Reverse Empty Nest Syndrome

http://www.flickr.com/photos/run_dorkas_run/When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”

Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.

Great timing.

Before this, the longest I had gone without seeing my mom was, maybe, 48 hours……………. When she spent time at the geriatric psych ward last February, I was told I had to wait for her to be assessed.

Torture.

Letting go is not my thing.

This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.

Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….

I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.

I don’t expect either parent to be alive when I turn 40. That’s four years from now.

A reverse empty nest.

Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.

I am perpetually drowning in the minutiae.

***

“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.” 

“Hi Kathy, Sure. How are you feeling?” 

“I’m OK. I just miss my mom is all.”

“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”

“Should I leave my bag here?”

“I don’t think that’s necessary.”

My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and  her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.

A few seconds pass and she starts yelling.

“It’s me! Your daughter! I love you.”  She’s either horrified by my presence or saying hello.

Hard to tell.

Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.

“Hey Margie, how are you? Have you been taking care of my mom?”

“Oh, sure.”

I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.

She obliges, of course.

I walk outside, talk with some of the caregivers, get in my car and drive to the office.

Just your typical Monday morning.

>>Flickr pic by Run Dorkas Run

Death, Compassion and Humor. Not In That Order

Hi Kathy, we’ve got the two letters from your mom’s doctors, so you can come in and sign the DNR.

Oh, great. OK. What time? Noon? OK, I look forward to it. I mean, I’m not looking forward to it. Um, you know what I mean.

And that is how I made the appointment to sign my mother’s death warrant. Over the past eight years, I have had to make many incredibly difficult decisions on behalf of my mother……………………. some are more difficult than others, some can leave you curled up in a ball in the middle of an ER. Signing the DNR (Do Not Resuscitate) was an easy decision to make, by easy I mean, I would remain upright as opposed to curled up in a ball crying……………………….. of course, my mom already had a legal document stating that she did not want extreme measures to be taken to prolong her life………………… what she did not have was an actual DNR, an orange piece of paper that the paramedics look for before going above and beyond to save a life. It took me a couple of months to actually get this taken care of…………….. yes, I knew what to do, I knew what needed to be done, but getting it taken care of………..well…………….asking her doctor to write a letter stating that she has a terminal disease with no chance of ever recovering can kind of fuck you up………………. psychologically speaking, of course.

So, I made an appointment for myself instead.

Great to see you…. you look good. What’s can I help you with?

Well, you know I still have that weird pain on my right side; I’m still constipated, but that’s probably stress; and I need you to write and sign a letter stating that mom’s dementia is terminal and stuff. It’s for the DNR.

Sitting in his office, making my request……………. it just struck me as funny………….I don’t know, the whole experience was sort of Seinfeldesque in nature.

Finding the humor in my suffering, our suffering, is, I suppose, a survival skill……………. it’s what helps me cope with my walking grief………….I actively try to seek out the funny. I have to; it’s what keeps me sane, because to experience this kind of sorrow day-in and day-out, with no relief in site, no source of comfort, no regular family support, no hope that she’ll one day be cured, well, that dark, depressing vortex can appear inviting after awhile…………………… because face it, getting out of bed to watch death dance around my mother as she languishes in this life is neither healthy, nor is it how I like to start out my mornings………………..

But I do.

You do.

It’s what we do because it is the right thing to do.

Even though we’re all on the verge of folding our hands.

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

Hi Kathy, good to see you, come on in…………………. I walked into her office and sat down, ready to sign the DNR. It didn’t feel like a big deal, after all, I’ve signed plenty of documents absolving the medical community of all responsibility should they accidentally kill my mom……………………….. it was just another piece of paper. Until she started reading the paper and telling me what would happen if (and when) something happens to my mom. There will be no cardiac compression, no endotracheal intubation, no artificial ventilation, no life support drugs or emergency medical procedures……………… the words sit in your gut for a while.

She handed me a tissue.

I signed the document.

She signed the document.

The witness signed the document. She touched my shoulder and left the room.

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

I am convinced that we confuse compassion for pity……………… compassion is something else; compassion takes time…………. pity, however, is much easier to dole out. Compassion is a rare quality which few possess and I now understand why. People don’t want to talk about this disease; they don’t want to witness it; they don’t want to walk in your shoes; and they don’t want to take the time…………… this is compassion as I know it: A former colleague sent me an e-mail after learning that my mom was being housed at the psychiatric unit last February. Although he had never met my mother, nor did we keep in contact after I left my job, he offered to sit with my mother. He said, “I have an extra set of hands and if it is in my power, I would like to help.”

That is compassion.

………………..

The Moment I Knew………. The Moment I Entered Denial

My Moment

Some exciting news came in the mail today…………………………. my contributor’s copy of the new book, THE MOMENT by Larry Smith of Smith Magazine (finally!) arrived. Over a year ago, Larry asked me to contribute something to this wonderful project he was working on, which is out and available to buy…………………… THE MOMENT contains stories by writers and artists — both famous and obscure (like me) — who share how a single moment changed their lives……… in an instant and forever.

Or as Larry puts it…………….. “The turning points, revelations, epiphanies, dramatic changes, the opening or closing of a door—in a life, a career, a love—can occur in a single glorious, terrible, unpredictable, serendipitous, crucial, calamitous, chaotic, amazing… Moment”

My moment revolves around my mom…………………………….. and the moment I knew; the moment I went straight to denial.

 

A huge thanks to Larry for including me in this book. I am beyond humbled. Larry, you always gave me a shot and you’ve never doubted me. Thank you!

 

My Demented Mom in the Sacramento Bee… “We don’t have survivors.”

The Sacramento Bee interviewed me for a story about early-onset Alzheimer’s… the piece ran last week. Not sure how much attention or awareness I brought to the issue, but hopefully, my tiny part in this story will get more people thinking… dementia is not an old-person’s disease. People as young as 30 or 40 have been diagnosed with dementia… people with young children, teenagers. This disease does not discriminate. It does not care who you are, what you do, what color you are of if you’re rich or poor…………. can’t help but roll my eyes at the pettiness in our politics, when I know, you know that in 40 or 50 years, the real crisis isn’t going to be whether the Earth was formed 6ooo years ago or 6,000,000,000 years ago… the crisis will be this disease. A disease we are neither prepared for, nor can we afford. Hopefully, people will start to wake up…. listen up world, this disease is coming for you and its merciless.

 

Early-onset Alzheimer’s strikes people in their 50s 

acreamer@sacbee.com

PUBLISHED THURSDAY, AUG. 18, 2011

Starting in his early 50s, Lou Bordisso Jr. knew something was wrong.

One time, he got lost in a Macy’s store in San Francisco and couldn’t find his way out. Another time, expected in a meeting, he rode confused from floor to floor in one Financial District skyscraper, then the one next door.

“I could not for the life of me find the conference room,” said Bordisso. “Then one day, I couldn’t remember how to log in to my computer. That was the beginning.”

At 57, the American Catholic Diocese of California priest should be in the prime of his life – but last year, he was diagnosed with dementia related to Alzheimer’s disease.

There’s good reason we think of Alzheimer’s as a problem of old age: Age is the degenerative brain disease’s only known risk factor. Fully 90 percent of people with Alzheimer’s are 75 and older, experts say, and nearly half of people over 85 have it.

Even so, according to the Alzheimer’s Association, a small sliver of the diagnosed – up to 5 percent – haven’t yet seen their 65th birthdays. That means 200,000 Americans younger than 65, including 19,200 Californians, have the disease.

The early-onset form of Alzheimer’s is little understood. Experts know that for a small number of people whose memory loss begins in their 30s and 40s, genetic factors play a role. But why do other people in their 50s and early 60s get the disease?

Researchers don’t know.

“It’s a less common age to have this disease,” said Judy Filippoff of the Alzheimer’s Association of Northern California. “At 65 and younger, most people don’t expect this diagnosis. They have many responsibilities, and they haven’t slowed down, either physically or mentally.

“And now they have to change their life in ways they didn’t imagine. It can be quite a shock.”

Much too early, people diagnosed with early-onset Alzheimer’s lose their past as well as their future. The disease is both progressive and fatal and has no known cure.

Mike Fisher spent his career with law enforcement in Contra Costa County. At 50, he was Lafayette police chief as well a Sheriff’s Department lieutenant.

Then he was diagnosed with Alzheimer’s.

“I was having a hard time remembering codes,” said Fisher, now 53, who lives in Benicia. “I was having memory problems in my 40s, it seems like. I hit 50, and it’s gotten worse more quickly.”

Many people with early-onset Alzheimer’s still have kids to raise and families to support. Many are helping care for their own aging parents or planning for their own retirements.

Suddenly, the future they mapped out disappears, not only for them but also for their loved ones.

In that sense, Fisher is lucky: He retired from the Contra Costa County Sheriff’s Department with generous pension and medical benefits, and his 18-year-old daughter recently entered community college. Yet he knows his wife of more than two decades will be his caregiver one day.

“You plan as much as you can,” he said. “We go to support groups, and you can see the progression of the disease. It’s kind of scary, to be honest. It can be very sad at times.”

In her blog inspired by her mother’s dementia, 34-year-old Phoenix writer Kathy Ritchie has discussed Alzheimer’s as an ongoing process of grief and loss for family members. Many people coping with their parents’ early-onset disease are still in their 20s, she says, and they feel cheated out of the friendships that develop between parents and their adult children.

“We don’t have survivors,” said Ritchie. “The only people who bear witness to this disease are family members. It wreaks havoc on families. The toll it takes, I can’t even describe it.”

Lou Bordisso Jr.’s diagnosis presents a different kind of role reversal. His father is 97, and though Lou Sr.’s hearing is bad, his mind is still sharp. As Lou Sr. recovers in a rehab facility from a recent illness, his son came home to Sacramento from Vallejo earlier this year to care for him.

Instead, father and son share a caregiver.

Lou Jr. can’t drive any more, because he misjudges distances. His balance is off: Unless he uses a cane, he’s unsteady on his feet. Without help, he forgets how much medication he’s taken.

Since his diagnosis in May 2010, his life has changed enormously, downsized to a quieter, more manageable shape. He was bishop of his diocese for several years, but he took bishop emeritus status instead. The longtime marriage and family therapist also resigned from his secular job in forensic mental health with Contra Costa County.

“I was making mistakes,” he said.

He lives now in the Land Park house where he was raised. Being on familiar territory helps. Never married, he counts on his close-knit extended family for assistance.

Bordisso receives state disability insurance and has applied for early benefits from Social Security, which has added early-onset Alzheimer’s to its expedited access list of “compassionate allowance” conditions.

“I’m used to being a responsible person and doing my part,” said Bordisso. “Being on the receiving end of services is a difficult place to be. I’d like to be a productive member of society. I want to be able to contribute.”

Not long ago, he was named to the Alzheimer’s Association’s early stage advocacy committee, a national advisory board.

And he finds new, unexpected meaning in this unwanted stage of life.

“I can’t recapture the past,” he said. “I don’t remember it. The future, I have no idea what it holds.

“The gift of this disease is to live in the moment. Now is all I have. Literally.”

 

Taking It Out On the Lucky Ones

I don’t tend to get pissed off very often… you know, the kind of pissed-off-rage that suddenly comes over you like a blanket, only to have this urge to hit something (or someone). That feeling or moment came over me last Sunday………………………….

I took my mom to church and although I was prepared — she wore a diaper — we still had an accident. A messy one. She had made it to the toilet, wiped, pulled up her diaper, walked out of the stall……………. and then this this look came over her face…… that look that I’m sure most young kids give when they just realized they pooped their pants — so close, yet so far.

Mom sat back down and when she pulled down her diapers there was a little mess… OK, I’m OK… my “diaper” bag was in our pew so no spare diaper… let’s just clean it up and hope for the best………………… she had a better idea, she put her finger in it. Things spiraled from there in terms of poop-gate. I eventually got her mostly cleaned up….. I think some poop splattered on my foot and a little got stuck in the nail of my thumb. I will say that it took a lot of self control to not vomit……………….. vomiting crossed my mind. I just couldn’t wipe and puke. OK. Wipe, wipe, wipe and let’s roll! Things were cool. We were cool. She was cool. I was cool. We survived mass………………….. amazing.

And I was fine. A little frazzled, but cool………………………………

I texted my boyfriend at some point to tell him about what had happened. He replied with an upside down emoticon……….. I mean, truly, what do you say?

“sucks to b u. LOL…”

Not long after the emoticon text, he texted me to tell me that he had just had lunch with a friend at Paradise and they were hanging out by the pool.

I snapped on the inside. I was pissed. I was angry. I was mad because he was doing what I would like to do……………… have lunch with a friend and hang out. As fast as it came over me, it was gone……. I would never ask or expect my boyfriend to give up his Sundays so he could go to church with us… he does enough for my family……… nor would I ever ask him to stop telling me about his day………… like any good boyfriend, he was just giving me an update……………….. but there was this flash, this flash of anger……….. jealousy. I suppose we all feel that from time to time…….. envy ………………. because we aren’t like other people; we have responsibilities and obligations…………. you show up because that’s just what you do.

Taking your problems out on those closest to you is not uncommon….. some days, life just gets under your skin…….. I am at a point now where this disease is like a phantom limb…. I know the limb is gone, but sometimes I can feel it….. I know the disease is there, it doesn’t always affect me, but every now and then, it just pisses me off…………… that, and it’s too hot out……………… and the person who is at the receiving end of my crankiness is Jon. I know it’s not fair……………… I try to sequester myself when I’m in a funk, but sometimes, my funks can last for a couple of days………………… I just feel sorry for myself. I feel angry. Resentful, bitter and filled with contempt — especially towards those in my own family who I feel judge me and my dad………………… or judge the name of this blog.

Because that’s the real problem……………………… [insert sarcasm].

Jon is kind. He is compassionate and patient. He doesn’t get angry. He doesn’t lash out. He just waits for me to come out of the fog……………………………… to get over it.

Until the next time.

My latest funk has been a bit nasty………………………… just thinking about her, poop, life, its meaning, my purpose, my dad, his health, next steps with my mom….. do we put her in a home next year? When is the time right? What if we face a similar situation like last time? When will this end?

Overthinking is rarely good for the soul.

>>Flickr pic my one of my personal faves…. Meredith Farmer