From Salon.com… My Mom Has Alzheimer’s

My brother has been caring for her but I think it’s now my turn

By Cary Tennis

Dear Cary,

When my mom first was showing signs of dementia I was adamant that “something must be done” as I got married, started a new career, and quickly had two small children. Naturally, what I did was try to convince my mother to move into town, stop driving her car, and consider visiting a neurologist. My older brother, who lived much closer than my 1,500 plus miles, shrugged like it was no big deal. I should mention that both of us were still in our 30s, one of us (ahem, me) quite at the low end.

Fast-forward almost seven years and now my mother had moved in with my brother, only to move out and into assisted living in the same city where he resides. Not even in the same state where she lived prior to this upheaval, but very close and much more similar culturally, weather-wise, and a million other ways than my own state of California. Much. As my older brother goes through a divorce (no children) and continues on his path of creating, working, and great success, he has grown incredibly frustrated with the burden of caring for a parent with a very rare form of Alzheimer’s. While her facility does do a lot, she has always felt that family should do most of the caretaking and is constantly reaching out to my brother for help. For my part, I visit four times a year to help relieve the burden, and call often. In fact, my brother will tell me when he has a weekend he needs to focus and I’ll check in multiple times to make sure she does not disturb him. Still, it’s not even close to the job my brother has taken on at an early age.

Of course there is guilt. But there is also a determination to protect my own young family and fully commit to those other three people in my home. A gift I never received growing up. But at this point, when my brother gets irritated by every single small thing, I know he is done. Even if she were willing (which she told me once she was not, but hey, she has dementia), I cannot figure out if it’s a good idea to uproot my mother and move her closer to me and to her only grandchildren. My impulse is to do it so I can give her what my brother no longer can. At the same time, if I add caretaking my mother to my already overflowing plate, I worry so much about my children and my husband and my ability to care for them. Also, let’s be honest, I worry about my sanity.

What do I do? And how do I balance what’s best for me, with what’s best for my family living in my own home, and what’s best for the woman who raised me and gave me everything she had available? I mean, really.

Thank you for any insight.

Watching My Mom Forget Who She Is

****

Dear Watching My Mom Forget,

This is really sad and this is hard. I suggest you take what is the most manageable and equitable course. If that means moving your mother then move her. There is no perfect solution. So choose the one that is most workable and practical and fair.

This is unlike any other life challenge you have faced. If you are a competent and successful person then you are used to challenges for which there are solutions, in which victory is possible. This is different. There may be victorious moments but its nature is not the nature of a fair battle that might go either way, or a difficult problem that will eventually yield to intense study. This is decline.

Since you are in your 30s, you are attuned to the making of a family, the creating of new life, the upside of things. This is the downside, the ugly, untended, shady back of the hill where no one wants to live, where the sun doesn’t shine and nothing grows and you get an eerie feeling that makes you want to leave. That’s what it’ll be like sometimes if your experience is anything like mine. You love your mother and you want to do the right thing but no amount of preparation can remove the grim strangeness of it, and no matter how perfectly you execute your plan the result is not victory but loss.

You will get through it and there will be some moments of satisfaction and you may at times take some pleasure in seeing what great depths of resilience you have. But even that is a different kind of pleasure. It’s not a joyful look-at-me pleasure. It’s a quiet, well-I-got-through-that pleasure.

And you will get through it. I feel confident of that. You will be taxed to your limit and at times you may feel you are failing but you will get through this and in so doing you will confront certain limits that are not circumstantial and practical but something else, something psychological and spiritual.

Luckily there are resources to call upon and people to ask for help, wonderful people who’ve dedicated their lives to dealing with what happens when people begin to fall apart. You may have some wonderful experiences with them; you may even fall in love with a few, in the way that we fall in love with strangers who rescue us.

It’s going to be tough on you and your family, and all the while, the real drama will be hers: the subjective experience of memory falling away like a house coming to pieces around her. But you will get through it.

Have some hot cocoa. Pray.

From Salon.com

Flickr pic by Mamnaimie

New York Magazine… Mom, I Love You. I Also Wish You Were Dead. And I Expect You Do, Too

A MUST, MUST, MUST read that appeared in New York Magazine by Michael Wolff

On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I’d save if I bought it now, before the rates were set to precipitously rise. For $5,000 per year, I’d receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a day—a fair idea of where heath-care costs are going.

I am, as my insurance man pointed out, a “sweet spot” candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fifties—in my experience almost everybody—I have a parent in an advanced stage of terminal breakdown.

It’s what my peers talk about: our parents’ horror show. From the outside—at the office, restaurants, cocktail parties—we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.

I didn’t need to be schooled in the realities of long-term care: The costs for my mother, who is 86 and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I’m certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operators—and please fax them, don’t e-mail.) My three children deserve as much.

And yet, on the verge of writing the check (that is, the first LTC check), I backed up.

We make certain assumptions about the necessity of care. It’s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what’s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don’t doubt, will do the same.

And yet, I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it?

“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?” wailed a friend of mine with two long-ailing and yet tenacious in-laws.

In 1990, there were slightly more than 3 million Americans over the age of 85. Now there are almost 6 million. By 2050 there will be 19 million—approaching 5 percent of the population. There are various ways to look at this. If you are responsible for governmental budgets, it’s a knotty policy issue. If you are in marketing, it suggests new opportunities (and not just Depends). If you are my age, it seems amazingly optimistic. Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.

This is not anomalous; this is the norm.

The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.

Sometimes we comb my mother’s hair in silly dos, or photograph her in funny hats—a gallows but helpful humor: Contrary to the comedian’s maxim, comedy is easy, dying hard. Better plan on two years minimum, my insurance agent says, of this stub period of life—and possibly much more.

Mike Wallace, that indefatigable network newsman, died last month in a burst of stories about his accomplishments and character. I focused, though, on a lesser element in the Times’ obituary, that traditional wave-away line: “He had been ill for several years.”

“What does that mean?” I tweeted the young reporter whose byline was on the obit. Someone else responded that it meant Wallace was old. Duh! But then I was pointed to a Washington Post story mentioning dementia. The Times shortly provided an update: Wallace had had bypass surgery four years ago and had been at a facility in Connecticut ever since.

This is not just a drawn-out, stoic, and heroic long good-bye. This is human carnage. Seventy percent of those older than 80 have a chronic disability, according to one study; 53 percent in this group have at least one severe disability; and 36 percent have moderate to severe cognitive impairments; you definitely don’t want to know what’s considered to be a moderate impairment.

From a young and healthy perspective, we tend to look at dementia as merely ­Alzheimer’s—a cancerlike bullet, an unfortunate genetic fate, which, with luck, we’ll avoid. In fact, Alzheimer’s is just one form—not, as it happens, my mother’s—of the ­ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.

There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.

Speaking of price: This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.

Make no mistake, the purpose of long-term-care insurance is to help finance some of the greatest misery and suffering human beings have yet devised.

I hesitate to give my mother a personality here. It is the argument I have with myself everyday—she is not who she was; do not force her to endure because of what she once was. Do not sentimentalize. And yet … that’s the bind: She remains my mother.

Keep reading. Click here.

When There’s Nothing You Can Do… You Let Go

The running joke about me is that I see the glass as half empty………… The reason I choose to view most every situation from this angle is to avoid disappointment. It’s a method that’s served me well………….. especially when it comes to my family.

Of course, I would never describe myself as a pessimist. That’s just tragic.

I’m more of a realistic. Because the reality is…………………………

My mom is currently being “stabilized” with psychotropic drugs. After we were told that she had to leave her home, I begged my dream nursing home to consider accepting her…. they had a reputation for taking tough cases………if you’ve read this blog, you know my mother is challenging………………. dream nursing home decided to send out a nurse to further their evaluation. I was feeling optimistic. I thought, maybe this is an early birthday present……………………. Not five minutes after meeting my mother, the nurse told me that she needed to be in a lock down facility where she could be stabilized……… and they only way to get her to said facility would be to call 911.

Ten hours after 911 pulled up and carted my mom away, we found a bed at a unit that works to “stabilize” people like my mom.  That’s the thing with difficult dementia patients……….. most nursing homes won’t accept them if they are yellers (it disrupts other residents), combative (apparently, not an attractive quality) or aggressive (no one appreciates a black eye). My mother is a yeller. And she is quote-unquote combative. Not my word……………. and sorry, if a stranger were wiping your ass, I think you’d behave “combatively,” ………… as for the aggression part, well, it wasn’t her. Unfortunately, yelling has unintended consequences……………… like pissing off other dementia patients — a resident at the last home wanted to punch her to shut her up………… sigh.

Now here we are, waiting for her to “stabilize.”

And then we look for a permanent facility.

The more challenging dementia cases, usually end up at places that can deal with behaviors…………….. Unfortunately, there are very few “behavioral” facilities, and the ones that have a good reputation also have no beds. We are currently on a waiting list for one……………………

Think about that for a moment. My mom is on a waiting list for a bed at a facility that has limited space………… So, in order for a bed to open up, one of three things has to happen:

1. Someone has to be cured of dementia.

2. Someone has to be transfered to another facility.

3. Someone has to die.

We are waiting for someone to die. Preferably a female.

Glass nearly empty.

That’s our reality.

Dementia is a grotesque disease. And when you peel back every grotesque layer, what’s left is a putrid, rotten pit……………. or, reality.

The reality is, I have very few choices.

The reality is, there is very little-to-nothing I can do.

The reality is, I cannot save my mom.

The reality is, I have done everything I can do.

The reality is, I have to let her go.

The reality is, I have lost.

The reality is, I am accepting all of the above.**

** Somedays, reality is a tougher pill to swallow than others.

Nothing has ever been easy about this disease, her disease………………. the price we’ve paid as a family, well, there’s no coming back from it. In many ways, I’ve lost both parents………….. one to the disease; the other to her disease. Her disease has made us more grotesque…………………. her demise is a staggering loss, heartbreaking, devastating. When I sit back and think about what the disease has done, where it has taken us, how its nefarious tentacles has slowly suffocated us……………….it’s still suffocating us……………. it’s a curious thing how something can infiltrate and devastate the family unit to the point where there is no point, no coming back.

No happy ending.

Grieving for the living is a strange thing……………… Closure comes in the form of accepting what is…………….. I think.

I don’t really know.

>>Flickr pic by Meredith Farmer

Interview on Lori La Bey’s Radio Show

My mom

A huge thank you to Lori La Bey of Alzheimer’s Speaks for having me on the show last Friday along with Lisa Genova, author of The New York Times best-selling book, Still Alice. This was my first radio interview and I was absolutely thrilled to share airtime with Lori and Lisa.

You can check out the interview here… I came on after Lisa — WOW!

Thanks!

A Man Walked Into a Bar With Adult Diapers On……..

I’ve been hearing a lot of adult diaper jokes lately………………… I don’t know if that’s just how the universe works because the universe, in all of its infinite wisdom, is actually a really big dick……………………………. or I just happen to be more in tune with adult diapers since I buy them often.

I don’t find adult diaper jokes very funny…………………… when they do come up, I fake-laugh and hope the subject is changed. Promptly………………… Look, I try to have a good sense of humor about my mom and her disease (my new joke is that trying to get her this really good nursing home is like trying to get a kid into private school……………….. OK, it’s funnier when I say it and you see my face), but adult diapers, well, let’s face it, of all of the humiliations we humans have to endure as we get older, sitting in a mushy pile of your own caca, waiting for a stranger to change you is surely at the top of the list.

Alas, most people don’t really think the adult diaper thing through…………. for some weird reason, they associate adult diapers with pee — just PEE………………….. because somehow you’ll be able to get yourself to the toilet to poop??????

The other night, we were at a favorite restaurant having a bite to eat and a glass of vino………………………………. the owner of the restaurant (we’re chums) came by the bar to say hello……………………. the conversation (I had NOTHING to do with this) turned to aging, retirement, getting older and, naturally, adult diapers (the universe laughs)………………….. the owner said that he’s already told his family that he doesn’t want to go to a nursing home and that he wants his family to change him if it ever gets to that point where he develops, you know, The Alzheimer’s, and has to wear adult diapers………………………….. he doesn’t want complete strangers cleaning up his mess………………………….that should he ever become difficult, he’d be OK with his family smacking him and putting him in a corner………………………………

I smiled.

Fake laugh.

Jon turned to look at me.

I think he wants to make sure I’m not twitching……………. or seething with rage.

Think Pulp Fiction.

“Bitch, be cool.”

I didn’t want to tell him that my mom was being cared for by strangers. That my mom is in adult diapers and it’s not easy to change out your own parent’s poopy diapers. That you can’t just slap your parent when they act out…………… that most dementia patients don’t just sit there quietly (I wish!)………….. that most families, after a point, cannot take care of their loved one………………….. that asking your daughters and wife to do this for you is like asking them to take give up a limb…………………. that your daughters that you worked so hard for will have to make huge sacrifices to care for you and your poopy diapers…………………………..

Getting old is a scary prospect. I think about it a lot. I think about how I’m going to pay for my own care and I’m 34. The majority of us avoid the topic all together, or we simply hope our kids will be there to pick up the dirty work of caregiving…………………….. clearly. I don’t have kids. And if I did, I wouldn’t bank on having kids who would step in and make certain sacrifices on my behalf…………. nor would I want my child to change out my diaper…………………… I often wonder if I would be able to do it……………………. to call it a day if I knew that my days were only going to get worse. I can’t help but wonder if there is a God that would punish me by turning me into a roach in my next life………………. or condemn me to an eternity in Hell…………my good deeds on Earth erased because I boldly ended my own life so I would not have to suffer a fate like my mother’s.

We left the restaurant and I didn’t say a word. I think I was too cold to care. “Turn up the heat, it’s freezing!” I let that entire conversation slide off my back.

Do I think that man is selfish. Yes. Do I like his white beans and escarole? Yes.

That’s life. People make adult diaper jokes and they don’t think about what it means to wear an adult diaper………………… but then again, if we all fretted about our destinies, what would be the point of life?

I can’t help but fret. For the last 7 years, her disease has been my life. I can’t help but think about my own future, my fate…………….. is it hereditary? Will I get this too?

Life is a toss-up.

Sometimes you get a really shitty hand.

>>Flickr pic by the tremendously talented Meredith Farmer

And Then The Other Shoe Dropped

My grandpa passed away over a week ago. This, following everything with my mom…………………….. he was 94. We knew his life was coming to an end, but to have it happen so soon after we placed my mom, and in a way lost my mom…………………. I know my mom is in a much better environment, a place where she can be properly taken care of by people who are trained to deal with people like her………………… people who don’t wretch when they smell poop; timing-wise, well, her placement was a blessing because my father and I could attend grandpa’s (his dad’s) memorial service in Minnesota.

There’s no way we could both go and say goodbye if she were still at home……………..

It’s this kind of outcome or timing in life that makes me wonder if there is a God, because clearly he tossed me a most-fucked-up bone, but a bone none-the-less.

Still, the last few weeks have left me feeling, I don’t know, quiet.

And sometimes stingingly agitated.

There’s a part of me that’s incredibly paranoid about what’s next — what could possibly happen next? Will it be me? Will something happen to me? I worry about my health.

But then, I try to calm my mind. To breathe, which is actually a very difficult task.

What transpired over the past few weeks is simply a part of life………………… my life. And everything with my mom has led me to this point where I should be able to cope with her placement. To walk away when she screams, DESPIERTA AMERICA! because she wants to follow me out the door.

The thing is, something is troubling me and I can’t put my finger on it……………. there’s something off, something that leaves me feeling disconcerted.

My emotional compass feels out of whack.

I try to remind myself that the life I live is better than lives led by 90% of the people on this planet. It’s a unfair comparison to make, because I will always lose — someone is suffering more than I could ever imagine, but still………………….. humans can cope and deal with a lot. That’s how we were designed.

At least that’s what I think.

Perhaps we can ingest a lot of shit, but sometimes it takes a while to digest it…………..

I guess that’s where I’m at.

Digesting everything that has transpired over the last few weeks………………

Two different passings.

 

>>Flickr pic by Meredith Farmer

I Look Like Her

I do not look like my mother.

But ask anyone else and they would disagree with me. Oh my God! You look exactly like her, they say…. I’ve tried, but I have never seen my mother in the mirror……………….. And I have many mirrors. Truthfully, I’ve always fancied myself my father’s daughter……………… both in appearance and overall disposition. However, in recent years, I’ve come to the conclusion that as far as disposition is concerned, I am neither parent.

I march to the beat of my own drummer………….. my temper is neither his nor his, maybe a blend of the two…………….. My coping mechanisms are much different. My approach to problems, vastly different. My view of the world…………….. different.

My sense of humor is neither his nor his……………. In fact, as sad is this may sound, I don’t recall either parent ever making me laugh out loud. I don’t remember much joking going on at all in our house. That might explain why I overcompensate in the humor department………………. I like to laugh, and I have a pretty loud laugh.

Just ask anyone who knows me.

Physically, I always thought I was my father. Big lips, brown hair……………….. wide feet.

It actually bothers me when people remind me that I look like my mom. I have no idea why, I almost find it irksome………….. I don’t look like her, I think to myself when people make the comparison…………… I can’t really explain where this contempt stems from, except to say that I’ve sort of always viewed my mother as weak. Fragile. Never one to take risks or follow her heart. Never one to pursue her dreams. She is dying now and I know that she never accomplished one of her goals……………………… She would always say, “I should have gotten my degree, so I could teach Spanish…” or “If I had started working on my degree when we lived in Iowa, I’d be done with it by now…” My mom had earned her college degree……………….. in Ecuador. She needed to take more classes in order to teach here in the U.S. She never realized that dream. I suppose there was always something…………………. isn’t that how life operates? There’s always something to keep you from doing what you want to do……………………. Instead of going to college, she taught privately at night to school teachers here in Phoenix who needed to learn Spanish and worked as a school secretary. I don’t think she was especially happy about her lot — she always seemed anxious or nervous; she was a hypochondriac. There was always something when it came to her health…………. maybe she knew all along that something was wrong……………….. nobody would have figured out, not until she was too far along to do anything (if anything were an option) about it.

I don’t know what my mother was like before she met my dad……………………. I have a photograph of her from when she lived in Louisiana (was she this world traveller? Is that where my itch to see the world came from?) and on the back she had written a note professing her love………………….. to another man. After living in Louisiana, she moved to New York City (like mother, like daughter I suppose) where she worked as a secretary. I have no idea why she went to Gotham………… all I know is that she lived in Corona………… a neighborhood in Queens that is still popular with the Ecuadorians. Someone in Corona probably knew my mother……………. what she was like, what she aspired to do and be………………….. my mother’s past is shrouded in mystery. I don’t even think my own dad knows that much about it……………………

I suppose it is because I don’t know her………… I don’t see the resemblance. We’ve always been different she and I…………… I often wondered if she thought she had done something wrong in raising me………………… why is she like that? 

It doesn’t matter because it doesn’t anymore.