Bowing to the caregivers

I could have named the previous post, “bowing to the caregivers,” but it was also about adventure. So, I chose.

Today, however, I name it “bowing to the caregivers,” a few of whom I mentioned in the previous post. They give me pause, these people who seem to live in a different realm than the rest of us. And then I remind myself that, hey, I am among that group. I don’t place myself on any pedestal, however. The stories others tell bring me to the proverbial knee.

Today I honor Bettie: An email from her husband says it best.  Bettie’s folks are falling more frequently at 99 and 97!!!  Only a matter of time till they roll “snake-eyes”.  Life happens.  Other than that they are healthy and enjoying all the visits Bettie makes to take them to physical therapy 2X/Week and Occupational therapy 2X/Week and to Doc at least once a week.

Good Heavenly Days, my mother used to say. Or as my friend, Irene, used to say, Good Heavens. Both fit. An exclamation, an appeal, if you will.

I have a nervous breakdown when I take mom to one appointment a week. FIVE? No freaking way.

But way! Bettie does it. So today, as I prepare to visit mom, I bow to Bettie. She is my heroine, my muse and my inspiration. I will not complain this day. Or maybe all week. Thank you Bettie.

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The caregiving adventure

Adventure: [From Wikipedia] – “An adventure is defined as an exciting or unusual experience; it may also be a bold, usually risky undertaking, with an uncertain outcome. The term is often used to refer to activities with some potential for physical danger, such as skydiving, mountain climbing, and or participating in extreme sports.

“The term also broadly refers to any enterprise that is potentially fraught with physical, financial or psychological risk, such as a business venture, a love affair, or other major life undertakings.” My italics.

It may not appear that way from the outside, but caregiving is fraught with physical, financial, and psychological risk.

  • Physical because caregivers get burned out. Books and blogs and manuals describe the physical and emotional risks to the caregiver.
  • Financial because caregivers often give up their jobs to take care of a loved one. Some have to take a loved one into their home, or the ill person was the source of support, or … the scenarios are endless.
  • Psychological because of the emotional impact of watching a loved one slowly decline, feeling powerless to help, guilt for not doing more, and the anticipated grief that knows no resolution.

Many years ago I talked with a life coach/friend about my commitment to caretaking mom and said I would see it through to the end. Mom helped me when I was a single mom, moved to Washington to be closer to us while my son was still young, and helped me when I went back to school. Even without that, there was no way I would abandon her…that was never a question. I told my brother, who was moving to Arizona at the time, to go have your life, I’ll take care of this. I had no freaking clue what I was saying! Fifteen years later, I want to know, can I take it back? No, the answer is no.

Mom and I had an adventure we had to take mostly by ourselves. No one could travel with us. We embarked across a landscape of emotional landmines, fraught with unexpected dangers. The adventure took each of us through a dark and tangled forest of unexamined denial, unexplored anger, and unresolved guilt.

It brought us to the quicksand of profound vulnerability and powerlessness that could never have taken place without a deep commitment and, in the beginning, an energy I do not feel now. My spirit is willing, my commitment stalwart, but my knees sometimes buckle. But now there are days of grace, sealed with a kiss, that says, We did it. There are still  potholes we stumble into, but all is well.

It is not a stretch to create an analogy between climbing a mountain to caretaking a loved one. Climbers undertake a perilous journey, enduring all manner of excruciating cold and deprivation and physical exertion few can imagine. When the air becomes rarified and it’s all the climber can do to take a breath, the most stalwart climb on, risking life and limb to complete their goal. Once they reach the summit, there is jubilation and relief, a profound sense of accomplishment at a job well done. Then the descent, often harder than the ascent, but most make it  to tell the story.

Caregivers may not climb a physical mountain, but it is a mountain in all other ways. The days when you can’t catch your breath because of the heart palpitations, the days that you long for a deep sleep without worrying the phone will ring, the days you want a break to take a walk (for those with a loved one at home)…again the scenarios are endless. And then the descent …

Today I honor those brave souls who have undertaken the caregiving adventure in all its different forms. I bow to you.

Mike who gives care to his wife, Lynn, who is dying of Lou Gehrig’s Disease. My younger friend whose husband had a cancer removed from his neck nearly two years ago and is still on a feeding tube. The woman who has taken care of her disabled daughter for 42 years. My friend whose son has schizophrenia.

Their adventures are not to be minimized. It is not only an adventure of the body and the emotions and the pocketbook, but a journey of the spirit. I believe we are here to take care of one another. But some days, all caregivers ask is, Really? Isn’t there more?

Stories of the day

The sun came out today, adding some warmth and light to the day.

When I went to mom’s I ran into Delores, an 89-year-old co-resident. She has lived in mom’s building for five years. She said, “I used to play 65 [a card game] with your mother. But she started making up her own rules. We told her she couldn’t do that if we couldn’t do that. She never came back after that.” Mom told me several years ago that the reason she quit playing cards was because no one could hear. DH said mom always plays by her rules.

I talked to mom about calling me when she finds herself in a pickle and to stop trying to get out of pickles on her own, as in, playing by her rules. It just makes a bigger pickle. If you fall, call the manager, but if you have other pickles call me. She doesn’t want to “bother me,” except that unattended pickles bother me more.

The weekend caregiver told me today she can’t work weekends past the 8th. Then she texted me tonight and said her grandmother had a stroke in a town two hours from here and would I please find someone to cover for her tomorrow and Sunday.

Mom called tonight and asked me if I still had the birthday card. Several years ago when mom was still driving, she bought a birthday card for me. It was a perfect mother to daughter card extolling my virtues and my potential for the future and how much she loved me. I kept it. The next year, mom inadvertently bought the exact same card. It really was perfect. I saved that one, too. And ever since mom quit driving and she hasn’t been able to buy cards, I take her one of the twin birthday cards and she signs it with the date.

Family dynamics today, about which I won’t tell stories, other than to say, I made a decision to assume that I’m caretaking mom by myself. Well, some might be saying, well, duh. that’s pretty obvious. But I’ve had some expectations over the years. I decided, finally (I’m a slow learner), to let go of my expectations and save everyone the trouble. It’s not being a martyr, it’s simply being tired.

It’s one of the reasons I decided to garden alone this year (except for DH, of course). It takes a lot of energy to plan out a garden with another person–energy I don’t want to expend.  What I want to do can be accomplished with less expenditure of energy if I don’t spend my time explaining, or discussing, or problem solving, especially when the other person may not be in a position to problem solve. It’s a more lonely journey, but possibly more efficient for the time being.

And then she fell…

Our good friend neighbor invited DH and I over to watch the movie, “Red,” last night. Her two youngest had gone to camp for three days and her next oldest was out to a birthday party, so we curled up on her couch, (I with a hot water bottle she had prepared), and laughed out loud for two hours.

Twenty minutes into the movie, however, mom called. She said she had been shaky after the day at the doctor and that coming back from dinner [something had happened] and then she  fell. She pressed her Link to Life button and the managers came running. I couldn’t ask her any questions, but she anticipated at least one question, and said, “I’m not hurt.” Then she said she wouldn’t be able to take a shower. I said okay and said I’d call the caregiver to see if she could go early. She did.

Then I called the manager, who said they had gone running to her apartment.  The lady manager has a sprained ankle, so I expect that she hobbled.  They checked mom out and then started to leave her apartment to call the paramedics, which is the rule. Don’t pick up a resident if they fall. Managers at other facilities have been sued.

According to the manager, however, mom said, “Don’t leave me,” [in her most imperious voice lying in a heap on the floor]. “Pick me up!!”

“Are you hurt anywhere, Sybil?”

“No, I’m not hurt, pick me up.” And they did.

“She’s tough,” the man-manager said. “And she has a strong grip.”

Uh-huh, I said, which is why I don’t want to be around when she starts to fall. I weigh 20 pounds more than she does, but don’t have the muscle strength to keep 95 pounds from crashing, especially with a vice-grip attached to my arm. You would never know looking at her ancient hands how powerful they really are.

The caregiver texted me later–using at least ten text messages–to tell me more. Mom needed a shower, she said, but was exhausted. She was confused about her pills, had had an accident, (of a second kind) … But the caregiver said, “We’re just going to take it slow.” And they did. Nearly three hours later, mom was finally in bed. I told the caregiver she was the recipient of the angel award.

The caregiver said, “I’m worried. She’s already asleep [at 10:15 p.m.). She didn’t do her normal routine of up and down, up and down, before finally settling down.”

I thought, count your blessings, and said, “R, do not fret. If mom laid her head down and never woke up, we would grieve, but we would also rejoice. All of this is mom’s worst nightmare.”

Twelve stitches

The January overcast hangs over the valley like a stone blanket. I feel like the Great Blue Herons that sit by the river, hunched and gray, waiting.

I look for joy but without the sun, without warmth in the waiting, I cry at 40s music that plays in the CD player while the dermatologist cuts a cancer off mom’s chest.

Twelve stitches later, twelve years later, I wipe my tears, get up and take her to the restroom, where she tells me, “I just don’t know about that doctor.”

I lose my patience–once again–and tell her he’s one of the best. But he “forgot” he was going to excise the cancer, and instead scraped and froze it, before I corrected him and he excised it. I didn’t really blame her for doubting him. But after hearing the litany of complaints that are forthcoming during any doctor’s visit, including a total of 45 minutes standing in the restroom waiting for her, I simply lost my patience.

I’m always wrong, she said. No, mom, you’re not wrong, it’s just the complaints that get tiresome. There’s no talking about it though. I’ve hurt her feelings. She’s old and uncomfortable. In the waiting room she put her head in her  hands and said, “I think I might just stop taking the medicines.”

I help her with her coat. We take her home. Later I’ll go back with an ice pack and write out the wound-care directions for the caregivers. I talked to a new caregiver who arrives from California in two weeks. She is a medical assistant, so there’s little extras she can do if necessary.

I’m home now and the house is nearly dark. I need to turn on the lights, light a candle, build a fire, anything to bring warmth and light into my heart.

Photos tell a different story

Since I love photography so much it surprises me that I’ve only posted one photo of mom as a very old woman. No matter our age, we have every age we have lived within us.

Sybil (rt), with brother Gordon and mother Florence, circa 1922

This is one of my favorite photos of mom with her mother and brother. For starters, it’s simply a great photograph. I love the directness of their gaze, without guile. The photographer was thinking about placement of hands: mom’s intertwined on her mother’s shoulder, suggesting a little nervousness. My uncle has one hand in his pocket and another in his mother’s hand. Mom has one knee up on a sofa, which places her knee in line with her mother’s arm and elbow and creating gentle folds in her cotton dress. The contrast of the dark dress of grandmother against the white of my mom and uncle’s outfit is also striking. I can imagine the photographer asking Mom to turn her head slightly and tip her chin.

 

Another one of my favorite photos. It could have been taken in the 1960s. Girl with long hair at the beach in a sweater and bellbottoms. Not soon after this photo was taken mom had her hair cut short in the 20s style. 

Sybil at the beach, circa 1924, (approx.)

 

To anticipate is to drive yourself nuts.

Blogger hermistonrain writes with a stark poignancy about caretaking her grandmother. A few days ago, she wrote that she was anticipating that her grandmother’s aneurysm might burst. I wanted to jump up and down and say, “NOOOOO, don’t anticipate.”  But she can’t help it. It’s just what we caretakers do when doctors tell us that this or that is likely to happen.

I’ve been anticipating medical events for years that have never happened; an aneurysm, a cancer, a stroke, that doctors assured us would take mom, if not this moment, but soon. It won’t be long. It will be three months. It will be eight weeks. They better come now if there’s more to say. No? Well, soon. After all she’s nearly 102.

Thirteen years ago mom and her doctor agreed that they would do nothing to correct her aortic aneurysm because it would be too dangerous for a woman her age, and after all  it would be a nice way to go. “And after all,” mom told him later, “You promised me I could just drop dead.”

We have been anticipating mom’s death for so long, living in a state of perpetual anticipated grief, that I’m not sure we’ll know what to do when we actually get to grieve.

Years ago one friend said, “She has to die sometime.” It was a flip comment, but we laughed together. Now it’s not so funny. We go day by day with that relentless anticipation that wears on a caretaker. It’s the specter of all that can go wrong, wondering what you’ll do when it does, and then when it does, you just put one front in front of the other. It’s especially hard when so much has gone wrong and then has remarkably righted itself, like a ship foundering because the ballast is off-kilter, but then the ballast shifts and the ship is sailing straight again.

Mom’s doctor recommended a private nurse to check her out yesterday. The nurse listened to mom’s lungs and heart and stomach. She asked her questions about how she was doing and mom replied, “I’m doing well,…” while I’m in the background mouthing the words, “Ask her about…”.

Later I met with the nurse out of earshot (which is a few feet away, but we met in the hall). I explained some behaviors and she said, “Well, I can ask her a few more questions.” I left to deliver a sample to the lab.

The nurse told me later that mom is doing great. “She looks good. Her lungs sound fine. She answered 28 out of 30 questions correctly and then said, ‘I’m not answering any more questions. I’m going to the bathroom.'” The nurse liked mom. She said she’d give the doc a full report, which is, yes, She’s doing fine.

People are going to think I have a version of Munchausen Syndrome, a psychiatric disorder. The person feigns illness to get attention, or Munchausen Syndrome by proxy is when you feign illness in another, mostly typically a child, to get attention. I DO NOT HAVE MUNCHAUSEN SYNDROME. There really is stuff going on, honest. I’m just trying to anticipate. Aha. There is that word again.

The word anticipate is generally used to mean “looking forward to,” but in this case it simply means, “to give advance thought, discussion, or treatment to….” I give constant advanced thought to the possibility that this or that will happen. It’s simply what caretakers do.