ever do.

So please, help us. Help us to see clearly. Help us to remember that our intention in taking care of our loved ones is to make sure they are the ones who are comfortable, that they are the ones who need attention, that they are the ones who need understanding. And help us to remember that we are the ones who also need to be taken care of, that we are the ones who must be rejuvenated, that we are the ones who must love ourselves more than anyone else. And help us to remember that unconditional love goes a long way in caring for our loved ones, as well as ourselves.

Help us to remain the solid rock foundations that we are, to hold our ground and be ruthless when advocating for our loved ones, to be adept at navigating the steps that make up our days. Help us to see that the disease itself is what makes our loved ones sometimes act in ways they would never have done normally. Help us to be forgiving of our loved ones, to be forgiving of ourselves, and to be forgiving of others who do not understand our plight or the plight of our loved ones. Help us to breathe deeply and to know we are breathing in your love, the love that permeates the Universe.

And as we go about our day, please wipe away our tears and vanquish our frustrations. Remind us of the honor we have in caring for our loved ones. Help us to know, to know within each cell of our bodies, that whenever we respond to a request from our loved ones, each time we help them tie a shoe or button a shirt or pick up a fork, help us to see that we are actually serving you, the Universe, that our loved ones are the Universe, just like we are the Universe. We are serving the Universe.

Finally, help us know that we would do it all over again in a heartbeat, from the heart of our hearts, from the center of the center of our beings. We would do it again.

Feeling Dementia

I've often heard that when a family member has dementia, everyone in the family has dementia. Not quite true. Being Romeo's caregiver, I often find that if I think like I don't know how to function in the world (how to sit down in a chair, how to get in a car, how to walk down the stairs)...if in my mind I go through each step to complete a task and then verbalize each step to Romeo one by one, each small step of the way, then maybe he'll be able to do it.

Not always. I have been known to quickly grab a chair to put under him as he lowers himself into thin air. We have spent 20+ minutes at a time trying to get him into the car. Once, descending three stairs to leave a restaurant, we became so tangled up together, as if we were teenagers playing a game of Twister, that Romeo summoned the wait staff to help. Thank goodness his mind was present, as my brain was occupied going through the details of how to talk him down.

We don't know why Romeo has dementia. His doctors tell us that his dementia is not due to frontal lobe epilepsy, or Alzheimer's disease, or his ever having had a stroke. During the last three and a half years, we have witnessed a significant, progressive decline in Romeo's cognitive functions. Dementia involves not only memory, but thought processes, reasoning, attention, language, and problem solving capabilities, as well as balance and motor skills. These days, Romeo requires nearly constant help and a whole lot of supervision.

At this point, Romeo exhibits all the signs of moderate dementia and most of the signs of severe dementia. If you're interested in knowing more, check out the Epigee Dementia page.

I've often asked Romeo what dementia looks and feels like to him. He has difficulty describing it. I can't imagine it, as most people can't imagine it...not really. But I was determined to find out what dementia feels like. I wanted to find out what Romeo experiences, what he lives with every moment. My search for an answer came in the form of this short video:

Family Caregiving and the Virtual Dementia Tour

What do you think? Would you like to live with dementia, with such limiting and disturbing distortions? Are you willing to experience virtual dementia, just for a few minutes? The thought that Romeo (and thousands of others) sees the world like this through the lens of dementia -- stumbles through life like this -- every moment of every day -- well, it nearly made me physically ill. I could barely finish watching the video. How could I live if I had dementia? I don't know how people with dementia wake up every morning and face the daylight simply to do it all over again, to know that it will only go down from here.

Understanding what Romeo sees, what he hears, what he perceives in his dementia has changed how I feel about him. I love him still -- no more and no less than before. But now there's something else. Now there's something that wasn't there before. Or maybe it was there all the time and I just noticed it. Or maybe I noticed it but forgot. How to describe it?

It envelopes me and overwhelms me, inspires and enlightens me. It permeates every cell in my body and carries me to the edge of knowing. I am in admiration, marvel, reverence. This man, Romeo, wanders through dementia with strength and bravery. He meets everything in life head on-- even his dementia. This Romeo is the radiance of the sun itself, the radiance of the lamp and the beacon. Illuminating himself, he soaks up the light and energy and reflects it back to everyone -- living or not. No exceptions. He is divinity itself, pure and graceful. I am in awe and wonder. How does one begin to thank the Universe, the Metaverse, for as rare a gift as that?

The Wrong Caregiver

One day not long ago, after an especially frustrating day taking care of Romeo, I told him that he chose the wrong person to be his caregiver. "I'm terrible at it," I admitted in defeat.

"You're a great caregiver!"

"No, I'm not."

"Look," he said, "if the situation were reversed -- if you, my beloved Juliet, were the one with dementia and I, Romeo, were your caregiver . . . well, quite frankly, you'd be dead by now."

He was serious. He was also correct. What a pair we are.

Away From Home With Dementia

We're all just walking each other home.

-- Ram Dass

Romeo wants to go out for tea, out for dinner, out to a movie, out for a walk, out for a drive, just out. Out, out, out. But most of all, Romeo wants to come home. And he wants to come home...NOW.

Who can blame him? He's in a strange place, with strange people, strange food, a strange bed. He's in a nursing home that's only a four-minute drive from home, and yet he's thousands of miles from the stone and stucco and shingle building with the archway entry, the place we call home.

Two nights ago, Romeo cried as I prepared to leave him for the night. He wants to come home with me. It tore my heart out. I want him to come home with me, too. But not like this. Not when it takes two people to move him from wheelchair to bed and back, to run him through physical therapy, to help him take a shower, to help him do anything. His medical needs complicate the situation further. Quite simply, it takes a team to take care of him.

I got on my knees at the side of his wheelchair, our eyes at the same level. I held his hands and kissed them as his tears fell on my hands. In the most steady and soothing voice I could summon, I was able to say, "Romeo, more than anything I want you to come home with me." I could have cried for days just then, but somehow an inner strength urged me on. "You must stay here, my Love, until you get stronger. I love you so much that I want you to stay here and keep working with the physical therapists every day, every day, until you get stronger, until it's safe for you to be home." He stopped crying as he considered this.

"Romeo, you know how strong our love is, how tightly we're bonded. You know that most of your spirit is at home with me every night anyway. I feel you there. And do you know that most of my spirit is here with you even when I'm not physically here?" Yes, yes, he agreed. He felt it. We both became silent, content, peaceful. We kissed and held each other and parted for the night.

No, we don't know when Romeo will be able to come home. And today, feeding the not knowing, stoking the doubt, we nearly finished filling out the 26-page application to Medicaid for Romeo's long-term care, should we get to that point.

Will Romeo be able to come home, ever? We simply don't know. But we both know, without a doubt in our minds, that we are quite literally with each other constantly, wherever either of us happens to be. It has always been like this, and it will always be like this. One day we'll know whether Romeo can come home, but perhaps it isn't so important to know. Perhaps it's more important to know that our home, our sanctuary, is within us and there really is no such thing as being away from home, wherever we are.