It’s in the noticing that things change

“It’s not the load that weighs you down, but the way you carry it.”

This quote was attributed to Lena Horne last night during an Academy Awards tribute. I’m not sure she said it first, but she must have said it at one time.

A few hours earlier a friend asked me a question: “What it is about caring for your mom that makes you feel so tired? What is the story you are telling yourself? What is the wiring in you that makes you tired,” he asked. “What is the belief you have? What is the internal conversation?”

“It shouldn’t be this hard,” he added. “What is it that you feel trapped by?”

He asked these questions after he said this:

“Having the responsibility for someone else’s life that has been unpredictable for 20 years…Someone who has been in your psychic space and your family space. And with a requirement of the family that you cater to the needs and whims of that person…is a huge undertaking and incredibly draining. You’ve been doing it for a generation. People have been born and grew to adulthood in the time you’ve been taking care of your mother.”

I wanted to say, so, which is it? Either it’s incredibly draining or it isn’t. But I understand what he’s saying.

Is there a way I’m carrying this load that is exhausting me. If I could carry the load in a different way, would I find more joy and meaning.

“You could go every day and have a joyful awareness that you are taking care of your mother and that she has highest quality life possible in her last year [or five],” he said.

“You could get it every day what a cool contribution you are making. You have things to write…maybe to teach others and help them with they are going through. Maybe there is an organization to create.”

I told him I do feel satisfaction and sometimes joy in caring for mom. I am grateful for the experience. I’m glad I’ve been able to help her maintain a quality of life. I take pride in being a good and caring advocate. I find fodder for my writing and satisfaction in sharing my experience.  I sense that my writing may assist others who are on a similar path–or about to enter the path.

But why am I so tired?

My friend suggested that I observe my thoughts for a couple of weeks to see what the story might be.

I wanted to say, “No, it makes me too tired.”

There are also other possibilities. Chronic pain in my foot. Not being able to hike and walk, two of my favorite things to do.  A long cold winter. Unrealistic expectations of myself and from others that I shouldn’t feel tired, or complain, or have a problem with it. Or, guilt that if I were more enlightened, I would just smile like some of those people I know who walk around with beatific smiles and make me want to slap them silly.

Maybe I’m carrying a load that I’m not even expected to carry? Have I been carrying more than my share, or taking on responsibilities that are not mine to carry? Is it as easy as simply shifting the load. But to where?

Answers might include shifting the load to God…you know that poem about the footprints in the sand. There have been many moments of intervention into the affairs of mom that I can point to as a higher power carrying the load. However….

I will be obedient to my friend’s suggestion and observe the story. After all, I might learn something. And isn’t that the point?

He also added that there’s really nothing to change. It’s simply in the noticing that things change.

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“A poor epitaph for a long life…”

One of my favorite bloggers, Flamingo Dancer, posted a story today about her 93-year-old father-in-law. It provides perspective for those who are dealing with difficult people, i.e., those who have lost their soul in the process of growing old.

She writes: So, it is a conflicting time, balanced between doing what is “right” and expected, with the exhaustion of a life time with a man who shows no love, except for himself. Always himself.

No doubt, they will tire of FIL’s behaviour in the hospital soon and shoot him […] back home within a day or so, to resume another round of serving and waiting.

(I suggested in a comment to her post that she stop the sentence at him…but that’s not nice, is it.)

FD is an upbeat writer, but there is no way to make this latest post of hers upbeat. Her story gives me perspective (as in deep gratitude that my mother has her humor and her soul fully intact). But there are parts of it I relate to. The phone ringing in the night. The attitude that the aging person has a right to live where they want no matter how it affects everyone else.

And this:

In all, what this situation has brought home to me, is the need to sort out family relationships before old age brings a new and heavy burden to not only the individual, but to the family.  If a family is happy and functioning, then the coping mechanisms are strong and burdens more easily carried. If the love is gone, or was never there, then the cost to all involved  adds to the trauma and the exhaustion.

To me, it comes down to the simplest of rules – treat others the way you would have them treat you. Love and you will be loved in return. Centre only on your individual needs and wants and your life will be viewed as a burden that must be endured out of a sense of humanity.

A poor epitaph for a long life, don’t you think?

Yes.

She’s oozing out of your pores

I met a woman a few days ago and learned that she had been her mother’s caretaker (as in, taking care of everything), for ten years. Her mother died 11 years ago.

This is a part of her story.

“I was 44 when my mother had a massive stroke. She was only 69 and was not expected to live. They said she was going to be a vegetable. It was not the case. She had to learn how to talk and eat and walk. I am the oldest. I wanted to help her. She got better and better and, of course, she was ornery. She was able to come home after two months. The [caregiving] help didn’t work out too good. She was real controlling. The next step was will be there someone available for her to still be at home. I took it upon myself to be that person. There were four kids. But mom was real hard to get along with.

“Along with being a caregiver I found baggage from the past was there. Because of it you try to overcome, to compensate, be best person you can be, be everything for them.  Pretty soon, it envelopes your life..You don’t realize it…but it’s in your mind, in your skin, your pores, your physical being, everything.

“I worked a hard job in a grocery store. I would go in to mom’s three or four times a week and clean her house. We couldn’t keep any kind of help. I would take her grocery shopping, do anything to keep her happy so she could stay in her home. I was also married. My husband was so good to me and he never complained.

“The thing of it is, if I could look back, I’m not sure I could have changed anything, except that I wish there was more of me for my husband, more ‘can we get away.’ But I would say, ‘no i can’t do that, because you know I can’t get away.’

“There were three siblings who lived nearby. My brother did the books for mom. Once in awhile my sister would help out. If I asked she would have. I can’t say anything about them. They are great people. My other sister was involved in her own life. I couldn’t trust her to be there. I was always on time, I would drop everything. I’m sure I helped her live longer.

“Without getting mad, how do you say, ‘do you know what’s involved here?’

“I developed fibromyalgia. My hair fell out…you don’t realize what it takes to get yourself back when you reach a certain age.”

“When you go through any kind of pain and anguish…we absorb it into our muscles, into your whole being. So you may wake up with stiff neck, but it may be just a pain in the neck.

“When I relaxed, it got better.

When I described some of my experience, she said, “You are a puppet. you have strings hooked. It’s not necessarily that your mom is pulling strings. It’s not concious. It’s everytime she does something that you have to figure out, not knowing the next situation, not knowing when the phone is going to ring.

“She’s oozing out of your pores,” she said.

“No one else in the family knows every nuance of your mother like you do. It’s categorized in your brain. Nobody else can do it better.”

She said, “I asked myself, Why is this happening, to be the child, and then have it reversed. Then you become the caregiver. It’s all about guilt and forgiveness. It’s huge.

“After mom died I was devastated. I ended up quitting my job three months after she died. I regret that. I miss the work…I miss the relationships, being busy…but I also miss the time I could have had with my husband that I could have had.

“But it’s because through all the crap, she became my friend. I didn’t have anyone to care for. The answers are gone. It really kicked me in the rear-end.

“You don’t realize, that no matter what baggage you are carrying, you are going to find a hole in your heart.

“Now we have my husband’s father living with us and there’s some days I want to scream.

“I pray that I will be a good person…but I have horrible thoughts.”

The Golden Years

When I arrived at mom’s yesterday she seemed depressed, which is not usual for her. Most of the time she is cheerful–at the very least, neutral. But it’s not often that she is visibly depressed. My DH often remarks that it amazes him how she maintains a sense of humor.

When I asked her how she was she lifted her hands and pointed around the room, “Oh, all of this,” she seemed to say. The meaning? I don’t want to be here and don’t understand why I’m still here.

There’s nothing to do but understand.

“I know it’s hard, mom.”

Then she said that a woman came up to her in the dining room and said, “I’m not as old as you are, but I’m catching up.”

Mom said she replied, “Whoever called these the golden years didn’t know what they were talking about.”

More like the rust years.

Then she recited a poem–actually just two lines from a very long Robert Browning poem called Rabbi Ben Ezra.

Grow old along with me!
The best is yet to be.

She said, “Whoever wrote that was a little mixed up.”

The next line.
The last of life, for which the first was made.

Mom clearly doesn’t believe it for a minute.

A caregiver called today to tell me that mom’s apartment was hot and that she had turned the heat down. I had a note on the heater not to change it unless I was informed. Sometimes it gets too hot, and other times it too cold. The last time we had single digit temperatures the heater froze up–as in, stopped working. Mom was rather cold by the time  the caregiver arrived in the morning. Mom is unable to adequately discern when her apartment is too hot or cold.

It’s another reason I worry about her being alone in her apartment. When the caregivers leave at 11 she’s on her own until morning. That means that if the heater freezes up, she’s going to get very cold, and not even register that it’s because the heat is off. It’s only supposed to be six degrees tonight. I called the manager this afternoon and asked if they might check her heater. She didn’t exactly brush me off, but I doubt that they did because when the nighttime caregiver arrived she said, “It was chilly.”

The managers often say how much they like mom and that they want her to stay at their facility.  “Oh, we just love her,” they say. But I wonder how they would feel if a resident died of pneumonia because the heaters weren’t working properly.

Golden years, indeed.

Touching the void

Touching the Void is the true story-movie about two mountain climbers who climb a 22,000 peak in the Andes. Joe Simpson and Simon Yates were on their way back down the mountain when Simpson fell and broke his leg. Yates tied a long rope to each of them and began to lower Simpson down the mountain. After lowering his partner over a sheer face, however, the rope jammed. Yates could feel Simpson’s weight dragging him off the cliff. There was no way to communicate. After an hour, Yates knew that to save his own life he would have to cut the rope.

It took courage, but he sent his friend plunging to what he thought would be Simpson’s certain death. Yates got himself off the mountain (a feat in itself) and back at base camp, he nursed emotional and physical wounds.

In the meantime, Simpson did not die, but had fallen into a crevasse. He reeled in the rope and discovered it had been cut. Then, starving and with a broken leg, he managed to crawl out of the crevasse and through ice fields to make his way back to the base camp. He and Yates were reunited.

Yates and Simpson returned to civilization. Yates became known as the man who “cut the rope.” Simpson wrote a book and was glorified. But if Yates hadn’t cut the rope neither of them would have survived. Cutting the rope saved them both. And even if Simpson had died, Yates would have lived.

Should Yates have cut the rope? Wasn’t his life of value–as much value as Simpson’s life?

How about a caretaker with a disabled husband at home? Surely she’s not going to abandon him, but at what point does she save her own life when she discovers she has fibromyalgia and heart problems. What about the man who has a disabling disease. Should he expect his 120-pound wife to be his caretaker, helping him in ways that puts her at risk of hurting herself? What about the man with a wife with Alzheimer’s that becomes a threat to her safety–and to his?

A friend’s husband has a medical condition that has dramatically changed their life and their marriage. She sees his vulnerability, but he doesn’t see hers, because he is the one who is ill. Although she isn’t doing physical care, his illness has created chaos in her emotions. She’s not even 50. When does the caregiver cry uncle?  When they, too, are ill and dying, which happens to too many?

When do we cut the rope?

Thankfully I’m in none of these situations. There are no easy decisions in any of the above and myriad other scenarios. But experiencing the caregiving adventure has made me acutely aware of the burdens people are carrying with little support and a mountain of expectation that they will continue to carry the load. I am in a similar situation in that the expectations lay in my lap to care for mom. And that has been a tiresome burden at times. But after all these years (I’m a slow learner) I’m learning to cut the rope by setting clear boundaries and taking time for myself without guilt or excuse or apology.

It’s not about abandonment of our loved ones.  I continue to care for mom, perhaps in a more loving and free way. What’s at stake is balance., not blind, selfless sacrifice. There is nothing selfless about that kind of sacrifice. It’s called martyrdom. It’s called being trapped. Of course, some times, there’s no way out. You do what is in front of you to do.

A family member once told me about friend who was dying of cancer. In the context of a complaint I made about mom, the family member said, “Well, M was dying of cancer and was changing his elderly father’s diapers.” My first response was anger because M clearly had choices. Instead of hiring caregivers for both he and his father (who had millions), he sacrificed on the altar of something I don’t even understand. It’s an extreme example. But all around me I see people sacrificing on that same altar.

Do not misunderstand. I know that we sacrifice every day for those we love. This is not the sacrifice of which I speak. This is the sacrifice that devalues one life for the sake of another.

I’m not sure what touching the void really means in the context of this movie, other than Simpson and Yates faced the ultimate void. But the message speaks loud and clear.

R.I.P. Joan and Letty

Late yesterday morning my son sent me a text to let me know that the mother of his good friend died earlier in the morning. Last week she went to the hospital because she wasn’t feeling well and they discovered that her sodium levels were low. The hospital gave her sodium to bring the levels up, but they gave her too much, causing brain injury.  Joan, in her 50s, left two sons, 29 and 31 and a 15-year-old adopted son.

Soon after my son sent me the news of Joan’s death, I went to the local health food store. I worked at the store in the winter of 2005 waiting for my journalism job to come through. Bill and Lettia were my employers, although Letty rarely came to the store because of a bad heart.  But when she did come she spread her love.

I greeted Bill and moved toward the beans. He came up beside me and I said, “So how are you two doing?” He said, “What? Who?” And I said, “You and Letty.” He put his arm around me and said, “I lost my Letty Dec. 23.”

Taken with the news of Joan’s untimely death, I let out a sob. For the next 10 minutes, Bill told me about Letty’s last few months. I hugged him, told him I was sorry, and finished my shopping.

Yesterday afternoon, the local news reported that three people–a local businessman, his wife and 98-year-old mother–had been bludgeoned to death in their home.

When I went to see my very much alive nearly 102-year-old mom I was thinking about life and death and how completely arbitrary it all is.

I told mom about the boys’ mother and Letty.

I said, “None of it makes much sense, does it?”

But Mom said, “Yes, there’s a reason for everything.” I wondered if she would have said that about the trio who had been murdered less than 20 miles from her apartment.

Mom says she has had a “glimpse of the other side and it’s awesome.” She said this seriously, without a hint of joy, as if contained within that statement was her own uncertainty.

But she insists, when others show their doubt, that all is well, and that there is a plan.

I have not had glimpses of the other side, but I believe that others, including mom, have. I also believe we are spiritual beings in a human body destined for more than we can even imagine.

But knowing that doesn’t stop me from grieving for those who are lost. Knowing that doesn’t stop me from puzzling over the randomness of death. You would think that in my years of living and experiencing loss that I would come to terms with it. But I haven’t. I lost my dad when I was one. When I was 15 a beloved neighbor, who had taken me under her wing when I was younger, died of cancer. When I was 18 a friend was murdered by a young priest. When I was 20, my father-in-law died of a heart attack on his first ski trip after retirement at age 46. When I was 24 my beloved Grannyma died. When I was 27 I experienced my first of two divorces, another death.

The sadness of it was that I had not been taught to grieve. Grieving is a tricky business, and when it is denied, it only comes back worse. The path of grief must be followed;  the side trails only end right back at the beginning.

I pray that my son’s friend and brothers follow the path of grief to the end of its journey. I pray my friend Bill will find solace in an empty house and a way to a new life without “his Letty.” And for the families of those who met an untimely death at the hands of a murderer still lurking about our valley, I pray solace and comfort. For the families of those murdered by Somali pirates, I pray comfort.

For mom? I pray she will continue to feel confident in what waits her on the other side.

Wine tasting

A friend and I went wine tasting today in the Rattlesnake Hills and Yakima Valley AVA (American Vitacultural Area). More than 30 local wineries hosted the annual “Red Wine and Chocolate” weekend. My friend and I only visited about five wineries, but at each we were treated to some great wines and at one winery an array of fruits (pineapple, blackberries, strawberries, brownie, and bon bons and chocolate fondue) paired with five different wines. The tastes, oh the tastes.

On our way back up the valley, we stopped at a winery I didn’t recognize. Two women were alone in a small tasting room. One was a writer, Sandy Hill, who had written a memoir and had won an award, but had not been published. We had fun time talking with Sandy and the other woman and eventually my friend bought me a bottle of Syrah. I told them I wrote a blog about mom and talked a little about mom wanting me to buy her a bottle of wine and how I had demurred. But Sandy, whose mother died a few years ago at 94, was adament that mom deserved, at this age, a little wine.

On tour way back to the western end of the Yakima Valley to another winery, we stopped at mom’s. She was lying in bed getting ready to take a nap. I said, “Mom, we’ve been wine tasting, so we brought you a little wine for you to have before dinner.” She smiled broadly and said, “Oh, thank you for thinking of me.” I poured a glass of Syrah, covered it, and my friend and I left her to her nap.

Although we had a terrific afternoon of laughter and sugar overload, my favorite moment was seeing mom smile up at me and thank me for that glass of wine.