Eat up

My grandfather has always had a healthy appetite.  He used to be the dumping grounds for others' unwanted leftovers at the dinner table.  He would eat a handful of grandma's homemade cookies before dinner and still have seconds.  One of granddad's lifelong quirks is that he puts salt and pepper on everything (unless it's sweet, and then he'll put more sugar on it).  If you served him a salt and pepper sandwich, he would put more salt and pepper on it.  He wasn't overweight - ever - he just had a fast metabolism and a taste for everything (except mushrooms, mayo, and anything green).

For the first few days in the rehab, granddad would sleep through meals.  We could maybe rouse him for a few minutes - enough to get a bite or two down - but then he would fall right back to sleep.  I still felt accomplished when I would get him to chomp down on some chicken or scrambled eggs, firmly believing that if he could just keep his appetite and get some nourishment that he'll continue to heal.  But now he's awake, alert, and pretty disinterested in food.

It's lunchtime now.  Today they brought in some baked chicken, stuffing, potatoes, and lemon meringue pie - a tailor made meal for my grandfather.  But instead of eating it, he stared at it for a while, dozed off, woke up, tried to dump the plate on the floor, tore up his napkin, and played with the sugar packet for a few minutes.  The nurses want to know if we should put him on a soft-foods diet.  But the problem isn't that he can't chew and swallow the food.  It's that he's too confused to put it in his mouth in the first place.

Yesterday he took his bottom dentures out and used them to push food around on his plate.  The other day I tried to give him unshelled pistachios (his favorite), but he would spit them out after rolling them around in his mouth for a few minutes. He also took a cup full of water and threw it across the room.  Not aggressively, just like someone who might be trying to toss a crumpled up piece of paper in a garbage can.  The water spilled ALL over the floor, and granddad's response was "I almost made it."

(On a completely selfish note, I haven't eaten a real meal in over a week.  Between an hour roundtrip travel to and from the rehab each day (sometimes more than once a day), my sometimes 12 hours shifts on granddad-duty, sleep, and occasionally work, I haven't had any time to shop or cook.  Today for breakfast I grabbed a breakfast sandwich from Wawa.  For lunch I had a packet of cheese and crackers I (also) bought at Wawa.  I've eaten at least a dozen Cliff Bars in the last week, and last night we had Chinese delivery.  There isn't any refrigeration at the rehab, or microwave to heat anything, so until I have a chance to go buy and prepare healthy food that I can keep at room temperature, I'm going to keep eating like a landfill for a few more days.)

How do you feed a person who won't eat?  It's not that they CAN'T eat, they just lack the neurological impulse to put food in their mouth and chew it as a means to stay alive.  The nurse said she'd have someone come in and help him with his dinner, but I just don't see that going well either.

If it wasn't so sad, it would be funny

Ask anyone whose ever been to college and they'll have one or two stories to share about dealing with a roommate (someday I'll tell you a story that involves a super conservative Christian, a lesbian, and a trashy romance novel).  Roommate assignments are like a box of chocolates.  And until college freshmen start developing problems with incontinence, verbal ticks, and old-man smell, then you haven't experienced the excitement of having a roommate at a long-term care facility.

Granddad's roommate (let's call him "Bob" to protect the innocent) has been here a while.  From what I've gathered he's been in and out of this rehab a few times.  The gaunt, barely-there man in the bed next to granddad looks much different than the plump man in the photos by his bedside.  Now, he doesn't seem like a danger to himself so he doesn't have round the clock care (unlike my grandfather), but in all the time I've been here I've only seen him have two visitors.  So there is a part of me that feels very empathetic to this stranger, a part that wishes I could pull the curtain aside between their two halves of the room and be a companion to both men.

But Bob is a racist.  Or - at the very least - the part of his brain that filters out the "N" word from common vocabulary is gone.  In the 60+ hours I've been in this room, I think he's used MAYBE a dozen words that you wouldn't expect to see scrawled on the bathroom wall in a KKK men's room.  It's especially upsetting when one of the non-white nurses aides try to help him out of his wheelchair, or change his diaper.  You'd think if you were getting paid $20K a year to clean up shit, you wouldn't also have to deal with your patients screaming four-letter words and racial slurs at you while you did it.  I don't know if he has age-onset coprolalia or if he's just a tired, worn down bigot, but it's very unsettling to have to calm your grandfather back down to sleep while someone is rolling around his room yelling "Go f#$% a monkey" or "Son of a b#tch" or "G*ddamn c#$%sucker" (among others).

Bob has other less-than-pleasant quirks as well.  He only eats Tastykake Kandy Kakes (literally, that's all I've seen him eat) and he leaves them half chewed lying around the room.  And he spits.  Like, SPITS.  On the ground, on the furniture... so far luckily not on me, but it's only been a week.  And while I wish Bob could be moved to a different room, who knows what kind of roommate granddad would get then.  The devil you know.

Good luck getting old

Do you have a retirement fund?  401k? IRA? Long-term care insurance? A goose that lays golden eggs?  If not - and I mean this in the nicest way possible - just kill yourself now, before you get old, or else condemn yourself and your family to years of financial hardship.

(Sidebar: I love my grandfather.  In fact I love my whole family, as evidenced hopefully by my commitment to helping my grandfather heal.  But this blog is meant to be therapeutic for me and full of uncensored honesty.  So please take everything here with the understanding that - bitch and complain though I might - I would take a bullet for my family.)

So where were we?  Right... kill yourself.  My father's favorite line is "Just put me in the woods with the wolves."  His wishes are that I just drop him in the middle of the wilderness when he gets to be too feeble to take care of himself.  Eventually the wild animals (sometimes it's wolves, sometimes bears) will come for him and he will succumb, a beautiful act of the natural order, and perish in the jaws of a large predator.  That's not a joke - that's what he wants.  My father is very dramatic.

You may be asking yourself why on earth I would have to sit at my grandfather's hospital bed for 60 hours a week.  To answer that, here's a math problem:

Mike has $1000.  His health insurance costs $500 a week.  There are 168 hours in a week.  Mike needs 24/7 personal care, which costs $20 per hour.  How many hours of personal care can Mike afford?  

The answer is 25.  So out of 168 hours in a week, my family can afford to hire someone to watch over him for 25 hours.  Which leaves us to split up the remaining 143 hours.  And before you ask - the answer is "yes".  Yes, he needs someone with him 24/7.  One of the symptoms of his dementia is confusion, and he has no idea that he's on bedrest.  At 10AM you can remind him that he has a hip fracture and is on bedrest.  At 10:05, he will try to get out of bed to go to the bathroom.  At 10:30 he'll tell you that he has to get dressed for work.  At 10:45 he'll try to get up to go pay for his newspaper.  By 11AM he'll be fast asleep, only to play out the same scenario when he wakes up at noon.  

Hospital and rehab facilities are great, but they can't provide the level of care that my grandfather needs.  The bed alarms that let the nurses know he's up only go off AFTER a person's off the bed (at which point he'd already have put weight on his leg and probably collapsed to the floor).  And it is illegal to strap a patient to their bed, even if it would absolutely do more good than harm.

So that leaves us with one option - 24-hour a day care, however we can swing it.  As a former stage manager, I am very adept at making schedules.  So I have taken on the responsibility of "assigning" shifts to my family members.  Dad gets 2am-7:30.  I get 7:30am-6pm.  Mom takes over from 6pm-10pm.  Then we have an elder care company come in from 10-2.  Since I run my own business, I have the most "flexibility" with my schedule.  But there are days when I have to, y'know, work or take meetings with clients.  So then we have to pay someone else to watch granddad.  So depending on how busy of a week I have, that chews up most of my 25 hour buffer meaning that I get to pull the overnight shift sometimes to make up for it.  Let's just say that it's been a long week.  And if the doctor's right, we've got another 7 weeks - or 1176 hours - to go.

Hello, Goodbye

It's 3AM, I must be lonely

Why? Because... dementia.

Why did granddad throw a cup of water across the room? Why did he ask me for scissors so he could cut open his shoes? Why did he attempt to carry on a full conversation with me - his granddaughter - while masturbating in the middle of the living room? The answer is really quite simple.

At the time of this writing, my 92 year old grandfather is sleeping across the room from me. It is pushing 1AM and my watch won't be over for another 2 hours. In the last week I've logged 60 hours at the foot of his bed, tasked with one simple charge: Keep granddad in bed. We are camped out at this "Transitional Care Facility" for the foreseeable future, a result of one fracture in his pelvis and another in his hip. At 92, granddad is not a candidate for surgery, so he was prescribed this 2 month sentence - Don't put weight on your left leg or you are likely to snap that hip bone right off. And THAT will land you on bedrest for the rest of your life.

Now, if you told me to stay in bed for 2 months, I'd be pretty pissed but I would do as I was told. Unfortunately for my grandfather, myself, and my immediate family, my grandfather is no longer capable of following simple instructions. And so here we are - my grandfather/patient asleep in a hospital bed while I sit and type my story.

I honestly wasn't sure if I wanted to publish this story in any public forum. After all, this isn't fiction and I have witnessed my grandfather masturbating. More than a few times. My family is very sensitive to wanting Granddad to maintain his dignity, but I also need to maintain my sanity.  I am acutely aware of the loneliness I am feeling - and not just because I'm sitting in a room with 2 sleeping nonagenarians (granddad has a roommate). Taking care of an elderly family member with dementia is very isolating. As hard as it is on me, it's doubly hard on my mother. And while she is the single most empathetic person I know, I sometimes feel like unloading any of my dissatisfaction with the situation is only burdening her more. My father is in the same boat - he's been at the foot of this bed every morning this week from 2AM until he leaves for a full day of work. My husband is a trooper to be sure, and he's done his fair share to help take care of my grandfather over the last few years, but he's currently at home sleeping off a fever (because these things never happen one at a time - life likes to hit hard and all at once). And my friends, while wonderful and always supportive, are busy living their own lives. When someone politely asks you how you are - expecting a "Great!" or at the very least "Ok" - you hate to be the girl who says "Actually, things are pretty terrible at the moment." So you keep all those unpopular thoughts to yourself, only resulting in more and more isolation.

So here I go, blabbing to no one in particular, in the hopes that the simple act of writing about this experience will make it more bearable. And for a loftier goal, perhaps another soul will stumble across this story and feel a little less lonely in their experience, too.