Friday, August 30, 2013

Fast Friday facts

#sharkrap cracked mom up - how is that possible?...but she laughed out loud!

Hair appointment baby step - I sat in the entry room and read while she got her hair done - felt almost like a vacation.  She was happy, I may actually finish the book I started in June!

When mom decides to get nasty - STOP!  any attempt to speak, act, smile, frown, change the subject is just asking for trouble.  Just look down, move slowly and wait for the storm to pass.

Mom prefers Peyton's school car-rider line to Central's - high schoolers require more explanation! 

If mom refuses to do her exercises/walking.  I just get up and move from room to room and she follows me - it's kind of cheating, but it gets her up and moving!

Had to buy scented body wash for TKP - when I use the unscented stuff I still smell like chlorine after I shower and it torments mom...what is that smell, you don't have a pool, are we at the motel?

Mom has zero memory of Bob, her second husband - even with pictures.  She still remembers daddy - but it's sad!

Mom likes Monk - it's the one thing she and Peyton can watch together.  If Peyton laughs, so does mom.  When mom laughs, so does Peyton.

AnnMarie, our hairstylist, loves to tease mom about finding a boyfriend.  If she only knew!

I am so glad my entire family is home tonight....I have faith that mom will go to bed without incident and we may get to spend a couple of hours together.

Thursday, August 29, 2013

Sometimes you've just gotta laugh...

It's been a couple of long days.  Tuesday, the kids went back to school and with that - all the little changes that a family has to make to survive.  Obviously, I've never given much thought to the impact changes like this have on the person NOT instituting the changes.  When the kids complain about early bedtimes, I ignore them - I know best, after all!  When they fuss about rationed time for electronics, tv, friends - I ignore that too.  And I've always been able to use the rationale that "if you want to _____________ (play baseball, be in dance, have friends over, get into a good college), then you'll ______________ (keep your room clean, get your homework done first, be upstairs and in bed by 10:00)"  It makes sense to them.  Especially Keaton - my totally motivated by incentives child.  Peyton is still young enough that she listens to me and is clinging to the belief that her mom is pretty smart.

The wrinkle this school year?  Mom!

All summer long she has been sound asleep before I started the kids on their nighttime routine.  The house has been quite until she finished her breakfast.  Meals happened at mealtime.  And all of this agreed with her.  (I think I may have mentioned that mom expects to be the center of the universe!)

Tuesday night was one of the most difficult nights my family has had since she moved in.  I was trying to organize kid pick up with Patrick at work and not drag mom out of her comfort zone too much.  I did okay starting out - picked up Peyton with mom in tow, came home, took Peyton to Gracies and got back before mom even missed me.  Mom sat with me while I prepped dinner - turkey burger patties made, potatoes cut up to roast, table set, peaches sliced.  I got her a snack to "tide her over" since we weren't going to eat until 6:30ish.  Then it was time to pick up Keaton and get Peyton from Gracies and get Peyton to tap.  I ran to get Murph, grabbed Peyton and dropped Murph off to sit with mom while I drove her to the dance studio.  She decided she had to run in to grab a snack (for a 45 minute class!) and I decided to wait in the car - we were cutting it pretty close. 

Apparently mom threw into a full-on tantrum at the kids - she thought I was her sister, I was stealing her car and she had been left alone for HOURS and the kids needed to tell me to come inside NOW.  Keaton tried to explain, Peyton didn't know what to do so she just ran out to the car.  She told me mom was upset that I was stealing her car, but I didn't get the full impact of how crazy she had gone (we were running late and that traditionally dulls my judgement concerning the importance of anything that isn't about getting where I am trying to go!)  No worries though, right?  I passed Patrick coming home as we were turning out of the neighborhood.  WRONG!  By the time he got here - she was ticked off and being pretty ugly to Keaton - who, bless his heart, was trying to calm her down and reason with her. 

Lots transpired - Patrick and Keaton went outside to start the grill and toss the baseball.  I got Peyton to dance, paid her tuition and came home.  Mom was annoyed by the time I got home - by now a stranger had come into the house, grabbed her keys and stolen her car (I think this was Peyton) and she'd been left alone all day since I left for work early this morning and she hadn't had a thing to eat all day.  To her credit, she was a mess.  I believe she was genuinely confused and had convinced herself all she was thinking was true.

We finally got sat down to dinner - she was in rare form ("I don't suppose there's enough for me to have some?", "I am so sorry to impose on your dinner - I thought my daughter was coming for me this evening or I'd have made other plans."  and then some obsessive pickle eating.  Mom loves her salt and she is not supposed to have much - so last night she made up for it by eating pickle slices.  I put like 6 on her tiny turkey burger and she informed me that she prefers a few more.  So I put 6 more on her plate and she put those on.  Then she asked me, pointing at the jar of pickles, if those were pickles and could she have a few - I probably wasn't aware of her fondness for pickles.  So I dug out a huge pile and she complained that she didn't need THAT many and then promptly ate them.  Peyton's eyes got so big watching her - she was mesmerized. 

The kids were trying to tell Patrick about their day and she kept interrupting with the most bizarre questions and statements (trying to get the focus back on her, I think, but maybe just trying to deal with her blowup from earlier - which I am sure she didn't remember in detail - just a vague knowledge that something off had taken place).  Sometimes it hurts the kids' feelings when she does this, but they were troopers - they plowed right through, pausing to answer her or let me answer her.  She couldn't get to the couch fast enough after dinner and the kids were so much help just so they'd have something to do in the kitchen.

It was also supposed to be our first immediate-family-only-night (I-FON - or i-Phone, as I like to call it!) - I was committed.  Mom was pissed.  I was firm.  The family was uncomfortable. 

After only one reminder that she needed to stay in her room - she rolled her walker out and sat down right between Patrick and I! - mom did her level best to follow the IFON rules.  She did go to the bathroom about 10 times in 90 minutes and she took really long pauses in the kitchen making little noises to try and get someone to invite her over.  We were strong and we ended up with an entire evening all to ourselves. 

Her need to be where people are is actually quite sweet - and her efforts to be noticed, but to still do "what she is supposed to do" were so adorable.  We'd hold a straight face for as long as she could see or hear us, but when she'd finally go back into her room, the kids would laugh and Patrick and I would roll our eyes.

We all know she doesn't mean to be ugly and that she is sick, but that doesn't always make up for the behavior.  It was nice to bond as a family for a little while and the truth is - she didn't even remember any of it the next morning.

Yesterday was full of the same - too much to type, but she did eat 2 dinners - one at her dinner time and then another when I fed the kids "since no one had bothered to feed her yet" and she took out her dentures, cleaned them, put them back in the next trip to the bathroom (2 minutes later) and left them soaking in her ice cream dish.  I am sure it wasn't the best thing for the dentures, but I was at a loss, so I left it.  It really threw her off this morning....I tried to explain and decided against it.  When I turned the tv off at 9:00 to get the kids started on their path to bedtime - she did that thing where she was a classic 'victim' and the kids were mean Meadowlakes residents who didn't want her in their clic and I was some kind of prison warden who was on their side and lying to her to make her look stupid.  And there is the silver lining of the ice cream would have been so easy to get angry about her words and actions and facial expressions and then she soaked her dentures in an ice cream cup.  We've got it pretty good in comparison!

I spend the most time with her - so I can ignore it better than the kids - I know it doesn't hurt her to change the subject or just leave the room, I know she can't be reasoned with or convinced, I know my sanity depends on being able to ignore the bad stuff.  I am learning that it's okay to laugh about some of the more ridiculous things she says and does - it's not done to hurt her feelings or to make fun of her - it's to release some of the tension brought on by having an ALZ patient in our lives 24/7.  We are never mean and there is a reason there is a saying that says "If you don't laugh, you'll cry!"

Today is going to be another tough one - Keaton has his first football game, Peyton has dance, mom can't go to the game (it's going to be 103 at kickoff and the air quality is red) and Patrick's dad and Sue aren't able to come over like we had planned.  I am going to try and get Peyton to dance, catch at least an hour of his Freshman game and get home before mom loses it.  Hopefully get her dinner and settled down before everyone else gets home....hopefully!

Tuesday, August 27, 2013

Thank you Jimmy Fallon

I have always thought Jimmy Fallon was hysterical - everything I've seen him do cracks me up.  I'm beginning to think it's genetic!  I started recording Late Night a couple of weeks ago so I could see Timberweek again and the most convenient time to watch them is after lunch with mom.  She loves the show!

I am convinced she doesn't get all the humor, but you just can't hide funny!  We laugh and smile and she stays in a good mood for the entire show.  I have tried it with Ellen and Steve Harvey and Dave (sorry Jay, you're just not my cup of tea) and none of them entertain mom like Jimmy!

Today, the first day of school, was a good day.  Got the kids off without a hitch, mom none the wiser - she slept through it all!  Had breakfast, did her PT exercises, cleaned bathrooms and did laundry, had lunch and then watched Jimmy until time to go get in the car-rider line.  Side note:  can't fast forward through commercials if mom is in the room - that really throws off the Happy Fallon mojo!  And I am LOVIN' the Happy Fallon mojo!

Monday, August 26, 2013

Protecting my sanity???

Tomorrow is the kid's first day of school.  This is a big deal in our house and it is so bizarre that mom can't remember and doesn't care.  I can tell it is frustrating me and I am not quite sure what to do about that.

I can't:
  • reason with her
  • remind her
  • scold her
  • create empathy in her
  • call back memories from my first days of school
  • get her to read the sign I made that says "tomorrow is the first day of school"
So I have just plowed through the day trying to change the subject or smile or find a reason to go to the other room.  There is just so much to do and it's the kids last day of summer and I have put off the Academy shoe-buying experience and I just knew it would be a bad idea to take anything too personally or to spend too much time with mom considering her mood.

She just doesn't like it when the attention is clearly not on her or we are talking about something she doesn't understand or can't follow.  How terribly sad that she can't remember that her grandchildren are heading back to school tomorrow.  How sad that whenever they tried to show off an outfit or those Academy sneaks we finally bought she talked about how long ago she was in school and how she was glad she didn't have to deal with that stuff anymore.  I was a little sad that she never once thought about my first days of school.  I mean, I don't remember it being a big deal, but the bts shopping was and the first day outfit was.  It turned out she didn't realize who I was - at some point she seemed genuinely surprised that I didn't grow up on a farm like she did.  Me, on a farm!  HAH!  I dream of rural Lisa, I read the Helen and Scott Nearing book, I shaved pigs ears at the Allen Co Fair (thanks Scot Lugibihl), farm Lisa has not ever existed outside some Little House on the Prairie daydreaming and one Laura Ashley prom dress!

So, tomorrow is the first day of 6th grade for Peyton and the first day of High School for Keaton and it will annoy the heck out of mom in the morning and then peace will descend on the house and mom will be the center of this universe until it is time to do pick up starting at 2:40. 

For now, it's bedtime - and it's a school night, so I'd better go!

Sunday, August 25, 2013

Tomorrow's Sunday, Tomorrow's Sunday

Mom has Sundowner's and it's tough to live with and to watch.  Last night she walked back and forth to her room to make sure it "was still there" 7 times in 10 minutes.  She paces and mumbles and gets a look in her eyes that makes me so sad for her.  She seems scared - I'm sure it's a form of anxiety, but when it's your family - you want to make them feel safe, feel better, feel relaxed.  I have tried everything I can think of and depending on her mood or the severity of her anxiety - there isn't anything I can do.

She is taking a pill at bedtime that has some positive effects - it's not a knock out pill, that can worsen the ALZ and it's not an anti-anxiety medicine - that usually doesn't work on ALZ patients like it does on others.  It's something we are trying with her physician and it seems to make her a bit more relaxed, but not until she is all the way in bed.

We've mastered the bedtime routine - sometimes mom gets a bit creative about it - which can make me nuts or crack me up.  Last night she did everything in the normal order, but she "took the back way" to her room just to keep things interesting.  But when she finally got in bed she was smiling.

Part of the nighttime routine is asking what day it is and looking at her white board that says what day it is and trying to make it all make sense.  Then she asks what day tomorrow is.  Last night after the third time she got a puzzled look on her face and said - "Wasn't there a song about that????  How did that go????" and then she started singing the funniest made-up song ever guessed it...."Tomorrow's Sunday!!!"  It went something like "Tomorrow's Sunday, Tomorrow's Sunday, do-dee-do-dee-dah.  Tomorrow's Sunday, tomorrow's Sunday, la-dee-da-dee-dah!" and then she would giggle and start again.  At one point Peyton came in and started singing along and it didn't even make mom mad.

She sang until she fell asleep and even after she fell asleep she would sort of mumble or hum her new song and was a really nice way to end the day. 

Saturday, August 24, 2013

Can't Win for Losing

No idea if it was a common saying or not, but growing up, "Can't win for losing." was one of my mom's favorite sayings.  And she had a lot of faves.  Hotter'n Ole Billy By Dern, Older than Mathuzalah, 6 a-one, Hot enough to bake eggs....stuff like that!

Anyway, at 5:48pm yesterday I knew exactly what "can't win for losing" meant.

Peyton and I had "Meet the Teacher" at her school last night.  And she was great about sharing with mom what would be happening - finding her room, getting her schedule, seeing which friends she had class with, seeing her teachers from last year, getting her locker - all that.  And mom seemed to be so pleased to listen to Peyton - totally showing interest and smiling. 

I talked to mom over and over about MTT and the PTA meeting and showed her the Box Tops we have been working on.  She smiled again, seemed to be pleased that we were including her. 

But like I said before, it was a jam-packed day.  I tried to sit down with mom for about an hour before it was time to leave.  I can sit with her and then run upstairs and do one thing or run into the kitchen or laundry room and do one thing and then come back and sit down again.  It allows me to get things done and for mom to not feel neglected.  I was able to get my makeup and hair done in little sections - I wonder if mom noticed my step-by-step transformation.  Every time I came downstairs I was just a tiny bit more presentable!

I even ordered pizza last night - a bargaining chip to get Murph more excited about staying home and being in charge of dinner.  A bargaining chip for mom too - she loves pizza!

All was well until it was time for me to take the girls to the school.  I logically know that mom can't remember, but I am still baffled when she acts like she doesn't know that we are leaving even though we have been talking about it all day.  That was when I realized "you can't win for losing".  She was seated at the table - pizza, freshly brewed cup of coffee and grapes in front of her, her very handsome grandson as her dinner date and when I said, "Mom, remember, I have to take Peyton and her friend to Meet the Teacher at her school?" she curled up a sneer and said "Well, I supposed they do that...whether it's dinner time or not...  But it doesn't seem very polite...not that it makes any difference I suppose....I'll just sit here..."...and that's all I heard.  We had to go and nothing I could say would make her happy that we were leaving. 

She apparently ate a good meal, was great with Keaton, complimented the coffee and told him how much she loved pizza.  She didn't dwell on us not being there - she never even asked where we were.  She sat with him in the family room for a bit and went in to sit in the living room when her ran out to tell the rest of his fundraising coupons.

That's where we found her when we got home.  Fine as wine.  Trying so hard to understand and be interested in Peyton's new teachers and her experience at the school.  We even made her a big ole dish of coffee ice cream to eat while P and I had our pizza - mom can't remember that she's already eaten.  Bad part of that is - the ice cream was much more interesting to mom than anything we had to say.  It's disappointing in a way, but it's reality and it doesn't do much good to get your feelings hurt.

Every day is different, every day is a lesson, and every day is a blessing.  Win or lose!

Friday, August 23, 2013

Busy Friday for everyone but Mom

Today is shaping up to be one of those days where if you don't plan and execute everything perfectly, something will crash or someone will cry or something will get missed.

I, selfishly, HAD to get to TKP to swim - I am on a pretty impressive roll (for me) and I don't want to quit and lose this momentum.  Keaton has his first football scrimmage.  I have 2 doctor appointments.  Peyton has a play date.  Patrick has to work at 3:00.  Keaton wants to sell his last 5 fundraiser coupons.  I have a PTA meeting.  Tonight is "Meet the Teacher" at PHIS.  And mom needs all the things mom needs.

I am a planner.  This is not a gray area.  I am an alarm-clock-setting-pack-the-night-before-over-communicating-list-making planner.  I make myself and those around me nuts.  Part of what makes me nuts is this new situation with mom.  It doesn't matter if I tell her what is planned for the day or if I put it on the calendar or if I write it on a note and tape it to her walker.  She won't remember.  This is different than if she has an appointment...those "stick" and although she can't remember details, she knows something is about to happen.  My stuff, the kids' stuff, Patrick's stuff, Sophie's stuff - could care less.  No room in the vault for that.  So I listen to her complain about there not being enough to do - all the while I'm folding laundry, cooking her breakfast, doing dishes, feeding the dog, watering the plants, making beds, helping Peyton and trying to stay in touch with Patrick to see how Murph's scrimmage is going.  (and YES, I am also dealing with the resentment of not being able to be there, but after mom's behavior yesterday with Peyton, no WAY am I leaving her here alone with mom....that just wouldn't be nice...and it's a scrimmage, not a game...but it's his first and I never miss firsts anymore...sigh...).

She is in rare form this morning.  Doesn't want to do her memory games, doesn't want to work the crossword, read the paper, look at a magazine, watch tv or work the jigsaw puzzle.  She is sitting in the red room gazing out the window and sighing at the rate of one long sigh per 3 minutes and 2-3 short sighs with some mumbling to show her displeasure, in between.  It makes me sad.  And not thinking of mom for a minute and thinking of me and P - it's a lot of pressure to fix it.  We like it when mom is happy, we feel accomplished when she smiles and sings and 'da-da-dums'.  But today we can't find the magic activity or conversation or show.  ARRRGGGGGGHHHHHHHH!  Oh well, as long as we are trying our best and not taking her displeasure personally...I guess all will be well. 

Time to help Peyton pack her school supplies for MTT tonight.  Gotta get that checked off my list before I leave for the doctor.

Thursday, August 22, 2013

Found it!

There are days when I am pretty amazed by my patience with my new life.  I have lots of "techniques" to help me find my center during the stress moments - counting to 10, prayer, finding the beauty in something, being thankful, laughing, watching food tv or just running upstairs to make a bed or fold some laundry.

Truth is - I don't really think about the effort it takes to be patient until I am talking to someone about my day or they ask questions and I explain some of the conversations and rituals mom and I go through daily.  One of my friends asked me the other day - "so, where is your breaking point?"

Today I found it!

It's a long story with no one at fault, BUT mom raised her voice at my daughter today and apparently - that's my breaking point!  I was still pretty darned patient considering, but I was ticked!  The worst part of the entire episode was my mom's inability to show any compassion or good manners or heart.  Alzheimer's is a cruel disease - for so many reasons, but especially for this.

Luckily, we had to leave for dance shortly after the ugliness and although I could tell mom had a vague recollection of "something" happening, but by the time we got back - it was over.  If I let myself think about it - I can tell I am still angry.  If I talk about it - it's funny, sad, frustrating and I don't feel the anger.

Luckily #2, we are 10 minutes from bedtime routine and I can do anything for 10 minutes.  In classic bedtime fashion - we are focused on what day it is and what day tomorrow is.  She also has started talking in her loudest voice to no one in particular about how she really isn't tired...and then she nods off...and then she wakes up and says it's too early to go to bed...and then she nods off...7 minutes to go.

I wonder if my mom ever came to my defense like I did for Peyton today?  I can't remember it if she did.  I wonder if Peyton will remember this.  I love the line in "Only You" where Marisa Tomei says "I know he'd fight tigers for you."  I've always known I'd fight tigers for my family - who knew mom could be a tiger!?

Wednesday, August 21, 2013


Out for lunch with mom.  Busy restaurant.  Using mom's walker for a chair saving space and feeling special!

Weird Reality

I'm so glad that mom is starting to feel at home in our home - calling her room HER room, identifying specific places for all her things to go, occasionally watching tv in there and now, going there when our house gets a bit too overwhelming!

The down side has everything to do with her lack of memory.  When she was at Meadowlakes, I guess she knew she was a boarder (is that even still a word?).  But we keep emphasizing that this is her home too and to make yourself at home and wherever you want to sit and whatever makes you most comfortable...I may have overdone that a bit.

This morning I got home from swimming (and YES, I did rock it!) and Patrick was coming out to head over to see Murph's football practice so we stopped and talked in the driveway.  Sophie must have seen us and Sophie LOVES her humans.  My guess is she came to the door and did that very cute standing at the window thing she does and mom got up to let her out! 

Sophie is a sweet dog but would never be referred to as a well-behaved dog and we never let her out front without a leash.  Even with her leash, she is an enthusiastic wanderer and really hard to keep up with - so imagine the beast roaming free in the neighborhood!

So when the front door opened and mom in her nighty and Sophie in her enthusiasm peeked out - and me without any random bacon in my pockets! - I was stuck in a weird reality.  Not to act too anxious so Sophie wouldn't pick up on the fact that she was NOT going out on an early morning adventure.  Not to act too frantic so mom wouldn't get defensive and we would have to spend the entire morning coming out of that dark place.  And all of those thoughts happening in 2 seconds or less....well, maybe 5 seconds, because I have to admit, when the door opened I had to stop for a second and process the whole picture and not giggle.  Mom is a hot mess in the morning - hair wild, nighty less than flattering, and still in that semi-awake funk.  And peeking out the door - she and Sophie matched - hair, wild eyes and that look of trying to get away with something big! 

I did the best I could - Sophie never made it down the walk and neither did mom.  I probably over-explained why Sophie can't be let out the front door and mom started to get defensive and say things that very likely are true in her mind, but aren't true in the non-ALZ world.  That used to make me angry, but now it's just another part of the weird reality.  Anyway, I gave her some time and space and by the time she finally got up - we just went at our morning like any other morning - but 45 minutes later than usual.

I'm going to pay the price for that today - meal times are all stacking up on each other - I'll get it back to normal by dinner - hopefully.  If not, small price to pay for having my dog safe and sound and my mom none the wiser!

Tuesday, August 20, 2013

Whistle While You Work

Actually, it's more like Hum While You're At the Doctor's Office - but definitely musical!

Today, mom had a doctor's appointment and I made the decision not to tell her about it before it was nearly time to leave.  I often wonder about the impact of lying in front of the kids - I mean, she point-blank asked me if she had anything to do today and I said NO.  But, if I do tell her about an appointment or that I have to leave to do something, she spends all her energy worrying about it.

Well, not actually worrying about IT, but about something - it gets stuck in there and she worries - frets - bites her nails - mumbles - starts and doesn't finish questions about "IT" - and can't eat or drink.  It's just not worth it.

So today, I didn't tell her and then when it was time to leave - it was an adventure.  She likes the appointments where all the attention is on her - especially when it's just for an INR check - no sickness, no lab work - just a finger poke and a lot of people fussing over her.  All of that with the bonus of a car ride!

My point is, she was in a good mood and she decided to show it by random humming and da-da-dumming - and she put some volume behind it!  Who cares, right?  She was joyful and she wanted to sing.  It made me smile.  And then it made me wonder - was it disrupting anyone else in the waiting room?  And then I decided she was joyful and who cares?  and then I went back the other way....and THEN - mom busted out in her version of "Yo Ho Blow the Man Down!"!!!  And she knew she was being loud and silly and she was just daring the world to say something.  Go Mom!

I decided at this stage of our game - Joy far outweighs decorum!  once again - Yay Mom!

Sunday, August 18, 2013

Darned if I do, darned if I don't!

Life lesson learned living with Alzheimer's - certain things "stick"

for instance:  mom will ask every morning where everyone is - thinking we are at Meadowlakes and wondering aloud where all the other women are that she used to have breakfast with.  BUT if I set down more than 2 placemats at the table she will ask who else is coming to breakfast or if there is room for her at the table...strange phenomenon

my newest 3-times-a-day challenge is Sophie.  She begs!  And mom constantly sneaks her the healthy food that she doesn't want to eat and Sophie is always an optimist!  If I feed Sophie before we sit down to eat - she begs and mom asks if she is hungry.  "Nope, she just ate!" we all answer with smiles in our voices.  "She sure looks hungry - did she eat?", mom asks.  and round and round it goes until I finally have to put Sophie in her kennel so we can talk about something (anything) else. 

If I wait to feed Sophie until after we are done (how we always used to do it before mom came to live with us) she begs and mom asks if she is hungry.  "She'll be fine - she always eats right after we finish eating." we all say with smiles in our voices.  "Poor little doggie - she looks so hungry." and we have another round and round until I finally have to put Sophie in her kennel. 

I'm thinking of going vegan to ease this pain - Sophie doesn't beg for fruit, salad, oatmeal, etc - just eggs, meat, cheese - of course then I'd have to listen to the kids complain about that - and mom would starve - she never met a vegetable she was very fond of except the tomato.

I guess this is another one of those Alzheimer Catch 22's!  Who knows?  Maybe Sophie will learn table manners yet!

Saturday, August 17, 2013

Back to "Normal"? Alzheimer's Normal, that is!

Well, the first day of school is rushing straight at us and I am beginning to mourn the loss of summer.  Not sure why - this hasn't been the summer of leisure I imagined.  The day trips to the pool, the picnics, the home improvement projects, the books upon books I was going to read...not this year.  The blessing of no longer working is more a blessing of necessity than leisure.  It has allowed me to be there for the kids and mom and to do so without the overwhelming stress of my former career.  I was driving past Peyton's school today and thanked God for this blessing - swept up in the total realization that I don't want to be anywhere else but with my family right now.

The point of all this is - August 27 is coming like a freight train and we have things that have to be accomplished.  Murph has football camp, Peyton is starting dance next week, Keaton has fall baseball, Peyton has grown 4" since last school winter and all her pants are ridiculously short, Murph's feet have grown, school supplies must be purchased and checked off the list and on and on.  I cannot be with mom every hour of every day and get all my boxes ticked.

Little by little I have left the house (and mom sitting on the big red couch looking out the window trying to remember the neighbor's - whom she has never met - names) to go to the grocery or Target or the mall or the hair salon or to get gas.  I have guilt and worry.  I have visions and inner conversations with my conscience.  I also have a sense of accomplishment and smiling children.  So far, no crisis or emergencies have taken place during these short absences.  So far!  Usually one of the kids or Patrick is home - but mom only wants me - and they are doing whatever they do - napping, computering, video gaming, etc'ing.

She feels sorry for herself - maybe not while I'm gone, but as soon as I get home - she uses phrases and sighs and body language to look for sympathy or show displeasure.  And if that were the only time she did these this, I might consider giving up these jaunts, but she does the same thing if my family is home and we have a conversation that doesn't revolve around her or watch a movie she doesn't understand or watch a baseball game and cheer.  She feels neglected any time she is not asleep or being entertained.

Mom has lost the ability to remember anything enjoyable - anything that doesn't cause her fear or make her angry goes away almost immediately.  Alzheimer's is a cruel disease - loss that is so different than death, but so similar.  I miss my mom - I miss laughing with mom over our shared past.  I miss watching sports and cheering in the living room.  I miss singing along with old Fred Astaire & Gene Kelly movies.  I miss missing Daddy with her - she doesn't remember Daddy anymore.

I am her staffer now - a long time butler or cook or housekeeper.  Someone she knows has her best interest at heart and is pretty sure she can trust, but not family.  The kids are my kids, but NOT her grandchildren.  Patrick is part time help, I'm pretty sure!  Maybe the owner or owner's son...nice man, of course, but not her servant.  Peyton looks too much like me when I was young - and mom was tough on me back in the day!  Keaton is the golden child - a boy - always preferred to a girl in mom's mind and quiet.

I miss my mom and thanks to the Notebook - I keep waiting for those flashes Gena Rowlands had - but there have been no flashes, no lucid moments, no 5 minutes of mother/daughter anything.  So off I go - getting back to normal - worrying less, accomplishing more, expecting less, celebrating small things, being thankful, prioritizing my time and energy and not being so angry that there aren't more options for in-home caregivers of Alzheimer's patients.

Wednesday, August 14, 2013

Lesson learned AND followed!

So, I believe I have learned that you can't reason with someone with Alzheimer's - especially when you are wordy like me!  By the time I get to the end of my reasoning, Mom has forgotten what we are even talking about and asks me what day it is!

Today, I made a good choice and followed the lesson I have learned.  Maybe because it was partly my fault?

I made lunch today and I am sick of the standard 5 things we eat for lunch so I made black bean veggie soup - I love it, it's economical and really good for you.  I knew it would not make mom's fave list, but I want her to have a variety of foods and for her to stay physically healthy, so I tried.  I didn't give her much and I added a pinch of sea salt to give it the saltiness she craves.

Bless her heart - she tried.  She dunked her 1/2 sandwich in the soup, she took a few spoons, she tried...but in the end - she drank her coffee, ate her sandwich and peered over the edge of her tiny soup bowl and sighed.

I got up to do the dishes just like always and out of the corner of my eye I see her feeding Sophie the rest of the soup!  I jumped into action and got the bowl away from both of them - not an easy feat.  Mom loves
Sophie (or that little doggy, as she calls her) and Sophie loves people food.  All I could think of is when Bagel got a hold of a bean burrito when I was pregnant with Keaton (my first trimester craving) and her little dog belly swelled up and she waddled around the house tooting for 2 days.  In classic pregnancy form - sometimes it made me laugh hysterically and sometimes I just burst into to tears!  Either way - I would rather not repeat this event with Sophie!

Anyway, instead of showing any remorse, mom went into action telling me she'd always fed her dogs soup and "anything else I wanted to".  I know she has no idea I'm her child or that I lived with her for many years and the dogs were mine - but I can honestly say at no point did HRP or Casey ever eat soup!  I remember mom making chicken and sometimes rice for HRP when he got really old and she fed Casey that disgusting Alpo in a can, but other than the occasional pizza crust or green bean, I am sure they did not feast at the table with us. 

A non-ALZ person would have probably said they were sorry, but not mom - she became a 10 year old and went into excuses and her loud voice.  I wanted to scold her as if she were my was my first instinct.  I suppose it's because in many ways I am her mother - food maker, clothes washer, medicine giver, tuck her in-er, alarm clock, chauffeur, etc.  However - I know better.  And since this can't be about me or manners or learning I walked upstairs to put on a bit of makeup.  I was gone for maybe 7 minutes and mom has no recollections of the Black Bean Soup Caper (Sophie is still smiling through her nasty bean beard!) and I don't have a headache!

Lesson learned AND followed - I'll be giving myself a caregiver gold star for this one!

Tuesday, August 13, 2013

Birthdays are tough

Yesterday was my birthday - and the only thing I wanted was to not have to take care of mom.  Much like on the occasional Mother's Day - I want to be left alone or for my kids to be angels all day!  The problem with wanting to not have to take care of my mom is that it's just not realistic.  I wouldn't dream of asking Patrick or the kids to get her up and ready in the morning and she has to get up and ready.  I hoped that by fixing her lunch and sitting with her talking about her would make it easier for me to leave her to have lunch with my family - it didn't, but it was a great theory - one that I HAD to try!  Mom goes to that darker place in her personality in the evenings, so I knew I had to be home with her for that...anyway, I wasn't able to give up all caregiver duties just because it was my birthday.

I knew all the way down to my toes that she wouldn't remember my birthday - she hasn't remember it for the past 5 (and now 6) years.  But, always the optimist, when I wrote the day and date on the board in her room and she said "August 12...?"...I nearly burst with excitement!  Of course then she said - I guess that means I've got another birthday just around the corner.  Then proceeded to talk about getting older and how difficult it is, etc. all the while my "still trying to win the approval of my mom" Lisa was devastated. 

It came up in conversation over the course of the day, and she was polite enough to say "It's your birthday?  Really?"  but she never felt bad that she had forgotten her only child's birthday or apologized.  Alzheimer's is weird.  Is it pure survival that makes mom so self-absorbed?  Is it possible that the first part of her brain to go (after the short term memory) is her sense of remorse?  I have no idea and either way - it still hurt my feelings that my mom didn't remember and then didn't care that it was my birthday yesterday.

No cake, no cupcake, no candles, no birthday song - BUT - I got an entire day with Patrick and the kids, I swam 40 lengths of the pool without stopping, I got to escape to lunch with my family, I got 60+ nice messages from friends and family on Facebook, I got the best ear buds and handmade cards from the kids, I got to watch part of the Browns pre-season game, mom didn't fall or have an anxiety attack while we were gone, I had the best ribs for dinner and we laughed all day.  I forget how much fun we have as a family - Patrick and I have always shared a similar sense of humor (which the kids are adopting) and when we have time to just hang out together - we laugh.  A lot.

I went back and forth yesterday trying to hide my birthday from my mom so she wouldn't feel bad and then when I couldn't completely hide it from her, I realized she didn't feel bad at all.  I am sure this is a common part of caregiving - I'm just glad I don't have to deal with it for another year!

Saturday, August 10, 2013

One man's chores is another man's boring...I guess!

Saturdays are made for chores at my house (now that baseball is over and before dance competitions start).  Sheets, towels, bathrooms, counters and lots of laundry.  I also tend to play Food Network all day long to entertain me while I'm doing chores...when I need a break, I back it up, watch someone fabulous do something fabulous to create something fabulous...and I'm usually motivated to finish something around the house with a bit of extra flair.

Today started off great - I worked on the bedrooms earlier in the week, so that was a breeze!  Even Sophie waking mom up 15 minutes early didn't throw me off.  We had a wonderful breakfast, she ate really well (for mom - that means 1 egg, 1/2 English muffin and a slice of cantelope...but still!), she took her pills without any mishaps (I have nearly perfected the morning pill line up - the order in which I place the pills by her plate, in front of her water cup and so the pill that is the hardest to get down doesn't get taken first...which is harder than you might think - she never takes them in the same order...weird, huh? I just have to get in tune with my inner Peg and guess based on the chi or the vibe or the lines on the placemat - whatever!...and I am on a roll this week!).

All was well until after lunch - the kids brought down the laundry and she got really sarcastic about the laundry - as if it were beneath her and what kind of woman was I to make so much dirty laundry.  I wanted to scream at her.  And she wouldn't let it go.  That's when I committed the caregivers biggest mistake...I talked to her about it - reasoned with her, explained to her, was honest with her....what was I thinking?  So, in an effort to make up for her sarcasm and hautiness, she decided to wring her hands playing the victim for "just sitting her not helping".  Poor you (whoever I was!) and how can I help.  Well, there's a good question - How CAN you help?  Mom doesn't have the physical strength to bend down to pick up laundry, to carry laundry, to load a washer or dryer...she may or may not remember how to fold how could she help?  And, as I am sure I've mentioned before - I sort the laundry in the family room since our laundry room is not exactly spacious and the pile of laundry baffle her.  She fixates on them.  Stares them down, puts her face in her hands and looks up quickly hoping they've disappeared. 

I tried every response - peppy, polite, pshhhaw, joking, serious, grateful - every way I could think of to say "thanks, but no thanks", but she was like a dog with a least 2 hours of this back and forth laundry drama.  Finally, at 2:10, she nodded off.  I was stealth washer woman for 35 minutes...pure, super quiet joy!

So, she wakes up and she no longer wants to help - she is bored.  "Where is everybody?", "There's sure nothin' goin' on around THIS place!", "I don't suppose I'm going anywhere today...", "I'm going in the other room and see if anybody is doing anything in there.", "This is the most boring, longest day I can remember in a long time."....Arrrgggggggghhhhhhhhhhhhh!  I offered the newspaper, cross word puzzle books, magazines, a book, a movie, the golf tournament, Cowboys preseason football (only because they aren't showing the Browns game until Monday), a snack...she told me she had already done all those things (NOT) and then put her head back and sighed. 

It's weird to try and entertain someone with Alzheimer's.  You can't have a conversation because they can't follow along, don't remember from one sentence to the next and mom, at least, makes things up to seem more like she doesn't have Alzheimer's.  I can take her somewhere to do something and she won't remember it 5 minutes after it's over, she can't watch a movie - even ones she knew so well when she was younger.  Mom and I always had a special bond over movie musicals - especially Gene Kelly and Fred Astaire movies and now she gets so caught up in who the actors are (because I think she knows she should remember them) that she can't enjoy the movie.  She used to love sports - not so much anymore - even the classic games on one of the ESPN stations or Tennis Channel don't interest her.  I want her to be happy or at least contented.  I certainly don't want her to be bored (I despise it when my kids tell me they're bored!!!). 

Mom is winding down again for the evening.  It's a tough transition, but at least it's something we've got a "set in stone routine" for ... One last load of laundry to transfer from the washer to the dryer...even though mom doesn't know it - I am going to bask in that accomplishment!  Good night!

Friday, August 9, 2013

Back To School with minimum drama with my mama!

Today is the start of Tax Free Weekend - something I try to avoid like the plague.  Unfortunately, this year, it coincides with the start of the $10 jeans sale at Old Navy.  Peyton does not love jeans, but there are always occasions when she needs them - so $10 jeans are the way to go!

I also HAD to go to the grocery - still a joy for me, even though I know it's tough on mom when I leave.  Today I went to the Neighborhood Market - nothing fancy, but I still love the grocery!  I talked to an old friend the entire time I was shopping - two for the price of one!

Anyway, I think we are all settling in to the fact that life is just different these days - and that includes mom.  She's snarky when she isn't getting her way and especially when I am not around, BUT she is finding a routine or pattern or comfort zone.

I was worried about today after the doctor and the blood draw yesterday.  She really hates it when the doctor or nurse talk to me about her - even though I think she realizes she doesn't have any idea if she fell recently or has any pain - she does not like them asking me first.  So I try and make it like a dance of words - they ask me, I ask her and then paraphrase the answers in a way that makes it seem like I am answering, but will allow her to override me if "I get it wrong".  I always follow up with a "That's right, isn't it Mom?"  That seems to help her save face or whatever she's doing and although it makes it take longer, it keeps the peace!  I am a fan of the peace!

Anyway, Patrick is closing today, so he was going to be home until 2:30 and I have to strike while there is opportunity to accomplish!  So I made a lunch favorite of the entire family - BLTs, baked up some freezer cookies to comfort mom, got Peyton ready quietly and we were out the door like ghosts.

She has taken to sitting in the formal living room (we call it the Red Room) when she is sick of whatever the kiddos are watching on tv or if we are being too loud or if we are having a conversation she can't follow AND whenever I am gone.  It's like she is watching and waiting for my return.  I'm Arturo - remember that from "Overboard"?  Funny!  And there she sat until Peyton and I returned with jeans, a new lunch bento and a cute t.  No interest on either of their parts to show off the new jeans or anything else...makes me sad - Peyton usually LOVES to show off anything new, but she can tell that Grandma gets confused about who she is and why she's excited about pants or earrings or dance shoes or anything else.  So, she made her poor brother pretend to be interested in her jeans and bento.  What a good boy!

She's calm now - we reestablish what day it is every few minutes, but we are done with the "how long were you gone? seemed like a really long time!" part of the conversation.  Maybe a breakthrough - maybe just a good day. 

I feel blessed by every good day - who knows how many more we will get.  Sophie is with us - constantly on guard, protecting the house, protecting me, keeping mom company.  She's not very snuggly, but she knows when one of her people (and mom is definitely one of her people now) need her to stay close!

So one more BTS thing off the list - tomorrow:  cami's and long shorts, maybe some leggings.  She wants to keep her last year's backpack - I am over the moon happy about that!  Hopefully we will manage tomorrow's shopping with as little drama as today.  Fingers crossed!

Thursday, August 8, 2013


Unfortunately, that is exactly how much patience I have today.  Not just with mom ... with other drivers on the road, the older couple that cut in front of us at the Lab, my kids, the radio personalities, the lifeguard that kept his head down most of the time I swam this morning.  I haven't been snappy, but I FEEL snappy.

It's muggy - my least favorite weather kind of day.  It makes my hair happy, but I am full-on hateful about it. 

I fear the next 3 weeks will make or break me - we are in that "back to school" mode.  Summer dance is finished, but fall dance is starting, along with a baby shower (and the shopping that goes with it), a parent meeting and a desperate need for new tights.  Meet the teacher is coming up - how to handle that and keep mom happy?  Baseball is over, but fall conditioning baseball is starting.  Football is starting - at night - how inconvenient.  Then HIGH SCHOOL and a new start time and football after school and football games on Thursday evenings and, did I mention, fall baseball?!  Then there's back to school supplies and clothes and shoes that need purchased...and the ever-elusive backpack...always a pain in the rear.

Mom is irritable because other than breakfast and all other pre-10am activities - her life is not what she expects.  She's also anxious - trying to figure out why it all doesn't make sense - taking her further back into "way back when".  "Way back when" has prompted a new QOD - "Did you go to town?"  Cracks me up...not that I'd admit it - I'm too impatient, remember?  :-)  You'd think I lived in the country not smack dab in the middle of the suburbs.  I must also be living in a Green Acres episode - because, really?  who talks like that?  Apparently mom did. 

When we were leaving to go to the doctor she said "Well, that's not what I am supposed to do.  I'm supposed to wait here until Grandma Perry comes and picks me up."  WAY back when!

And it's muggy - so I have lost all patience.  I have explained it to the kiddos - so they are tormenting me and I am being completely evil in a fun way and it all works out.  They are doing chores without being asked, staying out of my way, telling me how much they love me.  They must have my share of patience!  It helps.

It also helps that I realize I am not at the top of my game today.  I can work around it - I am probably only answering the QOD's/QOH's with 50% enthusiasm, but I haven't lost my temper or been ugly.  I was getting close, so I decided I would type a bit of Alzheimer's caregiver therapy!

Thank you blog for giving me a place to vent - I am sure it makes me better able to be there for mom.

Wednesday, August 7, 2013

Another Alzheimer's Catch 22

We live in Texas and it's hot!  It's August in Texas and it's HOT!  We haven't had any rain in August in Texas and it's lunchtime, so it's DARNED HOT!  And then there's the whole "we live in the Metroplex" pollution thing - so when it's DARNED HOT there is usually a HEAT ADVISORY and warnings for everyone with allergies, any illness, respiratory issues, etc to stay inside.

Mom has no idea we live in Texas, she has no concept of what month it is and she goes back and forth by the minute as to whether she thinks it's hot or cold or just right outside.  She can't remember that she has COPD or any of her other ailments and she certainly doesn't remember that every time I take her anyplace outside of the home, it takes me 2 or 3 hours to get her calmed back down.

So, she sits looking out the window and wants to go outside.  She asks about the weather - she asks if I've been outside today - she asks if she has anyplace she needs to go today - "it's so pretty outside" - "why is it so blasted cold in here?".  All of it means that she would love to go outside.  Mind you, we sit outside every morning.  I water the flowers, I deadhead and weed, I sweep and wipe down patio furniture, I pick up random sports equipment and dog toys that didn't quite make it back to where they belong after my kids got called in for dinner or dance or homework or a movie or whatever.  If it's a day when we get the paper - I read aloud to her.  If it's not a day we get the paper - I reread the articles from the day before that she found most entertaining.  She basks in the warmth and I sweat the overpriced BB cream off my face!

So what is the answer?  Do I tell her that it's too hot to be outside and that's doctor's orders?  Do I change the subject?  Do I remind her about being out earlier?  Do I downplay how long I'm going to be gone when I run and errand?  Should I be honest when I'm going someplace she no longer could master physically? 

I know I can't tell her ahead of time about any appointments that she has because she will worry herself into a frenzy.  She won't remember what we are supposed to do or when, but it sticks on the backside of her brain and nags at her until it's over.  And the funniest thing is, as soon as it's over, she forgets every shred of it - the worry, the appointment, any fun she may have had, ALL of it! 

I am adopting this for anything I may have to do, as well.  Her fear of me leaving is pretty intense.  Her reaction, as I have mentioned before, is usually anger toward me (whether or not she even knows it's me)... and that is before I leave and after I get back.  So I don't tell her. 

I just can't decide what to do about this weather thing - there is a real risk in having her outside on a day like this, but as soon as she knows she can't...she fixates on it.  For the first time in a long time, she doesn't care what day it is or if we've had lunch - she wants to talk about outside and the weather and how much she hates being stuck in this house.  What do I do? 

Mom has lost her ability to reason, to remember, to understand.  Once she's decided the man (that's me) is keepin' her down by not letter go outside on this beautiful day - she will nod her head and smile when I remind her that we spent the whole morning outside.  She will get downright disgusted and look at me with a deep distrust when I tell her the doctor has said she can't be outside when it's over 100.  She will have the same conversation with me about the weather - changing the details every single time - in an effort to break me down and get her way.

It's one of the things I never thought about...c'mon October!  I'm ready for a month of days we can sit on the patio from breakfast to dinner if that's what we need to do.

Tuesday, August 6, 2013

Anger is my kryptonite is not a happy day in mom's brain.  She is "all mixed up" and she is angry about it for some reason. 

Some days she laughs it off, some days she smiles and says "I ought to know that!", but today she is angry.  And she is angry and everyone around her - I believe she thinks we may be doing something to trick her or that is causing her to forget or think she is living in a different time.

She clearly doesn't know me today - she knows me, but on days like this, I think she thinks I am her personal assistant or home health aid...and today she is complaining to me about me!  It's funny and it's hurtful all at the same time.  It's funny because the things she is angry about haven't happened, but it's not worth the time it takes to explain that.  It's hurtful because although I understand she has a disease, I am trying so hard and making so many sacrifices that I want her to say thank you and appreciate me and my family.

It's been 6 hours since I started this post - and the day hasn't gotten any easier.  Peyton had a friend over, Tammy, mom's lead therapist came by and Theresa from REACH came by.  Too much action for mom.  It's times like this when she gets her most confused - I think she is trying to force everything that doesn't make sense into a scene she believes is her life.  The girls are new residents at Meadowlakes, the visitors are nice ladies thinking of moving in or visiting some other resident, I am Nanette and Sophie is the lady down the hall's dog. 

Now, my house still looks nothing like Meadowlakes.  The girls are 11 - how can you make them into 75 year old retirees?  I totally get how she confuses me with Nanette - I do many of the things we paid her to do - we don't look alike, but we act alike.  The lady down the hall has a cat...if Sophie knew, she would be one mad dog!

Mom has been visiting "way back when" today - I bought a watermelon - her very favorite food in the universe.  Well, back in the day, they raised watermelons on Grandma and Granddad Perry's property, so she keeps wondering if they still have cows and raise watermelons.  She also asked if I knew them and if they hired me.  I don't believe I ever even met them.  I know we have a picture of them in her things, but they have been gone a LONG time.  It's so hard to watch her believe in her mind that she is still young and they are still alive.  She told the doctor (with a bit of sass) that she knew exactly where she was - in Fowler, where she's always lived.  She also told him she thought she was 47...sigh...

On the bright side - I have been the master of interference today - protecting the kids and Patrick from her anger.  I can deflect and distract with the best of them!  And I had a great swim at the pool this morning.  I got in some great cardio and some pretty good strength in the channel.  I also had a wonderful visit with Theresa and made two doctor's appointments I have been putting off.  I got pizza delivered so there was no cooking at dinner and it was a hit with everybody.  Peyton had a great day at her dance intensive and Keaton got new cleats for football.

I guess I am over the sting of today - and it's no wonder - there are so many more things to be thankful for that to be upset about.  If the worst thing that happens to me in my lifetime is answering the same question 30 times in one day - I am luckier than most.  Superman found his way around kryptonite - I guess I will too!

Saturday, August 3, 2013

Miscellaneous from day

Challenges can equal frustration or solutions or coping or laughing or crying or avoiding or just plowing through...

Similar to the whole if a tree falls in the forest thing...if I need to make chocolate chip muffins while making mom's breakfast and she is in the other room going through morning routine, will she be able to tell.  Strangly, yes!  It's the whole instinctual thing I am starting to tune into.  She can sense when something is different, wrong, out of's weird.  And it's tough - because I can no longer sort the laundry in the family room unless I am prepared to answer questions about what is piled in the corning 40 times (sure makes me move quicker start to finish!)  So this morning I wanted to make chocolate chip muffins for the kids and mom could tell I was doing something different...was it the clang of the metal mixing bowl?  The smell of chocolate?  The heat of the oven?  What????  Interesting!

When I have to leave the house - I no longer try and be honest with mom in detail.  I try to be honest...for instance, today I had to take Peyton to her dance performance - get there early for them to line up, wait in the blazing hot sun, film her dance, fuss over the girls and then hopefully meet the rest of the family for lunch.  So I told her I had to take Peyton to her dance studio and that I would be home.  She asked how long - I said I wasn't sure, but at least 20 minutes.  It was true and 20 minutes doesn't upset her.

I had a friend coming over to work on a project today and I let mom know they were coming, told her not to worry, stayed in her sight line the entire time - what I learned was even though she appeared to be sleeping or watching tv, every time we said "Seniors" or "mom" she turned her head and asked what we were talking about.  And if one of the kids stood between us and she couldn't see me - she stood up and made sure I was still there.  She was a little upset that she didn't have my undivided attention, but she was less jealous of a stranger than she is with my own kids!

Mom has adopted a favorite cup - we have stacks of these colorful plastic cups (probably 10 ounces) for the kids to grab water, milk, juice in - some are holiday themed, some just colors.  Mom has adopted the one with a big "Grinch" face on it - the Grinch sneer, to be exact.  She loves that cup.  It makes her laugh, she refers to it as a "he", she talks about it and jokes about it with the kids.  It also makes her drink and I am under doctor's orders to keep her hydrated.  So thank you Dr. Seuss! 

Mom wants to watch tv, but she can't hear it - she also can't keep up with the closed captioning, so volume is the only option.  BUT it's so horribly loud that after about 3 minutes, we can't stand being in the same room.  It reminds me of what Larry C used to call "Bass Fatigue" at the OT2...that's a fun memory!  Anyway, mom loses interest really quickly and if I watch out of the corner of my eye, I can tell when it's okay to turn the volume down.  I think she really just needs to feel like she's doing something WITH us.  She can't really follow a movie anymore, so it probably frustrates her to try and watch the entire thing.  She also wants to feel like she is "fine" - no dementia, no arthritis - "fine" and being able to watch a movie with the family makes her feel "fine".  And once the charade is complete, she is watching a movie with us - she could care less if she can hear it.  So I turn the volume down so we can all watch the movie (and mom can pretend to watch) until something triggers her need to hear it again.  Usually I can get 15-20 minutes between volume spikes.  I'm used to it and consider it a win...I think the kids are still deciding!

Now it is bed time - mom keeps asking if "that is her room" and then wandering in to make sure.  I ask if she is tired and she says no.  Then is starts over.  Eventually (t-minus 20 minutes) she will know instinctively that it is time for bed and we will begin that routine.  I have to be careful how I answer her question - she can sense when I am not being kind or sincere or positive and that can take us down a dark, eerie path.  I like mom on the lighter side!

Just some miscellaneous from the day - a good day, I might add.  Counting my blessings!

Friday, August 2, 2013

Too much Friday for Mom!

I must admit - I am counting the minutes until this day is over!  I am physically and mentally exhausted, my knee is screaming at me, my hands are creepy from BoxTopping all afternoon, my clock is all off from trying to keep everyone happy and I feel myself slipping into that whiny place that no one ever wants to visit and certainly no one wants to live!

The morning after a sleepover is hard on me - I can only imagine how difficult it is for mom.  An extra person in the house, an extra voice coming from other rooms, kids staying up WAY too late (they finally came upstairs at 4:45am - Keaton tried to fib his way around it, but he's no match for me at 4:45am - that's my brain's peak activity time!!!).  Anyway, I kept mom and I on schedule until the kids started to appear at 10:00am - first Keaton, no problem, then Patrick, always throws her off and then Raegan - uh-oh! the new one - the one that doesn't quite look right, does she?  And, of course when she came down, she came and sat in the chair with me as close as she could be - just like Peyton...I could see mom's wheels a turnin'.  When Peyton appeared - mom started twisting that kleenex into oblivion!

It all fell apart about lunch time - I kept mom on her schedule - but why wasn't anyone eating with her.  I logically understand the absence of her short-term memory, but the fact that she can't remember 3 kids and a grown man eating muffins and cinnamon rolls and strawberries and making a fuss and a mess and all the chocolate smiles and the laughter still makes me go "hmmmmmm..." 

We ran to Sprouts so R could get something gluten free for breakfast since she wasn't in the mood for grits and I didn't want to cook bacon.  Sadly, the best looking thing in the case was a 4-pack of chocolate cupcakes - not technically breakfast, but really a cupcake is just a muffin in dress clothes.  Then Peyton had to get chocolate, chocolate muffins, cinnamon rolls for P and K and organic strawberries for everyone.  Anyway, we didn't get back and at the table eating until 11:15, so lunch at noon was out of the question.

The sweetest thing about this new experience is how safe mom feels with me - as soon as I walk in a room (as long as there is no one else around) she settles down and falls asleep or watches tv or looks at the newspaper.  Today, something kind of new happened - I'm not sure if it was due to the extra kids in the house - Murph had a friend over in the afternoon too - or if it was just a new discovery.  I have a bunch of Box Tops that need to be cut, counted, bagged and sent in before the school year starts, so why not work on them sitting in the living room with mom.  She clearly didn't like it - what was I doing?  Why was I doing it?  What is a Box Top?  What is a Box Top?  What is a Box Top?  She was every bit as anxious as if I was talking to someone else or gone for the afternoon.  The worst would happen when I was counting - she would ask me what day it was and I thought I could finish up the 50 before I answered....NOPE!  I think it took me at least an extra hour because I finally gave up and when she asked a question, I just started over.

Extra kids, a volunteer project, a couple of phone calls, meal times all messed up made for too much Friday. 

I think the thing I am wrestling with is finding a balance between keeping her contented, keeping our life normal for my family and not taking her cranky too personally. I am not going to ask my kids to give up their friends, activities, movies, games, singing, dancing, playing and all-around loud familiness that takes place and makes our home a home.  But, I don't want to dismiss her, I don't want to try and reason with her, I don't want to patronize her, I don't want to hide from her and I don't want to banish her to her room. 

Alzheimer's creates situations that destroy everything you've learned about difficult situations.  You can't reason with the person, you can't set down parameters, you can't talk things out or expect rational responses.  You have to rely on love and patience and gratitude and an occasional glass of wine and a place to vent.

Do you suppose I will read this in 10 years and remember things with the Cybil Shepherd lens?  For right now, it makes it somehow easier to deal with because I am writing it down, working it out, telling my story.  T-minus 42 minutes and counting until the bedtime routine begins...I am ready to let this Friday go. 

Mom is in full-blown Sundowners.  She will not be calmed down and she is mad because we don't think her questions are quite as critical as she does.  The kids are watching a movie, I am on the computer and she is angry that no one will be as mad as she about whatever she is mad about.  I have kindly answered the same question 15 times, but she is feeling a little off center.  She doesn't want to go to bed, she doesn't want to talk, she doesn't want to pet the dog, she doesn't want the blinds open - and now she doesn't want them closed.  Poor thing.  I promised the kids they would get until 9:15 every evening to call the house their home - because once we start the bedtime routine, we have to follow some new rules - it will be much easier once school is back in, but for tonight - 26 minutes to go!

Thursday, August 1, 2013

Choosing "Me Time"...without guilt

Is that possible with mothers and daughters?  ever?  especially when Alzheimer's is in the mix?

There are a few things I miss about my pre-caregiver life - the ability to move quickly and multitask, reading, the joy my kids felt about hanging around their home (this is now a deep sadness for me - I can tell they know we are doing the right thing, but they want their old house feel back), but the most selfish thing I miss - because it is not in any way a necessity - is going to the pool at Trophy Club.  I look forward to that more than anything else I do with the kids every summer and I just haven't been able to find time or the way to get there.  Today I went.  Patrick and Keaton stayed home with mom and I took Peyton and one of her friends.

I felt like I was pretty organized - we got out of the house on time!!! and that mom would be safe and just fine - she had PT today and a hair appointment (which I would be home in time to take her).  Truth is, if I would have been here - she would have slept most of the minutes that she wasn't eating or in PT.  Maybe she did - I didn't ask and no one gave me much info on her activities.  The question was - could I do this without getting eaten up by guilt?

I have to choose "Me Time" really carefully - because any choices I make that disrupt the schedule - make the rest of the day with mom more work.  Part of that choosing means choosing to enjoy the time away or time doing something just for me - showers at Keller Pointe, swimming laps, the 20 minutes after I put mom to bed and am getting ready for bed myself...3 hours at the pool.  I managed to not feel guilty or worry or over-text or anything for 98% of the time.  Someone pat me on the back!

I watched the girls flip and jump and fly off the diving board.  I watched them walking together from pool to pool - completely oblivious to the world around them, caught up in their conversation and friendship.  I watched them go down slides and ran my hands through sprinkling, spraying, shooting water.  I floated feeling the sun on my face and smelling the chlorine in my nose and the strength in my legs.  I got caught up in clouds, playing that game all by myself where I tried to find pictures in the sky - an eagle, a mouse, a bon fire and always God - the streams of light that shine out of the clouds down to the earth have always been a greeting card from Him, a reminder and a comfort.  I listened to the sound of the girls giggling, watched them compete and think about getting angry and deciding against it (yay them).  I talked to a friend who I adore that is going through a struggle that is not her fault, but that she probably can't win.  I played on my phone, I drank icy cold water on a very hot day and thought about how lucky I really am.  I went anywhere they wanted me to go, I appreciated the time I was allowed to spend alone, I smiled at strangers and although I have had a few "poor me" moments this evening - I am drawing on the memories of these 3 hours to remind me how blessed I am -memories that mom can't enjoy anymore.  Her memories are leaving her every day - more of the past is fading and the present is gone 30 seconds after it happens.

So can I learn to "live in the moment" and make that a good thing.  Is there a way to learn to enjoy right now since there is a very good chance that my destiny is sitting on the couch right across from me and "right now" is all I will have? Can I learn to trust and to give up control and know how important it is to keep exercising my mind even after it doesn't make sense any more?

I guess I will just focus on finding joy in "Me Time" whether it be 3 hours at the pool or 10 minutes washing my face.  And I will continue to celebrate not feeling guilty!