Sixth Day of a Caregiver's Cold

Another day away from Romeo because of my cold symptoms. It's been a week since I've seen him. This is getting old.

He called me this afternoon. "What are you doing?"

Me, with a scratchy voice: "I'm about ready to get some lunch."

"Oh, good."

"What are you doing?"

"Are you coming to see me soon?"

"I still have cold symptoms."

"Oh, are you drinking lots of orange juice?"

"All I have in the house right now is grape juice and apple juice."

"Get some orange juice. It's much better for you."

"Okay."

"Juliet, this will sound silly."

"Probably not to me. What is it?"

"Well, I know it's been a long time since you've been to visit. And I know it's because of your cold."

"Yes."

"But, I know this is silly, but I can't help but feeling that one day you'll abandon me." I could hear the tears in his voice, which made me tear up.

"Oh, Romeo, you're right. It's silly."

"I know." More crying from both of us. Gosh, we're wimps.

"You know, Romeo, that I will always do the best I can to see that you get everything you need."

"Yes, I know."

"And if you ever get to the point when you don't know who I am, you gotta know that I'll still come to visit you."

"Yes, I know."

More tears, more crying.

So that solves it. No matter what, no matter whether I am coughing, sneezing, sniffling, or not, I'm going to go see Romeo tomorrow.

Fifth Day of a Caregiver's Cold

Feeling much better today, but still low energy, and still coughing and sniffling and staying away from visiting Romeo at the nursing home. I'm still contagious and don't want to infect any of the residents there.

When I spoke with Romeo on the phone this morning, he told me about an incident this morning that worried him. It worried me as well. Still, he relayed the story with his usual god-like calmness and presence.

At the breakfast table, Romeo could not see his food on the table. He couldn't see anything on the table. His eyesight is fine, but dementia sometimes hijacks the messages that travel to his brain so that he never gets them. In this case, his eyes probably saw what was in front of him, but his neurological system didn't translate it for him, so he saw nothing. This often happens with dementia. Shoot.

Fourth Day of a Caregiver's Cold

Today was my crash and burn day, surrendering to the cold virus that's been visiting the past few days. My voice was nearly gone this morning, and by 10:00 a.m., it was gone.

I did absolutely nothing all day but lie on the couch with my blankie pulled over me, dozing, sipping water. I watched a movie, HGTV (my default channel), and the Food Network.

Oh, well, wait. Yes, I talked with Romeo today too, of course. He was so sweet and loving and full of advice on what I should do to take care of myself.

Romeo advised me, "Take lots of vitamin C, drink lots of fruit juice, and have some brandy. Brandy is very good for colds."

"I don't have any brandy in the house."

"Go out and get some."

"I don't want to leave the house."

"Call the store and have them deliver it."

"I don't know of any liquor store that delivers."

So I cuddled up under the covers without the brandy.

Later, I felt up to watching a movie. The sillier, the better. I love silly movies when I'm sick. They make me laugh, and laughter is good medicine -- maybe about as good as brandy.

Typically I put in a Marx Brothers movie when I'm sick, but I just watched the only one I own (A Night At the Opera) a day or two or three ago and didn't want to watch it again. And I didn't want to drive to the library to get a different one. So I decided on a movie in my private collection, pulled it off the shelf, and popped it in. Three Amigos, with Steve Martin, Chevy Chase, and Martin Short. It did the job: made me laugh.

I'm not sure what it is about singing and talking animals that cracks me up so much. Whatever it is that makes you laugh, I highly recommend you do it or read it or watch it when you're not feeling well or when you're feeling down. Laughter is a great substitute when there's no brandy.

Third Day of a Caregiver's Cold

I feel fuzzy, drained, dopey. Regardless, I go to my acupuncture appointment. Afterward, I intend to go home, have lunch, and sleep. And that's what I do.

Romeo and I have missed each other's phone calls today, so no phone conversation with him until tomorrow. I don't visit today, as I'm probably still contagious and don't want to expose anyone at the nursing home to my cold germs.

But silly, crazy me...later, I go out with friends for dinner and some great music, come home, and stay up way too late, as has become my custom. Staying up late. Why? Because I can? Because I'm not working now and can do that? Because I'm naturally a night person? Because I usually need only six hours of sleep each night? Because I'm sick? Dunno. I'm too fuzzy, drained, and dopey to know or care.

A Caregiver Resting

Okay. I admit it. Completely. Here's the news: I'm not good at taking care of myself. There it is. It's out for the world to know. A caregiver who isn't good at taking care of herself. It's true, and not that unusual.

I've had a cold for two days, and today I had planned to stay in all day to rest. Lying around the house, reading, watching TV, drinking lots of fluids, giving my body the rest it needs to fight the virus.

So here's what I did all day. Here are some of the things I did to "rest":

• Did two loads of laundry, including all the sheets and linens on the bed.
• Made some Creamy Dairyless Rice Pudding (photo above, recipe below).
• Played my djembe drum.
• Filed lots and lots of papers.
• Caught up with emails.
• Unclogged a slow drain.
• Talked with Romeo on the phone.
• Did some writing.
• Went to drum class after dinner.
• Ate some of that Creamy Dairyless Rice Pudding (yummy!).
  

My bad. But I'm feeling a little better (obviously). Tomorrow is another day, and I'm sure I won't rest then either, no matter how harshly I scold myself.

From Moosewood Restaurant Low-Fat Favorites: Flavorful Recipes For Healthful Meals:

Creamy Dairyless Rice Pudding

4 cups water
3/4 cup white rice (preferably basmati)
1 quart plain soy milk
1/2 cup pure maple syrup
1 teaspoon ground cinnamon
1 teaspoon pure vanilla extract
1/4 cup raisins
1 teaspoon freshly grated lemon peel

Bring the water to a boil in a heavy saucepan. Add the rice and simmer, uncovered, for 5 minutes. Remove from the heat and allow to sit for 5 minutes. Drain the rice and return it to the pan with the soy milk, maple syrup, cinnamon, vanilla, raisins, and lemon peel. Bring to a boil, then reduce the heat and simmer gently for 30-40 minutes, stirring often, until the pudding is thick and creamy. Best if chilled at least 6 hours or overnight.

Enjoy! And remember that each and every one of us needs to take care of ourselves, not just us caregivers. Yep, I'm listening to that advice too. Maybe I'll even take myself up on it the next time I get sick.

A Caregiver's Cold

This morning I woke up with a cold. There were no warning signs, no symptoms that came on slowly. I simply woke up with a cold. Weird.

I called Romeo to talk with him, to tell him that I wouldn't be coming to see him until the cold is gone. I don't want to pass along the germs to him or anyone else at the nursing home.

Romeo understood, of course. But his next words melted me completely: "Oh, my Beloved, I want to come home and hold you and take care of you." Oh, yes, I would like that more than anything right now. Me, who doesn't like to be held or touched when I'm sick, would love it more than anything if Romeo were here to take care of me.

When I'm sick, I prefer to curl up in a ball under the covers all alone. Let me be. But for Romeo, I would let him hold me. For Romeo, I would let him fuss over me, tuck me in, kiss me on the forehead, bring me cough medicine and hot tea, read out loud to me, do reiki on me, bring me vitamins and tinctures, and sing lullabies to me. For Romeo, I would let him hold my hand, massage my aching muscles, and tell me fairy tales. For Romeo, I would fall asleep in his arms.

But Romeo can't be here. So I will do what I've always done when I'm sick. I lie on the couch with tissues and hot tea within reach, a favorite blankie tucked all around me, and pop in a movie. This time, though, I fall asleep and dream of Romeo as the Marx Brothers play in the background.

Nothing In Dementiaville

Romeo, sitting in his wheelchair in a deserted conference room we claimed for ourselves, raised his head, looked out the window, thinking he was looking at me, and said, "I'm not here very much."

"Not here, in this room very much?"

"No. I mean that my mind isn't here very much. It's somewhere else."

"Oh. Yes, I know that."

"You do?"

"Do you know where your mind is?"

"No."

"Okay. When your mind isn't here, what's it like?"

He continued to gaze out the window, and as his facial expressions changed, I realized he still believed he was looking at me, engaging me. I do not correct him. To keep his thoughts on topic, I don't ask him to turn his head the other way so he's actually looking at me. He thinks he is, so I let him be and gently continue.

"Romeo, do you see anything when your mind isn't here?"

"No, nothing."

"When your mind isn't here, are you aware of your body?"

"Yes."

"Do you feel sensations in your body?"

"No. It's just there."

"And what do you see?"

"Nothing."

"And when your mind isn't here, what emotions do you experience?"

"None."

"Nothing at all?"

"No."

"Do you suffer, are you in pain?"

"No."

"Are you happy?"

"No. I'm nothing. I just am."

"Is it a pleasant place to be, just being?"

"It just is."

And that was all Romeo had to say about what it's like for him in Dementiaville. On my end, I am relieved to know that he isn't suffering. And I know now that I can relax and there is no need to worry when his mind isn't here. He's okay and everything is as it should be.

Love and Poetry in Dementiaville

At the touch of love,
everyone becomes a poet.

-- Plato

Three days after we met, Romeo began to write love letters and poetry to me, and I wrote back. Here's a sampling:

Dearest Juliet,

Since knowing you,
My heart has opened yet further
To embrace all womankind.

Love,
Romeo

* * * * * * * * * * * * * * * * * * * * *

Dearest Juliet,

Not only have you taken up residence in my heart, but now in my mind, too! Am I therefore "possessed?" If so, I love it!!!

Love,
Romeo

* * * * * * * * * * * * * * * * * * * * *

My Dear Romeo,

A poem I wrote for you:

Request Granted

You, my gentle jewel, sweetly ask for my kiss.
I am touched, for few have requested.
Instead, they have tempted and enchanted
Then invoked empty possibilities
And compromised my breath.

I am curious -- do you know what you ask?

Our kiss would be a primordial gesture,
An exchange of life force,
A blending of our spirits.
We would know each other's beginnings
And give birth to each other throughout time.

You know, don't you?

With all my heart,
Juliet

* * * * * * * * * * * * * * * * * * * * *

Dear Beloved Juliet,

A beautiful poem; tender, exquisite -- and oh! so true! Yes, we are cut from the same piece of cloth, you and I. The Tailor repeated His/Her work so that a new, unimaginable synchronicity could be born -- souls melding even before they returned to the Ultimate Unity.

Love you completely,
Romeo

* * * * * * * * * * * * * * * * * * * * *

Dearest Juliet,

I don't know why I missed you so today.
Last night we went so deeply,
Exquisitely. Blissfully.
And maybe that stirred the old stagnant waters of sadness, aloneness and unhappiness
That I experienced in my puberty.
All I know is that I miss you.
That is the stark, naked truth of me.
And I love you.

Romeo

A Caregiver's Joy and Lament

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way - in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only.

-- Charles Dickens, in A Tale of Two Cities

It's over. It's been over. Romeo's dementia continues to take him away. Whatever he and I came together to do is ending. We've finished it. I continue to care for him, to look after him, to be there for him, to love him. But it's over.

My sorrow lives on, and it will for a time, but my life with Romeo is over. It's over before it had a chance to begin, to really begin.

My joy -- ah, this joy. So unlike my sorrow, this joy lives on. This joy continues to live. But the joy is not over. My joy is alive and will continue to live for as long as I do, and could very well live beyond my time. The joy of having had Romeo in my life, present in my life, the joy of loving him, the joy of having been loved by him, of being loved by him, in a way no one else has ever loved me -- that joy will always be with me. It will last a lifetime, and it will always be at the root, the base, of who I am, of what I'm about. It will continue to encourage me and remind me that once upon a time, not so very long ago, there was sorrow, yes...but it is joy that survives.

Juliet's Personality and Soul Card

In my previous post, I talked about Romeo's Personality and Soul Card. Now it's time to talk about me and my Personality and Soul cards.

I made calculations to determine which of the Major Arcana tarot cards represent both my Personality and Soul cards and Romeo's (see instructions below for how to determine your Personality and Soul cards). You can think of the Personality and Soul cards as being similar to astrological signs. They are your personal lifetime cards. They help give insight into your life, to your personal journey.

The Personality card symbolizes what you've come into this particular lifetime to experience, learn, study. The Soul card indicates your soul's purpose throughout all of your lifetimes. As it happens, my Personality card and Soul card is the same card, and so is Romeo's, albeit we each have different cards. Because our Personality cards and Soul cards are the same, it means that we're both working specifically on our soul's purpose. It means that we are more focused, more direct. The word intense comes to mind.

My Personality and Soul card is The Hermit. Romeo's is The Chariot. Here's my take on what The Hermit symbolizes in my life.

The Hermit is about the inner life and spiritual quests, about the higher self, the inner voice and about following its guidance. The Hermit speaks directly to my life as caregiver to Romeo, as it implies that the forced limitation and circumstance of his dementia cannot be changed. Even time cannot change the fact that Romeo has dementia. Time will only make it worse, more pronounced. It will take Romeo over completely.

By accepting Romeo's dementia as well as my role as his caregiver, I've come to realize that it's best not to struggle against the the situation. And through this realization has come a sort of calm acceptance, a graceful humility that has helped me navigate the ups and downs of my caregiving life that could very well have been unmanageable without The Hermit's steady, wise influence. Not to say that there aren't challenging times -- there are plenty. However, The Hermit's presence is a reminder that I can choose to trust the bumps and falls that are part of being a caregiver, that come with loving someone with dementia. I can only watch in silence as our lives unfold, as Romeo's dementia progresses. I can only listen as my inner voice guides me to say, to do whatever is best for Romeo, for me.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

To determine your Personality and Soul cards, follow this process (from Tarot for Yourself: a Workbook for Personal Transformation, by Mary K. Greer):

Add together your month, day, and year of birth.

Example:

October 14, 1947

10 + 14 + 1947 = 1971

Then add each digit. 1 + 9 + 7 + 1 = 18.

If the resulting number is 1-22 (as it is in this example), this is your Personality Number. Then match up the number with the corresponding Major Arcana card. In this example, it's the 18th Major Arcana card, The Moon. To determine the Soul Number, add 1 + 8 = 9. The corresponding Major Arcana card is #9, The Hermit.

When the birthdate number adds up to be more than 22, reduce the number down to 22 or less. This is the case for both Romeo's birthdate and mine.

Romeo's birthdate:

November 23, 1944

11 + 23 + 1944 = 1978

1 + 9 + 7 + 8 = 25

2 + 5 = 7

Corresponds to Major Arcana card #7, The Chariot

Juliet's birthdate:

September 28, 1952

9 + 28 + 1952 = 1989

1 + 9 + 8 + 9 = 27

2 + 7 = 9

Corresponds to Major Arcana card #9, The Hermit

When the birthdate is reduced to a 1-22 number, the corresponding Major Arcana card is both that person's Personality and Soul cards. This means that in this lifetime, you're working specifically on your soul purpose, which makes you more focused and directed.

Romeo's Personality and Soul Card

I must admit that I have a difficult time reading Romeo's tarot cards. I suspect it's because of his dementia. The information that's transmitted to me is scrambled, garbled, out of focus, and I haven't been able to relate it to his life...because his life isn't a typical life. It's a life with dementia.

I am by no means an expert at tarot. I dabble in it. Or should I say that I dabble at dabbling in it. So I'm lost and don't know what to make of Romeo's cards. Nevertheless, I'll take a stab at it. Who knows? Something useful or insightful may come out of my ramblings.

I made calculations to determine which of the Major Arcana tarot cards represent both Romeo's and my Personality and Soul cards (see instructions below for how to determine your Personality and Soul cards). You can think of the Personality and Soul cards as being similar to astrological signs. They are your personal lifetime cards. They help give insight into your life, to your personal journey.

The Personality card symbolizes what you've come into this particular lifetime to experience, learn, study. The Soul card indicates your soul's purpose throughout all of your lifetimes. As it happens, Romeo's Personality card and his Soul card is the same card, and so is mine, albeit we each have different cards. Because our Personality cards and Soul cards are the same, it means that we're both working specifically on our soul's purpose. It means that we are more focused, more direct. The word intense comes to mind.

Romeo's Personality and Soul card is The Chariot. Mine is The Hermit. Here's my take on Romeo's Chariot as it relates to his life (for an interpretation of my Personality and Soul card, see the next post).

Typically, The Chariot is about harnessing and directing all of your forces toward your goal, about taming your fears and staying in tune with your inner wisdom so you can fight for what's important to you, to meet your challenges and be able to succeed.

As Romeo's Personality card, as his Soul card, does this accurately represent what his life has been about? I do not know. He's had dementia during most of our time together, and I don't know if his recall of his life is accurate. I know he was and still is a spiritual seeker, that it has been his driving force for many years, that he traveled to India from his home in Britain and then eventually to Oregon to be with his spiritual teacher.

Throughout Romeo's life, he wasn't interested in raising a family, he wasn't interested in developing his career as a computer programmer, and he wasn't interested in accumulating material things. His life was about spirituality. His goal was spiritual development, his goal was enlightenment. Period. He was focused, it was easy for him to stay on target, and he struck down obstacles with such ease that they hardly seemed like challenges.

In this sense, The Chariot proves him right as a Personality and Soul card -- he most definitely has been successful at directing all of his energy toward his goal, toward spiritual development, and he's been so successful that a number of people believe him to be enlightened. I know better -- I've lived with him -- wink, wink, grin, grin. But he is the most spiritually developed person I know. Romeo is my hero, my rock, my lighthouse.

Now, with dementia, Romeo's light is fading, and he no longer thinks of spiritual development. He doesn't quite follow the logic in our spiritual discussions, although he comes up with some insights that wow me.

Is the tarot game over? Does Romeo have any life purpose and soul purpose left? He claims he has no goals. I think he does. He may not be conscious of them, but he is definitely living a purpose, contributing something in his every day life, at least on his "good" days. He is a channel for Love. It seeps out of him as he greets people, as he speaks with them, interacts with them, and even as he simply sits silently. He is Love. Simple, pure. He melts hearts and raises the level of love present in the room. What an honor it is for anyone to be in the presence of this man -- whether they know it or not.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

To determine your Personality and Soul cards, follow this process (from Tarot for Yourself: a Workbook for Personal Transformation, by Mary K. Greer):

Add together your month, day, and year of birth.

Example:

October 14, 1947

10 + 14 + 1947 = 1971

Then add each digit. 1 + 9 + 7 + 1 = 18.

If the resulting number is 1-22 (as it is in this example), this is your Personality Number. Then match up the number with the corresponding Major Arcana card. In this example, it's the 18th Major Arcana card, The Moon. To determine the Soul Number, add 1 + 8 = 9. The corresponding Major Arcana card is #9, The Hermit.

When the birthdate number adds up to be more than 22, reduce the number down to 22 or less. This is the case for both Romeo's birthdate and mine.

Romeo's birthdate:

November 23, 1944

11 + 23 + 1944 = 1978

1 + 9 + 7 + 8 = 25

2 + 5 = 7

Corresponds to Major Arcana card #7, The Chariot

Juliet's birthdate:

September 28, 1952

9 + 28 + 1952 = 1989

1 + 9 + 8 + 9 = 27

2 + 7 = 9

Corresponds to Major Arcana card #9, The Hermit

When the birthdate is reduced to a 1-22 number, the corresponding Major Arcana card is both that person's Personality and Soul cards. This means that in this lifetime, you're working specifically on your soul purpose, which makes you more focused and directed.

A Frozen Caregiver, or a Deer Caught

Nobody was really
surprised when it happened,
not really, not on the subconscious
level where savage things grow.

-- Stephen King

I am a deer, caught in headlights. For the past few days, I have wandered around the house, around town, startled, frozen, blocked, unable to do much of anything.

What's going on? What to do? All I know is that I don't care. I simply want to be caught in the headlights. I want the light to shower me, to drench me, to cleanse and heal me. I'll sit here in the dark and let everything that's happened with Romeo these past five years hit me again. Without consciously knowing what I'm doing, I'll take everything, gnaw on it, love it, and let the light shine on it.

My eyes blink, but I can't move. I don't move my eyelids. Someone, something else moves them. My mind talks to me, but it's not me talking. It says, "Stay. Stay frozen. Let things wash over you. You don't need to do anything. Just stay frozen." Easy to do, since I'm caught in the headlights and can't move.

I ask my mind, "How long will this last? How long will I be frozen?"

"It doesn't matter."

And I suppose it doesn't. I am too frozen to care. The headlights shine on me. I remain still. But I know now that I am startled. I am surprised to be in this situation. To have been thrown into the role of caregiver to a new husband, before the honeymoon was over. If the headlights had spotlighted me during that first year we were together, would I have stayed with it all this time? I don't know. Too much to think about right now. I just want to be with it here, immobilized.

The Purpose of a Caregiver's Grief Process

I recently had breakfast with a friend who just returned from a long stay in India to participate in a deepening spiritual process. Over eggs and toast, pancakes and pure maple syrup, we sat for three and a half hours (!) talking about what had been going on in each other's lives while he was away. And over this simple and common breakfast, he reminded me of something not so simple and not so common. Something so obvious that I never noticed it, never thought of it, never acknowledged it until he said the words.

I told him about my grief at losing Romeo to dementia, how I hadn't been able to keep the stress level low no matter what I did, how an overwhelming sadness hung over me. I told him how the activities I did previously to keep stress on a leash no loner helped. Meditation didn't seem to help, drumming didn't seem to help, exercise didn't seem to help, qi gong didn't seem to help. Reading, listening to music, having fun, none of the usual stuff was working. I am stressed out, sad, anxious, tearful.

He wants to know more about my stress level. I explain that if my stress level, for example, were 8 on a scale of 1-10, then previously I was able to take it down to perhaps 3 or 4 or 5 by doing any one of my usual activities, my "usual stuff." Now, however, no matter what I do, that stress level stays at 8. And it's weighing on me emotionally, mentally, spiritually, physically.

His reply, so elegant, so insightful, so freeing, was simply, "What? You expect to feel good during a grief process?"

Aha. Of course. What was I thinking? The purpose of the grieving process, for goodness sake, is to grieve. Sheesh. I'm a little slow sometimes, especially when I'm in the thick of something, when my mind is occupied with something major like grieving for Romeo. Expecting to feel good during a grief process? Well, yes, I guess I had that expectation. Silly me.

The only question that remains now is how to make friends with that grief, how to greet it, let it come out, and express itself, and how to be joyful when it shows up. Grief is part of life, after all, and life is exquisite, grief and all. How, then, to welcome it? The answer, I think, is to honor it simply by letting it be. By recognizing it and inviting it to stay for as long as it wants. By giving it the space it needs to express itself. By letting it take over an entire day if that's what it wants. By crying for hours and being fine with that. By laughing when it's over, at least for the moment. And by knowing, really knowing, that this circumstance that Romeo and I find ourselves in -- is really okay just as it is. There is truly nothing we can do about it but ride it through, in both sadness and joy.

Acupuncture for a Caregiver's Grief

Wowsers. As I mentioned previously (A Caregiver's Grief Process Stepping Up), I've started having acupuncture treatments to help me release the grief of losing Romeo to dementia. Wowsers. So far, so very good.

This is not the traditional Chinese acupuncture. It's Classical Five-Element Acupuncture. In my experience, one of the basic differences between the two is that in traditional Chinese acupuncture, the needles are left in for approximately 30 minutes or so, while in Classical Five-Element Acupuncture, the practitioner inserts the needles only very briefly, then removes them almost immediately. It seems as if the acupuncturist is inserting a needle into whatever energy blockages are in the body, puncturing them, and dispersing them, breaking them up. This is a good thing.

After my first treatment, I began crying before I left the acupuncture office. I cried on the 30-minute drive home, and I cried the rest of that day. These weren't wimpy tears rolling down my cheeks. These were huge drops of salty tears, coming from an unknown place deep within me. My cries were long, loud, and emotionally draining. My crying was not associated with anything specific about losing Romeo. These tears simply surrounded the situation itself. The tears were...well, who knows what they were? They simply were. And on this day, I let them come until they were gone. For now.

Yep, I've been crying frequently throughout this experience of Romeo's dementia. There are still more to come. Lots more. But at least now, with the help of acupuncture, they're no longer blocked. They're releasing.

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?

A Caregiver's Grief Process Stepping Up

It's been building quietly for some time now. I release it periodically, when I feel it. But lately there has been a hugeness knocking at the door from the inside, a presence of stress, grief, sadness wanting to be let out. It's making a lot of noise. It's clawing at the inner door of my spirit like a female cat in heat, howling and screaming. And it's winning. It's coming out. My grief process is stepping up.

With losing Romeo to dementia, with losing his physical presence in our home, comes grief. I've been grieving since he was first diagnosed with dementia four years ago, and this grief process of mine comes in waves.

However, for the past month or so there's been more stress, grief, and sadness than I seem to be able to release. Or at least it appears that my frequent releases aren't able to keep up with the grief that keeps coming and coming. I certainly don't want to hold onto it, but it seems stuck, blocked.

So I followed the suggestion of a friend and am having acupuncture to help me through this process. After my first treatment, I started crying before I left the clinic. And I cried on the drive home (yep, I probably should not have driven, but I felt like I could cry all day). And I cried when the nice, handsome policeman pulled me over for speeding (I never speed -- it's been 27 years since I've received any sort of traffic violation!). And I cried when I realized that I must be getting really OLD since I couldn't talk my way out of the ticket. And when I got home, I cried all afternoon without stopping and went to bed crying. Gosh, it felt good.

Acupuncture is my new hero. I'll be going every week for a while. I've never cried so much in my life, and there's still more to come. There are still more energy blockages to burst, and there is still more stress and sadness to release. Gosh, it feels good.

Letting It Go and Letting It Be In Dementiaville

When Romeo lived at home with me, I helped him with whatever he needed help with, whether he asked for it or not. I anticipated what he might need help with and did it before he knew he needed it.

And yes, perhaps I even indulged Romeo. I gave him everything I could, and then some. I was his set of eyes, his ears, his memory, his arms, his legs, and his sense of touch, taste, and smell, his everything. I was an extension of him. And why not? I loved him like I've never loved another, and this was a way to show it.

What I didn't think of then is how I was absolutely spoiling Romeo rotten. Of course, to me it didn't feel like I was spoiling him. I simply put myself in his place and asked what I would have liked from my caregiver, and the answer that came up is what I did for Romeo.

Now that Romeo lives in a nursing home, there is no one-on-one care. This is a shock. To him, and to me as well. Romeo's every wish is not my command, and I can't make it anyone else's command. In Romeo's life at the nursing home, all of his needs are met, as they were met at home with me. But not nearly as quickly, not as immediately, not as urgently. And he feels it, as do I. He feels the frustration, the lack of control, the sadness of me not being there to give him what he wants.

Romeo has not done well in letting go of that, letting go of the one-on-one care he received when he lived at home with me. He hasn't let go of wanting what he wants, when he wants it. I too had a difficult time in letting go of the fact that Romeo's can't have his every desire when he wants it.

But it's a little easier for me to let go, to realize that he is frustrated, to let it be. I can't change it now, and I would not have changed it then. Loving Romeo, giving him his heart's desire, was my joy. It was my conscious choice. And now, we both have to let it go, simply let it be. And that, too, is a conscious choice.

Drumming In Dementiaville, Part Deux

It is often said that the first sound we hear in the womb is our mother's heartbeat. Actually, the first sound to vibrate our newly developed hearing apparatus is the pulse of our mother's blood through her veins and arteries. We vibrate to that primordial rhythm even before we have ears to hear.

-- Layne Redmond,

in When the Drummers Were Women:

a Spiritual History of Drumming

And so Romeo took an unexpected, forced hiatus from drumming after he fell at home and after his hospital stay and after the transfer to the nursing home. (See The Fall and What Happened After, or Dementia Unleashed and A Caregiver Alone At Home.)

That hiatus, however, was brief. In the morning of Romeo's fourth day at the nursing home, I wheeled him into the second floor lounge for a -- you guessed it -- for a drum circle. Among the scheduled activities for residents that day, in addition to bingo and a review of news headlines and an ice cream social, was a drum circle. And Romeo wanted to be there. He wanted to beat on a drum. He wanted to feel the beat of drums.

It would be an understatement to say that this drum circle, which is held twice a month, is a popular event. Every session Romeo and I have gone to (which is all of them so far) has been packed. On this particular day, like all the others, residents filled the lounge and spilled out into the hallway. There were drums and sticks and shakers enough to go around, and no one was afraid to use them, and use them well. Passersby paused, watched through the hall windows, and either lingered for a time or continued moving down the hall as the beat punctuated their every step and swing of their arms and hips.

And the residents themselves...well, it was no secret that they love it. Rhythm. My goodness, it's huge. Think about it. It's the cyclical pattern of creation, increase, power, dissolution, death, incubation, and creation again. Rhythm is the passage of time -- not clock time but rhythmic cycle time. Each person who ever lived on the earth felt rhythm every moment of their lives, as we do, in the pulse of our own heartbeats, in our blood, and in our own breath. The beat of the drums, rhythm, hits you in the guts. The beat of the drums, rhythm, is the deep, unconscious echo of the universe, of existence. The beat of the drums is what we are, who we are.

For many of the residents of nursing homes, in the last stages of their lives, their existence, whether they are conscious of it or not, is about reframing all they've learned. It's a time of re-youthanization, of finding big meaning in the small, about understanding each thread in their personal life weaving. It's about saying less and spending more time simply being. It's a time for breathing. And it's about timelessness. Rhythm was always there. Rhythm will remain after we're gone.

The beat of the drums -- do you sense it? Very faint and far away? The beat -- do you feel it? The rhythm -- can you feel it pulsing through every cell in your body? Can you? Can you feel it? The rhythm. Isn't it a cosmic miracle?

Drumming in Dementiaville, Part One

Through an enormous expenditure of effort and resources, modern science is coming to the same conclusions the ancients knew from immediate experience: that life is inexorably rhythmic.

-- Layne Redmond,

in When the Drummers Were Women:
a Spiritual History of Rhythm

I read Layne Redmond's book more than 12 years ago, having been attracted to drumming eons before then. Even so, I didn't get around to taking up the djembe drum until the first of this year. Well, okay, I had one class last December -- but no drum to practice on, so that hardly counts.

The djembe drum has since inserted itself firmly into my days. Its roots are anchored in the bedrock of my soul, and it appears that I'll be a drumming diva for life.

Romeo followed in my djembe shoes...sort of. He was a reluctant drummer and wasn't impressed when I recited some of the health benefits of drumming. He didn't seem to care that a few minutes of drumming could reduce stress (well, okay, he didn't have any -- other than listening to me drum), boost his immune system, stimulate his circulation, or give a great massage to the left and right sides of his brain. I thought the idea of a brain workout would have enticed him, the possibility of coaxing his dementia to the background. But no luck.

Finally, reserving the best for last, I told him about the drum meditations we did in class. He's been a meditator since early adulthood and perked up at the mention of the word "mediation." I ran with it, knowing that his attention would be with me as long as I kept talking about drumming as it related to meditation.

"Romeo, at the end of every class we play the same rhythm over and over again, for 10 minutes or so."

"What for?"

"Well, first, it's fun. Second, you know that alpha brain waves are produced when people meditate..."

"Yes."

"That happens during drumming, too."

He picked up my drum and said, "Show me what to do."

The rest, as they say, is history. Actually, not quite. From the beginning, Romeo insisted on learning to play the djembe properly (did I mention it's a hand drum?). But he had trouble remembering how and where to hit the djembe, how to hold his hands and fingers, how to make the sounds for the bass, tone, and slap notes on the drum. I realized it didn't matter. He just needed to hit the thing. The sound that came from it didn't matter -- he just needed to hit the thing. To receive the health benefits from the drum, to meditate with the drum, he just needed to hit the thing.

After a time, Romeo was able to let go of his need to "get it right," and so he played the drum nearly every day for about 10-15 minutes. On several occasions, he played it for 40 minutes. He used random hand patterns (if you could call them that), hitting the drum first with his right hand and then switching to his left when he got tired, then back to his right again. Sometimes when he complained of his arm being tired, he didn't think to switch hands, so I suggested he use his other hand for a while. With a "eureka" look on his face (courtesy of dementia), he would change hands and keep on keeping a beat of sorts and acknowledged that drumming was good indeed.

Once Romeo was no longer able to live at home, after his fall and hospital stay, after he was discharged to the nursing home, his djembe days ended. But his drumming days weren't over.

To be continued in my next post...

Driving Away From Dementiaville

I feel like I am diagonally parked
in a parallel universe.

-- Author Unknown

Nearly every time Romeo and I would get in the car, me behind the wheel, to head home from somewhere, I'd ask, "Home, James?"

To which he would reply, "Yes, and don't spare the horses."

Recently, I found myself driving north on the Interstate, minding my own business and listening to a Beatles CD (Help!), when I was overtaken by the strong desire to continue driving north, perhaps to Cheyenne (why there, I have no idea), with no intention whatsoever of sparing the horses.

I simply wanted to keep on going, to drive away. It's not that I had any destination in mind. Was I driving away from something? To somewhere, to something? Was I simply driving for the fun of it?

We've all been in the situation where we were driving somewhere and arrived at our destination without actually remember driving there. Our automatic pilot drove while we were -- where? Asleep behind the wheel? Annotating our lives? Alert in some other state of consciousness? Well, this wasn't like that. I simply wanted to drive. Maybe it was because it was quiet, peaceful, scenery passing before me, the white lines of the interstate beckoning to adventure, to places and people unknown.

The dashboard, my ever-present guide, enticed me. The speedometer showed 82 mph (completely legal on a stretch where the speed limit is 75, right?) and pulled me forward. The tachometer held steady at 2,5000 rpm and encouraged me to continue. The temperature gauge hung just above the middle of C and H and confided its readiness for a long drive. The fuel level indicated nearly full, and I thought seriously of taking a long, long drive.

All systems were go. My chariot with its 3,500 horsepower (I think that's what it is -- at least, that's what it says under the hood: V6 3,500) was ready to take me in any direction I pointed it. No need to spare the horses today, now. The idea of continuing my drive north seemed delicious, sexy, perhaps even decadent. For hours I could remain in my chariot, this moving sanctuary, my mind free to wander to its content while another part of me took in the expanse of the blue and golden autumn sky peeking above the blanket of gray clouds threatening to unleash a sprinkle or two, the mountains to my left, the hills beneath me, and the plains to my right.

An empty mind. When I drive alone like this, my mind holds nothing. I am mobile and hollow. I am driving and driven by nothing. Yes, this is exactly what I need. To drive is to be here, in the present, and not in Dementiaville, with nothing else to occupy me. My chariot knows where it's going. I can simply be, I can sit back, with eyes alert to the road and hands guiding the wheels, and be taken by 3,500 horses (or however many there are pulling my chariot) to wherever my spirit guides me. To rest in the clouds, to be held and embraced and kissed by their soft mistiness.

This would be a welcome respite from my life with Romeo and dementia. But it will not happen this day. There are appointments to keep, things to do, people to see. Life has a way of inserting itself into our dreams. And so later, perhaps tomorrow or the next day, I'll look at a map or check out the internet for places I might drive to, drive long to. I'll drive to soothe and heal my spirit, to pay homage to my aching soul, to honor this process of losing Romeo, to honor him. And, as Romeo has frequently suggested, I will not spare the horses.

The Caregiver Pulls the Queen of Cups

You don't have to go looking for love
when it's where you come from.
-- Werner Erhard

Cards featured in previous posts:
The Emperor on a Caregiver's Path
The Tower and the Caregiver
The Fool's Journey With Dementia

Another day, another tarot card. Today the Queen of Cups jumped out of the deck to share her wisdom as it relates to my life.

This interpretation of the Queen of Cups is from The Tarot Directory, by Annie Lionnet:

A readiness to express your innermost feelings to the world is the message of the Queen of Cups. Someone who embodies her qualities may play a significant role in your life, or you may be ready to embrace these attributes for yourself. You may be about to start a project that gives your creative or artistic skills great expression, or to embark on a relationship that is warm, loving, and sensual. This card suggests that you are tuned into the promptings of your unconscious mind and the inspiration that springs from within. Your foresight and maturity will help you to make choices that are beneficial to you. Your ability to know how you are feeling acts as a strong harmonious influence that others find endearing.

And from Tarot for Yourself: A Workbook for Personal Transformation, by Mary K. Greer:

The Queen of Cups channels feelings, emotions, dreams, visions. She is the Muse, the Enchantress. She is psychic and deeply emotional, fluctuating like the moon in her emotions. She must be near water and reflects the unconscious in others. She is usually empathetic and understanding, but can be moody and deceitful. Love of love.

Questions to Answer: Who wants to protect you and shower you with affection? How are you working with or expressing your unconscious? How are you expressing your emotions? Who is insipring you with their dreams and openness?

Sample Affirmation: I recognize the depth of my emotions and my ability to attract and enchant those around me.

Finally, from The Tarot Handbook: Practical Applications of Ancient Visual Symbols, by Angeles Arrien:

The Queen of Cups represents the responsibility of communicating your feelings accurately during the water sign months of Pisces (February 21-March 21), Cancer (June 21-July 21), and Scorpio (October 21-November 21), or to water sign people in your life. The Queen of Cups also requires that you reflect yourself honestly as you make changes or give birth to new identities, new forms, new talents, or new life styles. It is important that you express yourself authentically to water sign people and in the water sign months as you make these changes or give birth to new parts of your life. As a visual affirmation, the Queen of Cups empowers an individual to express feelings honestly and responsibly.

Oh boy, am I in joyful trouble...how can these cards be so right all the time?!!!

Dancing With Dementia

Sometimes Romeo's mind is so clear that I wonder why he lives in a nursing home, riding his days away in a wheelchair. When he's present like this, his face is bright and his entire body is lived by a loving, playful energy. His dementia is still present, but he forges ahead in life, almost grazing over his memory loss so that it's transformed into a mere blip on his radar.

However, more typical of Romeo's days with dementia are simple inabilities that he notices, that he is frustrated by, that weigh on his mind, his body, his spirit. Gone is the bright light and loving, playful energy that lives through him.

Each week seems to mark increased levels of Romeo's accelerating dementia. He often is unable to articulate his thoughts, unable to find words, unable to use simple logic, unable to make simple decisions. Not that he could do any of that previously. The distinction is that his inability to do any of it is even more than before, and noticeably so.

Often Romeo will not, cannot look at me, cannot look me in the eye. He often doesn't "see" me as I speak with him. He looks at me in the opposite direction of where I actually am. Perhaps he thinks he sees me. Regardless of whether he does or not, I correct his perception, gently moving his head in my direction. I tilt his head upward or to the left or to the right, and remind him to lift his gaze to my eyes. It takes a minute until his eyes "find" me, until he sees me. Then he recognizes me and smiles.

Recently, Romeo's physical therapist called to report an incident with him during a therapy session, marking yet another dip in his dance with dementia. As he walked, she supporting him, from the hall through the door of the therapy room, he became confused, anxious, agitated, hesitant to continue his split-second journey through the doorway. He felt it coming down on him, the doorway. And then the roof. His anxiousness increased, accompanied by fear. All a misperception, thanks to dementia. But he didn't know that.

Calming Romeo down took some time and effort, and bless their hearts for staying by him and helping him through it. I am also grateful that he has no memory of this happening, no memory of the room coming down on him. I, on the other hand, even though I wasn't there, find myself there as it's happening, simulating what I imagine Romeo must have felt. It's frightening, and the fear is intense. Still, my heart is torn wide open and I feel the pain. I am shaken. I cry.

I sit and cry and breathe and feel the fear and the pain, mine and Romeo's, moving through my body. I feel the energy of the fear, the pain, I become the fear and pain. I am the fear and the pain. And then the most marvelous thing happens: I suddenly feel beyond the fear and pain. I feel the core of the fear. I feel the core of the pain. I see the essential nature of the fear, and it is love. Likewise, the essential nature of the pain is love. Once again, love. Once again, it comes down to love.

And I realize that the fear and the pain have transformed into -- yes, transformed into love. I sit silently, tired and spent, and breathe as love. I breathe fear as love. I breathe pain as love. And I realize that the nature of everything, whether it be fear or pain or joy or any other emotion, is love. And love, dear souls, is who I am. Love is who you are. Love is who we are.

Dumped in Dementiaville

The three women who shared a dining room table with Romeo have dumped him.

Yep, they don't want him to sit at their table any more. These women who giggled at his every word, flirting like schoolgirls, don't want him at their table. These women who fussed over him, making sure he has everything he needs, want him to move. These women who wiped up his spills and messes, who waited on him, who hovered around him, asked that he be moved to another table. These women are done with him.

I conducted an investigation to find out why this happened, how this happened, why Romeo's former dining partners want him gone. It shocked me, and it hurt me. (See previous post about Romeo's dining room partners at Dining Room Harem in Dementiaville.)

Romeo believes that the reason he isn't sitting with his harem any longer is because "the powers that be," as he refers to the nursing staff, want it that way. The real story, which I will not tell him, is that the women don't like:

• what he eats (he's vegetarian -- what's offensive about that?!).

• that when he eats, he makes a mess on the floor, himself, the table (so?...they don't have to clean it up).

• that he asks them the same questions over and over again about his food (well, yes, it's part of his dementia).

That's it. Those are the reasons why they want him moved. I did not, will not tell him this. It would probably break his heart. And for me? It set off a long afternoon of crying. How could they not want him around for those silly reasons? How could anyone not want to be in the company of my Romeo? How could they have been so devoted to him and then suddenly change? Whatever would I tell Romeo? Would I ever stop crying about this? And why does it hurt so much?

The nursing staff plans to keep moving him from table to table until they find a good fit for him, find people that he's compatible with. Ah, the thought comes to me that I can tell him that they're moving him around because a lot of people want him to sit at their tables and the best way to make them all happy is to move him periodically to the different tables.

Romeo is satisfied with this answer. Phew! Another disaster averted in Dementiaville.

Being Cute in Dementiaville

In the hallways, common areas, and private rooms at the nursing home where Romeo lives, here are some comments we've overheard about the two of us:

-- They're such a cute couple.

-- She is so good to him.

-- You can see they love each other.

-- He's much happier when she's here.

-- She takes such good care of him.

-- You can tell they like to be in each other's company.

-- She brings him something from Starbucks each time she visits.

-- He misses her when she's not here.

-- Look how good she is with him.

-- They're so sweet together.

And my reaction to all of this? Quite simply, it's . . . of course.