Friday, August 21, 2015

My 36 Hour Day - Or "Why I Can't Get Shit Done"



I was having a conversation with a friend recently and was lamenting the fact that I just don’t seem to ever get anything accomplished on my “to do” list.  It seems I’m busy all the time and constantly on the move, but nothing is getting done. 

Now, this friend knows my situation.  She knows I have an 87 year old Alzheimer’s toddler to deal with, a 16 year old dog that was NEVER trained to do anything but yip and whine, two grown cats who are relatively care free, and one new kitten with special needs.  Oh, and I work full time and just picked up a second job doing some work from home. 

So, really, this friend just looks at me and says, “you seemed to have a good schedule going, doesn’t that help?”  To which I reply, “you’d think, but for some reason, no.” 


The Alzheimer’s Association passes out a book to those of us in their support groups called The 36 Hour Day.  Basically, it describes what it’s like to live with someone who has Alzheimer’s and being their caregiver.  It offers advice, some hints at the obstacles we’re likely to encounter and basically the tagline should read: “Buck up, you’re not alone and this too shall pass. Meanwhile expect to deal with all this crap you before it does.”



My response to that: I’m tired of bucking up; basically, no I AM alone; and I’m really not sure if it will pass before it kills me.  Meanwhile, yes, I’m dealing with all this crap.

Yesterday I decided to really pay attention to my day to see why I wasn’t getting anything done and so, here’s what I found: For people in this situation, we do indeed need 36 hours in our day.  We worry about not only ourselves, but about the safety of the person we're caring for, maybe their finances, maybe an illness. 

Eats what he wants ONLY.

We cook for them if they will eat and worry if they won't and then make special arrangements so they will eat again.  We clean them and the messes they make over and over and over again, because that's just the way life is.  We pars out our own lives in increments of whatever amounts of time we can leave them either unattended or find someone who will stay with them while we're not there, but while we're gone we worry that we need to be at home.  Plus, unlike those caring for children, we don't have the future to look forward to - these people aren't going to get smarter, better, know who we are, or how to deal with their own shit ever.  It's all downhill from here and we're on a fast jog trying to stay one step in front of it.

So, here's my typical day...let's try to see where I loose out on those extra 12 hours.

Up at 6:15 in a panic because I’m worried about Dad’s finances.  IRA distributions are due but Dad steals the mail most days before I get home, so if there was a check in there it could be trash by now or hidden away in one of his drawers (last week I found my paycheck stuffed in the back of his closet underneath some old pillows).  This gives me nightmares and some mornings I wake up in a panic that I’m missing something or have lost track of something important.

Purr-fect for Meditation
Being awake now means the cats have noticed me jumping out of bed yelling “Oh God!” because I’m in a panic.  Cats now want attention, so I get back into bed for a few minutes to get some good purring to settle my nerves.

6:30 Alarm goes off, officially time to get up.  Kitten still cuddled on my neck so I give him an extra 2 minutes.  Big cats know it’s almost breakfast time so they wander downstairs.

Dad must have already been awake because now he’s in the bathroom.  (Disclosure: old men are gross.  Especially old men with Alzheimer’s.)  Pee is everywhere in the bathroom.  Poop is wiped on most surfaces within arms reach of the toilet.  Because of this, first task of the morning is to wipe down the toilet and surrounding surfaces with bleach wipes so that it’s usable to the other person in the house…me.

Dad heads downstairs to forage for cookies so I take a minute to look in his room for the missing wash cloths.  I usually keep mine in my room because he steals every single wash cloth and towel from the bathrooms every single day.  I don’t know why, but that’s how it is.  Last night I forgot to bring in my wash cloth so now it’s missing and I go looking for it.  Find a dozen cloths in his room, put them all in the laundry and get a clean one out of the closet for me.

Get into the shower. Dad makes his way back upstairs and I guess he can’t hear the shower because he barges in again wanting to use the toilet.  I chase him out so I can finish my shower and quickly decide that’s probably not the best idea.  I turn off the water, put a towel around me and rush out to find him standing in the back room getting ready to pee on the floor in the corner. (note to self, that was probably not rain I found there the other day after the storm.)  Get Dad back into the bathroom to pee while I stand outside in dripping wet hair waiting for him to finish.  And waiting. And waiting.  Oh, did I mention, he’s not only gross, but he’s really, really slow.

Dad back in his room, me back in my shower and back on track.  Only running 10 minutes behind schedule so far.

Due to all the commotion, the dog is now awake and prancing around because she has to pee too.  Throw on a robe, rush downstairs to let the dog outside but cannot find her leash because Dad’s “put it away” again somewhere only he knows about.  So out the dog goes and she runs off down the driveway barking.  I’m not dressed to chase her so I hope she gets run over by the garbage truck.

My floors after the cookie handler
Back upstairs and into my room to get dressed for the day to find Dad in my room making my bed.  For him, that means, taking all the pillows and putting them in the closet and when he’s done doing that he usually steals anything on my nightstand that looks shiny, like my reading glasses, nail clippers, iPhone, TV remote, etc.  So I have him empty his pockets so I can retrieve my glasses and send him out of my room so I can get dressed.  And let’s note here that one hand is holding a squished up cookie, so as he’s doing all of this he’s scattering cookie crumbs all over the room.

Finally I’m dressed and ready to head back downstairs where I hear the dog barking to be let back in. I remember to close and lock my bedroom door to keep Dad from “making” the bed anymore today.  Or peeing in my trash can.  Or stealing the cookies I have stashed in my nightstand.  Or taking the jewelry out of my jewelry box (he’s been wearing my old wedding ring now for about 4 months, go figure).

Dad’s been down to the kitchen multiple times overnight so there are cups on the sink where he’s been getting something to drink (a fresh one each time it appears), water dripping from the counter because he doesn’t get the concept of emptying the cup before turning it upside down on the counter, cookie crumbs are all over the counters and floor, the dog leash is stuffed inside one of the cups and there is pee all over the downstairs toilet.  Not the worst morning, but still not good.  *More later on other stuff that makes me scratch my noggin.

FEED US!
Anyway…first things first, feed the crying cats.  Then let the dog back in.  Wipe down the toilet with bleach and wash my hands hoping I don’t stink like pee when I get to work.  Clean off the counters and floor of cookie crumbs, wash out the cookie/snack container and put in more for this morning’s foraging efforts while I’m gone.  Double check to make sure whatever he’s being fed for lunch is ready for Joyce to give him.  Pick up my own lunch if I had time to make one last night, pack my lunch bag.  Remember to put the bedroom key on its hook because so far Dad hasn’t figured out where it’s at.  Check to make sure there isn’t any food left out that he can make a mess with and then…

It’s 7:20, time to head out for work.

What follows is almost 9 hours of blissful not-at-home-ness.

Then I get to come home from a good day at the office to do some more fun stuff.  Let's see if I can figure out yet why I'm not getting all that other "stuff" done that I want to get done.

Tonight Dad's dinner is pancakes and I'm eating an ear of corn and some tomatoes.  Ready?  Get set!  Let's go!

Discovered I was out of pancake mix so stopped to make a big batch of mix before I could make dinner for Dad. 

Dinner finally fixed, 6 additional batches of mix put in freezer for future use.  Here's a link to my favorite pancake mix recipe.  Thank you King Arthur Flour!

Discovered Dad has shut the basement door (again) locking the kitten away from his litter box.  Kitten forced to poop on my carpets after finally learning last week that his box is in the basement.  Kitten poop, but the way, is a lot like baby poop.  Stinky and messy.  Picked up the messy parts, note to self to clean carpet tonight sometime.

Chopped Corn Salad!
Since I’m cooking corn anyway, I decide to fix all 4 ears and make a corn salad for the weekend.  While the corn is
cooking, begin chopping garlic, tomatoes, radishes, onion, peppers, cilantro, etc.  And while I’m at it, once the corn is off the cobs, boil them to make corn stock for the freezer for later corn chowder making time.

Coax Dad downstairs for dinner.  Finally on his third trip down the steps, I corral him outside to the table to eat. (It’s well noted that when I call him, or go get him for dinner out of his sitting room on the second floor, he might make his way downstairs but forgets why he’s there, so invariable he makes several trips up and down the steps before I finally grab him to come to the table.  Such is the life of a person with no memory.)

Sit down for 5 minutes to eat.  Dad’s finished first so before he runs back upstairs out of my grasp, I shove him into the bathroom for his shower.

Shower night for Dad again.  45 minutes of struggling to get him undressed, showered, shaved and into clean clothes and back upstairs out of my way.  I realize I forgot to get his clean clothes from his bedroom upstairs, so while he’s in the shower, I run up to get them before he comes out of the shower and walks out wearing nothing but his shoes.  Yes, I speak from experience.

And while I was upstairs grabbing his clothes, I notice something missing from his bed...all the sheets are gone.  Not much time to scratch my head over this one just now, but a quick search around the room fails to reveal where he might have hidden them.  We'll never know WHY they're missing, just that they are.  One more thing to chalk up to Alzheimer's.  Quick, get back downstairs before he's finished in the shower.  Worry about missing sheets another time.

Thankfully, Dad is still pretty good at dressing himself after a shower.  As long as it's staged properly, he usually comes out fully clothed.  Most days his shirt is on right side around and sometimes I'll find his clean underwear stuffed on the towel rack, but there's no shame in that I suppose.  I know that won't always be the case, but for today, he looks like he's all dressed so I shoo him back upstairs.  Where he will promptly go to bed in a bed with no sheets.  Oh well. I'm choosing to ignore that battle for today.

Wash the dinner dishes.

After deciding to make the corn salad I discovered I didn’t have any black beans, so a trip to the store was made to buy beans.  While out, got gas for the car and took the dog to the park to run for a few minutes.

Forgot about the corn salad dressing.  Get out limes, squeeze limes, make dressing.  YUM!  Best part of the whole night!

While chopping stuff for the corn salad, might as well clean out the refrigerator to find all the rest of the stuff I need.  Discovered spilled something all over bottom shelf so had to clear out said shelves and wash down completely.

Since Dad was done in the bathroom, clean the shower and sink and scrub down the toilet AGAIN.  Clean out his razor.  Shower water all over everything so, hang rugs, towels outside to dry and mop up the floor.

Cats hungry – feed cats (easiest task of the night)


Dog wants out.  She runs off again out of the yard because Dad has once again hidden her leash and I cannot find it.  When I finally find it, it’s knotted up so much I cannot undo it, get frustrated with it, throw it in a heap on the floor and hope the dog gets run over by a car.

Corn salad a complete success but it’s made an overwhelming amount.  Text to friends to see if they want some.  Put into travel containers for pick up.

While clearing out the fridge, discovered two melon halves stuffed in the back.  Still good.  Seed,
peel and cube melons.  Add the bit of pineapple also discovered stuffed in the back.  Take out trash.

Freezer - a little too well stocked.
Oh, buy the way, the corn stock is ready for the freezer.  Locate containers with matching lids, and try to fit in freezer.  Freezer full.  Now spend 20 minutes clearing out the freezer to make way for the corn stock.

It's getting late, nearly 9pm and I'm still in the kitchen.

Wash salad making dishes, containers emptied from fridge during clean out, wash the cat dishes.

The dog is finally back home and hungry.  Rummage in fridge for rotisserie chicken, chop up and give to dog.  She turns her nose and walks away, the kitten gobbles it down.  Dog still hungry.  Kitten over full and pukes up chicken all over carpet.  Note to self, clean this spot too when cleaning the poop spot.

Snack Box
I’m tired.  Before heading to bed, must put out snacks for night-walking Dad who will be tearing up the kitchen foraging for food if nothing is left in his reach.  Wash his snack box, find fresh snacks and put up for him to “find”.

 While cleaning out the fridge, chopping up vegetables and peeling melons, etc, I managed to track old food stuff all over the kitchen floor making a total mess.  So final act of the night, mop the floors.

4 hours after pulling in the driveway from work, my day is about complete.  By the time this was all over I was too exhausted to sit at the computer or start to paint the kitchen or mow the yard or weed the garden or talk to friends.  Every night seems to go exactly the same.  Plus, because I didn’t get it done last night when it happened, I still have to clean the cat poop off the carpets tonight. 

10pm and I'm finally drudging myself up to bed.  Lucky me, all this time Dad's been in bed and now for him, it's time to get up.  While I wash my face and get ready for bed, he gets up, "makes" what's left of his own bed and starts wandering the house turning lights on and off, looking for food and the dog.  That usually means that at least once or twice a night he barges into my room, flicks on the lights and yells "Susie" (that's the dog).  So tired or exhausted or whatever I may be, doesn't matter, when he's up, there isn't a full night's sleep in the forecast.

So there we have a wrap.  My 36-hour Day.  


Monday, April 20, 2015

WARNING...CONFUSION AHEAD

Let's talk about another of the signposts of Alzheimer's.  I've already written about a couple, and here's another one that I totally missed with my own parents.  My goal here is to help educate others who may be wondering what to look for in their own loved ones.  I hope that these signs aren't in your future, but please do yourself and your family a favor and keep your eyes open and be proactive should you think signs are developing in your loved ones.
 
Here's what the Alzheimer's Association says about this warning sign:  Confusion with time or place     
People with Alzheimer's can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.

IS IT SUNDAY ALREADY?

One of the signs of my parents developing Alzheimer's that I didn't take into account was their growing difficulty with keeping appointments. Mom and Dad weren't really social people and never went to the doctors, so there weren't a lot of things to keep track of in their daily lives.  Maybe it's more obvious in a family who have lots of doctors appointments, family gatherings, social activities, etc.

What I did begin to notice first over the years was their getting ready to go somewhere really early.  I mean REALLY early.  When I'd visit and they would pick me up at the airport, I'd discover that they had been in the lobby for well over an hour waiting for my plane to arrive on time.  When it came time to take me back to the airport, they were taking me earlier and earlier so that I had up to a couple hours wait for my flight.

At the time, I took it as them being either excited to see me (yeah!) or excited to get rid of me (not so yeah!).  However, looking back and talking with friends, there was a pattern of them being out of whack with the day and time.
Wish I'd had one of these for Mom and Dad!

In their later years, they developed a habit of attending church services on Sundays.  Mom enjoyed the fellowship and I think Dad found it comforting to some degree.  In the year or so prior to the "big Alzheimer's reveal", I'd be talking with them on the phone and ask about church and there would be some funny story about them getting ready and going on a wrong day of the week, or if it was on a Sunday that I spoke with them, Mom would say, "Oh gosh, is it really Sunday already? Well, I guess we missed it."

Birthdays rolled around without notice.  For the final two years they lived alone, I sent them handmade calendars for their wall noting all family birthdays.  The first calendar I sent, when I visited them I could see them crossing out the days as they passed.  Then, in subsequent visits, the crossing out stopped and finally, the calendar would be a month or two off.

EXCUSES MADE FOR THEM
I always put this confusion down to their being retired.  It was easy enough for me to loose track of days, and I worked for a living!  I just figured it was typical once someone was out of the "rat race" to not care what the day was or to take their time doing what few things they actually had to do.

WHERE ARE WE ANYHOW?
I have to say that my parents showing a distinct lack of awareness of their global position wouldn't have led me to think anything was terribly out of whack.  Frankly, they moved like Gypsy's from Ohio to Florida more often than the average two people.  After my Dad's retirement at age 55, they moved between the two states 25 times.  Yes, I said 25 times.  And only about 6 of those were as what you'd call a 'snowbird', meaning having two homes, one in Ohio and one in Florida.  

My Father's hatred of all things snow related sent them scrambling to Florida over and over again.  His indecision about where to land sent them from the East Coast to the Gulf Coast multiple times.  

Mom's longing to be near family would drag Dad back to Ohio, if only for a brief amount of time, buying and selling houses like they lived on a Monopoly board.

Given that history, their lack of awareness of where they were, or are, is sort of understandable.  Of course, the lack of logic in the multiplicity of moving should have been a big tip-off about my Father's general mental health.  I imagine now that he's been showing signs of early dementia long before Mom ever did.

But, all that being said, once the disease began to take hold of them, they would talk about their location as being Ohio or Florida interchangeably.  Not knowing seasons would also be normal under these circumstances, but towards the end, I realized that they didn't understand when I'd talk to them about snow on the ground here in Ohio because they'd forget it was winter. 

SO, WHAT IF YOU NOTICE THESE THINGS IN YOUR LOVED ONES?
First of all, don't do what I did and ignore the signs.   I waited far too long for my parents.  I have too many horror stories to tell about the consequences.  I wish I had insisted on Mom going to her doctor.  As it was, she didn't have a GP and I worked for months to find someone to send her to.  And although a friend went with her to her appointments, she missed some and ignored others, like the neurological specialist who would have given us some indication of her illness a year or more earlier.

Although I talked with Mom about her forgetfulness, she never once mentioned Dad having difficulties.  Either she didn't notice, or she was covering, it's hard now to tell what was on her mind. 

I was a poor excuse for a daughter in the regard that I didn't push harder for them both to visit doctors.  Or talk with their neighbors and friends sooner about the things they were noticing.  

Frankly, in the end, it was a phone call from a good friend that sent me to see them the last time.  I found them living day to day with help from neighbors and friends and I was blind to the entire situation.

Talk to your parent and insist that they visit their Doctor with you in attendance.  Ask the nurse to have you added to the list of those with whom they will discuss health matters.  If you think that their Doctor is not taking your concerns about your parent seriously (this is another huge topic of discussion), then find them another doctor that specializes in the elderly.  When I finally got my parents to Ohio, we found a wonderful geriatric practice and our experience has been good with them. 

Look for the warning signs.  Don't be overeager to find things wrong - we can all suffer from confusion and lapses of memory, but be honest with yourself and your parent if you see any of the signs.  You'll be a step ahead of the disease if you do and not just waiting to be bowled over by it like we were.

Monday, March 9, 2015

LET'S TALK CAREGIVING

Everyone is a caregiver in one way or another and at some time or another.  If you're a young family, you are giving care to your children while you raise them.  Many people are raising grandchildren today, these people are caregivers.  If you have a neighbor that you keep an eye on, in a real way you are a caregiver.  If you have a spouse with an illness, you become their caregiver.  If you're an older adult, chances are that at some point you will become a caregiver to one or both of your parents.  

With the exception of raising kids, most caregiving is over within a set length of time.  Illnesses generally do not last for years, so caregivers go back to their "real" lives sooner rather than later.  

These episodes of caregiving are part of what being a family is all about.  You love someone and when they are in need, you give care to them. 

Now let's talk about Alzheimer's caregiving.

Like most other types of caregiving, the need your loved one has may sneak up on you, like it did for me.  Although I saw it coming, when the actual time came for me to step in, it was with a sudden and painful jolt to my life.

The caregiving of my parents has consumed my life in almost every way.  How I interact with friends has changed.  Involvement in my community has been severely limited. Extended family interactions have gone from limited to strained to limited again.  It cost me my long time job. And it's put a mental and physical strain on me that I was in no way prepared to handle.

But, enough about me.  Let's talk generalities.  Because there are millions of people like me out there doing the best they can to handle the day to day caregiving to their loved ones with Alzheimer's.  And there is a huge cost to that caregiving.

Here are some numbers for you to contemplate.

According to the Alzheimer's Association, in 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer's and other dementias – care valued at $220.2 billion, which is nearly eight times the total revenue of McDonald's in 2012.


Let's just stop here and think about that for a moment.  EIGHT TIMES THE REVENUE OF McDONALDS.  And guess what?  People that work at MickyD's are paid slightly more than minimum wage.  Caregivers do all that work for NO WAGE AT ALL.

17.7 BILLION HOURS OF CARE FOR NO WAGE AT ALL.

Caregiving for parents with Alzheimer's is a 24/7 proposition.  Down time is almost nonexistent, even if you aren't actively "doing something" to give care, your mind is working frantically thinking about all the things you need to accomplish and are now responsible for.

Someone in my support group put it this way - it's like having two bodies with one brain.  You have the responsibility of dealing with your own needs, plus doing the thinking for your loved one who can no longer think for themselves.









And how about this ladies...More than 60 percent of Alzheimer's and dementia caregivers are women.  The lucky caregivers are those that have the help and support of a spouse or child that will lend a hand where needed. 

All caregivers of people with Alzheimer's – both women and men – face a devastating toll. Due to the physical and emotional burden of caregiving, Alzheimer's and dementia caregivers had $9.3 billion in additional health care costs of their own in 2013. More than one-third report symptoms of depression.

AND IT WILL ONLY GET MORE WIDE SPREAD

The numbers are there...by 2025, nearly half the people over age 80 will develop Alzheimer's.  Every one of those people will need at least one full-time caregiver.  

Monetarily this is a daunting thought.  The emotional and physical demands will be just as devastating.

WHAT CAN WE DO?

Immediately, if you know someone who is a caregiver of someone with Alzheimer's, find a way to give them support.  Prepare and take them a meal.  Ask if you can sit with their loved one while they go get their hair done or do some personal errands.  Offer to do their grocery shopping.  Sometimes the best offer is to simply go visit and offer moral support.

One a higher level, we can all work to fund research to find a cure for Alzheimer's.  Tell your government officials that you want them to do all they can to support the research with our tax dollars.  Donate to the Alzheimer's Association's funds for research into finding a cure.

If we can find a cure, the need for caregiving would disappear.  How wonderful would that be?