Wednesday, July 31, 2013

The day after the adventure

I've been thinking a lot about yesterday and how difficult it was for mom (and in turn, for me).  Obviously, I will never know what is going on in her mind or how she processes things, but even though she has zero clear memory of what we did yesterday or that we went anywhere or saw anyone other than the people she always sees - something registered.

This morning at breakfast she asked me at least a dozen times if she had to go anywhere today and when I said no, she said an emphatic "GOOD!".  I am taking that as a sign that she is started to think of our house as her safe place.

As far as her behavior towards me - the demands, the rudeness, the sarcasm - I have decided (and reserve the right to change my mind at any time!) that for the past 5 years, the only times I have seen mom in person, I have been there to accomplish things or to be a part of some event at Meadowlakes or to be her protector at the hospital.  So, for 5 years as her memory has been deteriorating - when I am in front of her is has been to do laundry or housekeeping or shopping or take her to doctor's appointments, fix her a meal, help her with her bath or to be her advocate at the hospital, etc.  I guess that makes her expectations that I am somehow at her beck and call reasonable.

I have carved time out every week to see that her needs are cared for - and I am usually by myself.  I remember when she first moved here, it was exciting for the kids to come to ML with me to see grandma.  That dwindled pretty quickly - Peyton, bless her heart, still asks to come occasionally, but I think that is because she can sense I need some support.  So I have to admit since mom cannot process the fact that I am with her all day long or that I have a family and a home to take care of, why wouldn't she be put off when all of my attention is not on her?

I swam laps this morning and I took 45 minutes to watch a show with Peyton (upstairs in my room - chicken behavior, I know) - that helps my perspective and my patience.  I am going to clean the upstairs bathrooms this afternoon for some private time and the reward of ticking off some boxes of accomplishments.  I started the laundry - but that is more ongoing than it ever is an accomplishment - especially now that baseball season is over - I have no uniform that HAS to washed by a certain laundry has returned to just laundry!

I have pizzas in the oven for lunch and a salad ready - but mom keeps asking over and over about lunch - so I am going to go bang around in the kitchen so it makes sense to her and she can relax for the next 5 minutes until we all sit down at the table.

The best part of yesterday's adventure is her contentment to stay home today....I need to remember that the next time I am in the midst of the next adventure!

Tuesday, July 30, 2013

Alzheimer's Catch 22

The funny thing about a disease that takes away your short term memory is - however you basically are/think/act/respond - that's kind of where you're stuck.

Anything social or different may bring a bit of joy or even brief excitement, but it also brings fear and anxiety to the person who is out of their element.  So, if you're my mom, you are going to immediately forget the joy and excitement and since you are now anxious or fearful because you don't know where you are or who the new people are, you are going to revert back to one of two things.

Thing 1:  sarcasm, usually at the expense of your daughter.  Trying to be funny and ending up inferring that I am not very good at taking care of her.

Thing 2:  selfishness, usually at the expense of everyone.  Mom is fond of all things related to mom - not people relatives, subjects, attention, stories, photographs and all conversation.

So today was Patrick's birthday and we wanted to get together with his dad and Sue and the kids really wanted to swim, so we decided to go to their house.  Mom has been there before and seemed to enjoy being there.  She was comfortable, happy to be somewhere new.  That was over a year ago.

Did I mention that Sophie had her first swim today???
I made the mistake of telling her we were going to their house while she was getting dressed and it was floating around in the back of her subconscious all morning and through lunch.  She was irritable.  I tried to keep us on the schedule, but there was so much to do.  I baked birthday cupcakes, the kids were packing the swim bag, getting Sophie ready for a car ride, etc and mom started to get nervous.  At the same time, no matter how or how many times I told her where and why we were going, she would put on a "poor me" face and say "I don't suppose I get to come with you".  She was anxious about going, but she really wanted to go!

It was a tough day.  It was important that we went, but it was a day-long struggle - the car ride, the afternoon - she wanted to be with us, but she doesn't want me to leave her side and she resents it when I talk to anyone else or have any fun.  There was an element of paranoia in her behavior today as well.  And I couldn't calm her down.  If I tried, shed drop the sarcasm bombs or fixate on some weird detail and then talk over everyone about whatever she was thinking about.  I tried the one word answers, the schoolteacher talk approach, trying to change the subject to one of the safe topics (weather, trees, Sophie, Fowler, her outfit or hair) - she just couldn't get past wherever was worrying her.

Today she was rude and mom has never been rude.  She was thoughtless to Jan and Sue and the kids. Sophie wasn't able to help either!

Finally, I took mom home early - she was just too anxious.  And the cherry on the top of my day was when she acted like I was mistreating her because I made her leave the party early.  Daddy used to say "You can't win for losing."  The perfect words to describe today.

Friday, July 26, 2013

Sundowners, it seems...

I should probably do a lot more research on Sundowner's before I go posting about it - but mom is showing the classic symptoms of the bit you can read on the google search results page!

Every evening about 5:30 she starts to wonder aloud if it's 'way too early to go to bed?' and if we've eaten supper THERE'S a word I miss from my youth - supper!  I still use it when we have Sunday Supper, but I think every other evening meal is dinner...I wonder why?  Anyway, no matter what kind of day mom has had - evening brings her fear.  At least I think it's fear - who knows?  and she certainly can't put a word to it.  She gets anxious when she can't see me - I try and pop over every couple of minutes or so while I'm fixing "supper", but if I get caught up in my imaginary "I'm the Pioneer Woman" or "the fabulous Anne Burrell" moment, I forget and she calls my name....and when she sees me, she either has a body language collapse or she smiles and lights up - either way, she says "Oh, there you are!" and then she's good for another 2 minutes.

I try and sit down and eat with her every meal - it's especially important in the evenings.  And if I guess her appetite correctly and she enjoys the food (tonight I took the leftover calzone filling (Pioneer Woman) and marinara and boiled some penne, then mixed it with a can of diced tomatoes, a quarter cup of cream, some pasta water and some fresh basil ... and some red pepper flake for me - don't tell mom! ... and I toasted some Italian bread with lots of olive oil and garlic and we had a hit on our hands!) we have a wonderful, pretty relaxed meal.  Her favorite subject at the dinner table is the trees in our backyard - she is tree obsessed right now.

After dinner the "What day is this?" begins and it increases in frequency as it gets closer to bedtime.  Sometimes we can find a distraction that holds her interest and takes away some of the fear - last night it was that show "Celebrity Game Night".  What a hoot - I was the only one who wanted to watch it - I got a collective eye roll from my family when I put it on...10 minutes into it - everyone was back in the family room laughing out loud!  Even MOM!  It was fun, it was funny, it got everyone shouting answers at the tv, the mood was a bit frantic, but it was something mom was part OF, not wondering about (that's the kind of frantic we get when Peyton decides to break into a dance routine or gymnastics run - freaks mom out!)

Tonight Patrick got home late from a very long day and both kids had mini-disappointments - Peyton's friend couldn't sleep over and both of the games Keaton was supposed to guest play in got cancelled due to rain.  SO, mom and I are in the red room - I am typing, she is looking at trees and asking "Lisa, what day is it?"  She seems pretty peaceful - I've gotten her to laugh quite a bit today - laughter is magic.

I've been reading her the articles about the royal baby every day after breakfast and she likes that.  I am still in the hit and miss stage with what I can and can't read to her - anything with a really familiar name upsets her because she knows she should know who that is (and yes, I am tempted to tease her with Hillary Clinton, but that would just be mean.  Besides mom doesn't vote anymore, so we aren't cancelling each other out every 4 years...that's a good sign for Hillary in '16)  The articles about plants or gardens, the real estate descriptions of the spectacular homes, anything about pets and the royal baby make mom smile and sometimes laugh and keep her in a good place. 

Sorry, I wandered!  So, I know it's 10-15 minutes from time to get her ready for bed when she starts asking (or demanding on bad days) "Where do I sleep?" in between every "What day is this?"  When the sleep or bed questions take over - it's time.  If I go too soon, she will fight me and bedtime is not any fun.  If I read her correctly - it's kind of sweet - like putting a toddler to bed.  A toddler who is learning to put on their own pj's and brushing their own teeth.  So many similarities in taking care of mom and taking care of a 2-year-old.  And it really helps when I think of it like that.

We are getting close to bed time - probably 12 minutes until time to officially start the process.  So off I go - another day in the record books.  Good night

Thursday, July 25, 2013

Moving Meditation

When I was working in Lexington we had a unique gentleman who wanted to teach moving meditation for us - he was willing to explain, train, market, recruit participants, etc - he thought he had just what the doctor ordered!  He sat down with me one day to tell me how I could make moving meditation a part of my routine and all the benefits I would reap if I would only commit to this for a 6-12 week time period....

...I don't think we ever hired this guy, but probably twice a year I think of what he said and play around with the idea of working what I recall of what he called Moving  Meditation into my days.... yesterday I found the perfect setting for MM!  swimming laps in the pool (I am up to 20 laps - Yay me!).  Okay - pick a focus point or focus rhythm point - the blue tile at the entry end of the pool that is lightest in the middle and darker in a circular pattern around and the blue tile on the lifeguard side that is lightest on the left side, getting darker as you move right - both at eye level.  Now - pick my meditation.  It started out as "silence, peace, faith, silence peace faith, sil...", you know what I mean!  Then I realized "integrity" was missing.

"silence, peace, faith, integrity"

another lap and a half...but what about "grace"?

"silence, peace, faith, integrity, grace"

close, but not quite...relax your facial muscles, Lisa or you'll waste all your energy on your face and not be able to finish....what is missing?, what would make this perfect?  "silence, peace, faith, integrity, grace"

JOY!  All too often the missing piece of a caregiver's life/days/minutes/conversations/thoughts.

"silence, peace, faith, integrity, grace, JOY!"

I have no doubt the lifeguard was wondering what was making me grin every sixth stroke, but I just couldn't help it.  Peyton has a stuffie - a big pink monkey - named Bubbles and we decided it was nearly impossible to sound angry when saying the word Bubbles.  Try it!  Well, same for internally chanting the word JOY - you have to smile, even when you're swimming laps and so tired not much is smile-worthy!

No idea if MM is going to be a long-term part of my life - in this form - because really, it's just praying and that will always be a part of my life.  BUT - I'm going to keep using it in my morning swims just for the joy of JOY and the reminder of integrity and silence and the comfort of peace, faith and grace.

Mom is settling in - and I guess so am I!  Beware my next posting...things can change on a dime..."silence, peace, faith, integrity, grace, JOY!"

Tuesday, July 23, 2013

Potato Chip Dance

Thanks you Classic Lays - tonight the kids and I did the potato chip dance for mom.  No, there is no such thing as the potato chip dance...because there is no earthly way we can recreate it ever again!  But she ate her sandwich (grilled ham and cheese with LOTS of butter!) and all her chips and then asked for seconds of chips. 

Both kids got wide-eyed - because mom eats like a sickly bird these days - and I said "I KNOW!" so of course mom asked "what?" and I told her we were excited that she liked the chips and that if she ate them all I would be so happy I would do a potato chip dance.

She ate them all - and I think swiped a licked finger across the plate for all remaining crumbs! - and the kids were quick to point out that I had to do the potato chip dance.  So the Lays chip bag and I danced and the kids joined in and mom smiled - really smiled. 

Who doesn't love a Potato Chip Dance!?

You've GOT to be kidding me!

Last week I met the nicest woman from the Alzheimer's Organization who runs a program called REACH - all about caring for the caregivers.  She gave me some great information and some great resources...but are they really great?

How is it that a disease that effects over 5 million people in America can have so few grant- or government-funded programs?  Obviously the foundations that are run by the wealthy - who must have no idea what it is like to not be able to pay for care - put their money behind cures and research and other diseases that have touched them.

Anyway, there is a program out there that is supposed to provide affordable respite care for dementia patients only to find out that it is really designed for the physical not the mental.  How is it more dangerous for someone with physical limitations to be alone than it is for someone with advanced dementia to be alone?  "Prompting", she says, "doesn't qualify you for care."  I was blown away!  Mom can't answer or dial a phone, can't operate a tv remote, can't put her dentures in without my help, can't cut her own food - not because she doesn't have the strength, but because she can't remember how.

I also know I downplay a lot of the things I do for mom, because she's my mom and it doesn't seem like that big of a deal, so maybe I don't adequately communicate mom's physical needs.

On the plus side - the woman who called was able to ask me the right questions and uncover a way to qualify me for the program.  BUT - the program is only for 6 months and after you have completed the 6 months - you can't requalify - you our banned from the program for 12 months.  Really makes you think - do I want the freedom now just to have some freedom and sanity for my family OR should I wait until mom gets worse and I NEED the extra care and her physical abilities have deteriorated past where I can care for her?

Now is not the time for me to solve this, but I feel sure my future after mom has passed will involved trying to find funding or a solution that will provide sitter services for dementia patients so families don't have to make really tough choices through no fault of their own.

Monday, July 22, 2013

Is today the beginning of the "new normal" or is it just Monday???

Today we were back at it - full force.  Conditioning camp for Murph, laps in the pool for me, Ballet Intensive for Peanut, speech therapy and a bath for mom.  I also knew I had 2 errands I have been putting off for these past few weeks and I was determined to accomplish at least one of them today - to avoid the nagging inner voice that comes to visit about bedtime on days when I cave and don't do what needs to be done!

So off I went - even when mom looked at me with her "please just stay here with me" eyes.  The Speech Therapist - who I adore! - was just getting started and I had to get my oil changed and my transmission flushed...if they are going to charge that much for it, I would prefer they call it something nicer - perhaps something spa-like!

I can't tell you how thrilled I was to accomplish this one little thing...not quite as thrilled to fork over the $300, but hey, maintenance is cheaper than a new vehicle, right!  And speaking of maintenance - I had some time to kill and all my WWF buddies must have been doing real work leaving me with no moves to play, so I picked up a magazine and there were all kinds of suggestions on diet to aid in memory health.  Many mentioned Alzheimer's - that's the kind of maintenance I am willing to invest in!

Bring on my next errand...a trip to the grocery!  I got everything on the list and several of the things mentioned in the article.  Concord grape juice, seeds to sprinkle in my salads and on cereal (sunflower and flax), blueberries (although they are always on the list this time of year!) and organic strawberries.  I will also be trying the 12-hour daily fast.  Nothing to eat for 12 hours each night.  I guess if I mess up one evening, I will just eat breakfast at 10 the next morning.  I was thrilled to see full-strength coffee on the good list - I got a nice Italian Roast for good measure!

My point in all this is - I cannot be with mom 24 hours a day, 7 days a week.  I can't!  So I need to do what needs to be done.  There is no chance she will understand or learn to understand.  I can only hope she will get used to it, it will feel more right than wrong.  I am trying to keep some things consistent - her meal times, her pills, her bed time and what time I get her up to start the day.  I can't tell you how much I wanted to sleep in on Saturday.  I never want to sleep in, mostly because I am not that good of a sleeper, but last Saturday, I was CRAVING sleeping in.  Maybe one day that will be something I can let go of too.

Maybe later this week (tomorrow, perhaps?) I will reschedule those doctor's appointments I had to cancel.  Because really, if I'm not here to take care of her - who will?

Sunday, July 21, 2013

If I keep this up, I can join the circus!

Today was a day of juggling - lots of things to do, lots of places to be and lots of organizing to accomplish it all. 

You see, I dream of being the mom who creates fond memories for her children - many moons ago, Keaton did one of those little fill in the blanks booklets for me around Mother's Day.  You know, my mom is _____, my mom loves ____ and my mom likes to WORK!  Out of the mouths and pens of babes.  I decided that day/month/year to try and do a better job of presenting myself as a less work-obsessed, more well-rounded mommy!

Anyway, fast forward to these past few weeks and then multiply it by the guilt I feel for bringing mom to live with our entire family.  (I wouldn't think anything of it if it was just me, but it's ALLLLLLL of us!)  So, I am constantly having this internal conversation with myself..."why don't they understand how difficult this is?"  "why should they have to suffer and change their entire lives to accommodate mom?"  "she really needs to stay on her schedule."  "this is our home and my kids get to live in their house and play in their house and watch their shows and play their music..."  "I may have to curb some of their activities to find a balance."

This weekend the kids point of view won the internal battle and I gave them their privacy on Friday night to watch their channels and play music and take over the kitchen table with crafts while Mom and I watched "West Side Story" in her room.  Bless Peyton's heart - she kept wandering in, wanted to watch with us and wanted to share the things she was doing with us, but mom just doesn't have it in her to be interested in anything that isn't about her.  And then yesterday, we had one of Peyton's friends over (which turned into a sleepover) and then one of Keaton's buddies showed up to play video games.  It threw mom for a loop - who were all these people and why did they keep coming in to interrupt us?  What was all that noise in the other room?  What's so funny?  What? What? What?!

The evening ended with them getting invited to Jason's to swim - would I handle that - they probably wouldn't be home until after mom was in bed and they hadn't eaten.  I made a picnic - packed coolers with sandwiches, chips, cookies, ice, drinks, cups, napkins and a beer for me - well-deserved, I might add!  Then I sent texts to inform them of their need to be quiet coming home and that dinner would be served upstairs.  It worked!  I had to be pretty creative to find enough places to hang all the wet swim suits and beach towels and goggles (also quietly!).

Then this morning, Keaton had a baseball game in the far reaches of McKinney and had to leave right when I get mom up.  Tiptoeing, organization, multi-tasking - filling coolers and water jugs while scrambling eggs and making coffee and answering the morning's barrage of questions.  Success!

Then I had to get myself ready to go watch part of the game and prepare my daughter to fix mom's lunch and help her with her exercises and leave without mom losing it....what channel and what time for her to watch the Open, how to fix the microwave pizza that mom likes and why I only put half on the plate and why there needs to be 3 items included in the lunch offering, not one and not two and certainly not four...unless the forth is a pill or a dessert item!  How much time they should spend outside, how to answer the questions she will probably ask, why she needs to look her in the eyes, speak clearly and call her Grandma EVERY time she talks to her.

Then I planned the schedule of texts home to encourage and check, made sure I was taking the right pictures, getting a bit of sun since it feels like I haven't been outside for weeks!, cheered on the team, picked the right and hopefully quickest way home, got Peyton to accomplish her list of activities with mom so she could invite another friend over...whew. 

And then, how to answer the inevitable question..."Did you go someplace today?"  There is no right answer - and there are no clear cues on what reaction the truth will get - it's a crap shoot. 

Finally, we are home, coolers are emptied, trash is out, everyone has eaten, dishwasher is unloaded and reloaded, lawn is being watered, recycling out, kids are showered, Peyton's play date is in its last 30 minutes, dog has been exercised, bits of life have been picked up and put away, mom's laundry is in the wash waiting for this last outfit to be taken off, lights are lower, fridge is cleaned out, evening pills have been given and we are starting the "What time is it?...Is that where I go to bed? ... Is it time for me to go upstairs (an old reference to Meadowlakes)? and I am feeling pretty accomplished.  I don't believe I have lost my temper once today or been ugly to anyone.  By the way - the QOD is once again "Lisa, what is today?" and "I wonder if Lisa is going to come and get me for anything today?"  Sigh...oh well, If this whole caregiver thing doesn't work out - I can get a job juggling with the circus!

Saturday, July 20, 2013

An Alzheimer's WOW moment

You think you understand what short term memory loss is until you spend 24/7 with an Alzheimer's patient.  This morning mom and I were sitting at the kitchen table having breakfast.  She sits at the head of the table so she can look out the window into the back yard and doesn't have to be sitting right across from anyone - it's a bit too much for her.  Anyway, I had the sprinklers on really gently watering the flower beds and I could see her really concentrating on something was the water...was it raining?  was that even water?  She finally asked "Do I see water out there?" and I said yes, I was watering the flower beds. 

In the seconds it took her to look down at her plate to take a bite of food, she forgot.  We had a variation of that exchange 7 times in the next 10-15 minutes.  WOW!

Friday, July 19, 2013

Smiles in the morning!

Today is full of smiles - mine, believe it or not!  Is today a better day or am I just better prepared? better rested? better centered?  I took some time to go back to living thankfully last night and that is always a key to my contentment and positive why can't I go there every day, every minute?  That's a questions for another day.

I stayed home from the pool this morning thinking it would be important for me to be home in case mom woke up early today like yesterday - she didn't.  I believe she can sense when I am in the house or near her.  And it makes me smile to think that I can have that kind of relaxing/calming effect on anyone!  Just ask around - I am not the calmer - I am the make-you-crazier!  Anyway - that's smile #1

I decided to make mom ham and eggs this morning as a nod to my daddy's breakfast specialty - thought it would be a good idea to have his spirit with me to start this better day - that's smile #2.

Murph started watching an MLB Bloopers show he had taped and it made us ALL laugh out loud - I call that smiles #3, #4 and #5!

Mom is sitting with me in the red room just enjoying looking outside and Peyton is singing at the top of her lungs in the shower - it's not so much a song as it is just some random thoughts she is having set to her latest made-up pop tune - complete with Christina vocal runs!  and that is smile #6 - and it's not even noon!

God blessed me last night with a decision to enjoy a moment with my family and not worry, the choice to stay up past my bed time and watch an action film with the kids even though I was tired and the complete disregard for our tight budget to turn the AC down to a very comfortable sleeping temperature and I have been rewarded with His Grace and a lot of smiles!

Alzheimer's still sucks, but today I am smiling through it!

Thursday, July 18, 2013

Alzheimer's IN YOUR FACE

Today has been a bad day.  Great plans, on schedule, but it just hasn't flowed right and even though Mom has no idea what is supposed to be happening or what day it is (the QOD for yesterday BIG TIME!) or any other details of her life these days, when it's slightly off I think she senses it somehow and it makes everything ugly.

I got home 5 minutes early from the pool this morning, but it was 5 minutes late to mom.
I decided to go ahead and start the morning routine hoping to save the day, but that ship must have sailed.
I made her favorite breakfast today...but she ate it with her mouth curled in disgust.
I laid out her favorite shirt and she asked why the heck she had to get so dressed up.
I told her she needed to make her bed and she became a helpless victim who was being tortured by the evil lady (that's me) that was forcing her into this hard labor.
I took my box tops outside to work on so we could sit outside and give my family some private time in their home and it was too damn hot.
My daughter tried to play one of the memory games with mom and she snapped at her and made her cry.
I invited mom into her room to give everyone some space and she was MAD.  She said things that broke my heart - things that made it clear she doesn't know who my family is and doesn't care.
Mom has always been self-absorbed, but this phase of her personality is really dark.
I made her lunch and she asked if she always ate this much - it was clearly enough for an army.  Must be that army from A Night at the Museum!!
It's been shaky ever since...
And I can explain it to myself and to the kids and be kind to mom through it all, but today I am annoyed as heck.  I am sick and tired of her whining.  I am sick and tired of her absolute need for everything to revolved around her.  And I am down right mad at the fact that she could care less about her grandchildren.  That she makes disgusted faces when they try and tell her a story or get her to watch a show or video they love or when Peanut wants to show her one of her dances or new outfits or something she made.  And today I have been so dumbfounded by the fact that my sweet dog can curl up next to mom or bound in to see her and mom doesn't even reach out a hand to pet her or smile at her unfailing love for her family - and that includes mom.  It's not mom's fault - I know that.  But I can't help but remember what a good friend told me about her experience with Alzheimer's - the patient is like wine and whatever the grapes were like that went in (how the person was in their youth) just gets magnified or more intense with the progression of the disease.
Today I am seeing that in mom and it is IN MY FACE.  It doesn't change the fact that family is family and we do what we need to do every day.
I feel sure I will need someone to care for me at some point unless there is a breakthrough (which I pray for daily...hourly) and this will help me plan and help my children learn.  But today Alzheimer's is all up in my stuff and I have the attitude to prove it.  I resent this new part of my life most when Patrick is off - I want our family time back.  I don't want to have to explain why something is sweet or funny or why someone is sleeping in or still in their pj's.  I want to go have lunch and drag around Target and look at the fish and hamsters at the pet store and spend a hour in Academy or half-price books.  I want to eat at 7:00pm - something fun we saw on Food TV that is spicy or unusual or over-priced or deep-fried.  I want to be able to leave stuff lying around on our family day - but we can't...because anything out of place baffles mom and then that's all she can talk about, ask about, hint about (don't let anyone tell you Alz patients lose their ability to manipulate) and complain about.  Finally, it seems like a joy to clean everything up and put it away so we don't have to explain the out-of-place things over and over.

Today has been a bad day.  But tomorrow will be better, God willing.

Tuesday, July 16, 2013

More lessons to learn...

I am amazed at how much I am learning about caring for mom, finding my patience, organization, understanding and all the other things that are becoming part of my day-to-day life.

I thought:  mom will love to go places with me
I learned:  mom does better when she stays in one familiar place

I thought:  mom will eat her meals with us
I learned:  "us" means too many distractions for mom which causes her not to eat, so she eats at her "regular times" and just with me. "us" eats later

I thought:  mom would enjoy classic tv shows (MASH, MTM, Any Griffith)
I learned:  shows with plot are too difficult to follow - she likes to watch golf or tennis or the weather channel

I thought:  mom would always remember me
I learned:  I am quickly becoming her "momma" - she knows it's me, but she doesn't get what me means

I thought:  mom would enjoy familiar activities
I learned:  the fear of not being able to remember is a joy-sucker

I thought:  mom would enjoy telling stories from her childhood
I learned:  talking about the past makes her think it IS the past and she gets confused about who is alive and how old she is

I thought:  I could keep up a strict routine
I learned:  Life has other ideas

I thought:  Sophie would always make mom smile and feel special
I learned:  Mom gets so caught up in her quest to figure out what is going on that nothing, not even a big white fluffy dog, will make her smile or relax

I thought:  Herr basic manners and upbringing would always be a part of who mom is
I learned:  getting old is some kind of "get out of jail free" card to belch, toot, moan, growl, clean your dentures at the table, pick your nose and talk about things that no one talks about in public

I thought:  I would find time daily to use this blog to chart, vent, share and remember
I am learning:  15 minutes is better spent taking a shower or a nap!!!

Monday, July 8, 2013

Questions = Reality

Once a week is not enough reality to realize the reality of living with Alzheimer's.  I mean, I saw mom for short bursts at her retirement community 3 days each week, talked to her every day, but we only really spent the entire day together on Sundays.  She came to our home every Sunday at 1:00pm and stayed until 7:00pm - because routine was (and is) all important.

We noticed her short-term memory loss and answered the same questions over and over.  We even noticed a pattern in the questions she asked.  There were mostly comments when I picked her up - the way she insisted that I look at her junk mail no matter what else I was doing.  I could be in the middle of changing her bed and she got it in her head that the junk mail HAD to be a priority.  BUT I couldn't ask about the mail until she brought it up.  I thought I could avoid the interruption by going through it as soon as I got there - but that was wrong!  So on good days, I made a bet with myself how long until she brought up the mail - would it be when I was changing her bed or when I was filling her pill box or gathering up her laundry?  Would it be when I was gathering up her trash or restocking her cabinets?  On bad days, I challenged myself to stand firm no matter what I was doing and remind her that I was in the middle of something and not jump to deal with the mail until I was good and ready.  The problem with that was - she can't remember that I am in the middle of something or that I even mentioned that I was in the middle of something and so she continued to hold out the small stack of insurance and hearing aid and political bits of mail for me to go through.  The game was a much better idea for both of us!!!  Mom really looked forward to getting mail - it was a big deal for all the residents, but when she started hiding things and we almost missed a really big thing, I had to have most of her mail sent to me.  I guess that's why the bits she got were so important.  I think they made her feel like she was still in charge.  I can go days without getting the mail...I don't need a stack of paper to remind me how much I am responsible for and nobody writes letters anymore. 

Sundays also brought a QOD (Question of the Day) - that one was asked repeatedly during her first couple of hours at our house - the frequency depended on how many people were around.  There were the TV questions - mostly asking "who is that man/woman?" when a familiar actor or athlete came on TV.  The dinner questions - "Now, do I have anything I need to worry about this week?", "I just love your big did you find this place?", "Is there anything I am supposed to do or didn't do?".  As dinner was ending we always got "I love coming to your house to be with you and the kids...the worst part is that I have to go home." and "Is it almost time for me to go home?".  The saddest questions of all were the drive back questions, "Now, I live up on the 3rd floor, right?", another round of "Is there anything I need to worry about this week?" and although not really a question, "I don't know how you came to bring me to this place, but I am sure glad you found it...I am awfully contented."  I could measure her level of insecurity (and how far I needed to walk in with her - just to the lobby or all the way up to her room) by how many times she asked and which of the questions/statements she focused in on.

Now that she lives with us the reality of the questions is the reality of our days.  What will cause her the most distress frames the QOD...what day is it?  Do I need to go upstairs to my room? where am I? have we had dinner yet? are you my momma?  was I married?  why did I come to live here?  is Lisa coming to get me today?  where is everyone today?  are you going to leave me?

Many of the questions are posed in an almost angry, negative way.  I guess because she's my mom, I just roll with it, but the family finds it pretty upsetting.  We don't know exactly how to deal with it - is it too unkind to make a joke of it to get through (never so she can hear, but just as a coping mechanism)?  Is there any reason to talk to her about a better way to phrase things...that's what you say to a child, not to a grown woman.  I feel sure she senses every eye roll and they are almost involuntary about 3:00pm when she is getting antsy and after dinner when she is going to the not-so-fun evening place.  Can I just not answer if I've reached my limit - she won't remember.  I spend 30 minutes to an hour each day looking up info on Alzheimer's to be better prepared to handle this new reality...I've picked up a few helpful ideas, but it sounds like each person is unique.  I love unique - I just need to remember that and be thankful for whatever the day brings...because I am 100% sure there is a reason I am in the middle of this new reality.

Friday, July 5, 2013

Independence ironic!

So weird to be celebrating Independence this weekend at the same time I am watching mom give hers up... I spent time on the phone with the Alzheimer's Association REACH program director this morning and she said there is a good chance that mom will be able to get comfortable in this new environment providing she gets into some kind of routine... THERE'S the rub.  How to get into a routine when it's a holiday weekend and nobody is keeping any kind of regular hours AND I am trying to get through all the evaluations for all the different kinds of therapy and assistance mom may qualify thankful that mom's PT knows her Aide and OT - they are going to coordinate and just let me know when they are coming!  Silver Lining!

Yesterday started out so beautifully - mom was in good spirits, she had PT and seemed to like the therapist (she has had her before - she didn't remember her, but she connected to her in a very positive way!)  We had a big cookout at lunch since Patrick had to work last night (go figure?!, the new guy getting stuck with 4th of July closing duties!) and that seemed to make her happy - she even ate more than 4 bites.  She got very comfortable on our couch and smiled a good portion of the morning/early afternoon.  She did ask me 3 times if I was "her momma"...picture a 4'10", gray-tight-permed lady in a dress, knee-hi's and sensible shoes...nope, not me!...but even when I told her I was her daughter, she smiled.  We were hopeful.

She nodded off for a nap (refused to go back to her room...come on AT&T - we need that cable!) on the couch about 3:00 so the kids and I got a puzzle out to encourage her to sit up at the table and not just lounge all day.  Bad idea!  Seems to have made her mad.  I even let her jam 2 or 3 pieces in the wrong spots so she felt like she was part of the fun.  I don't know what changed her mood, but she went to that place that I don't understand - but fear like nobody's business!  She had anger, she behaves like a victim, she feels sorry for herself, she uses words like stupid and dummy and idiot and it breaks my heart.  When she gets in that place she is, as we say here in Texas, UGLY.  She is short with the kids (I don't think she knows who they are when she is in her dark spot, but she clearly knows they are family, because she doesn't put on the pleasant airs she saves for guests), she adds this growl to her voice when she speaks to me and she develops the sore back syndrome.

SBS is our cue that mom is unhappy or angry.  She can go for hours or days without mentioning her back, but when she is unhappy she uses this as a reason to not do her therapy exercises or to not eat or to not listen to an answer she doesn't like to a question she really doesn't want to know the answer to.  It's a tough one - and I still don't know how to respond.  I suggest stretching, I have said maybe she slept on it funny, I have offered to rub her back, I have tried to get her to go for a walk and the most effective technique - talk about the weather.  I am sure I will figure this out with experience and more help from others who are going through the same thing.

And then the thing that made me saddest yesterday - we took mom to see the fireworks at Trophy Club.  She was excited to go, she managed the drive up in pretty good spirits, she was like a child during the first 5-10 minutes of the show and then she just put her head down.  When it came back up she was so agitated.  What were all these people doing here?  How was I ever going to find my way home - she was sure I had gotten us lost!  What were the kids saying in the back seat - very accusatory (they were saying "oooohhhh!  ahhhhhh! - all the things you are supposed to say at the fireworks!) and it got worse as we drove home.  She was lost, we were lost, she didn't know where the hell she was, she didn't know why all these cars had to be on the road, what was that sound (my phone going off), I hope you know where you are, I sure as hell hope you know how to get me home...  It was awful.  I tried to talk about the fireworks, about the 4th of July celebrations in her hometown, about going to see the fireworks at the Lima Mall when I was little...she couldn't be distracted from her sense of being lost.  I think it was mostly tired.  another new caregiver question - what's the risk/reward for keeping someone out a little late to see fireworks or something else that she will enjoy!  Good Grief! The silver lining...I think she actually remembers going to see fireworks last night and she doesn't seem to have any recollection of the fear or anger.  I'll take it!

So, a quick recap for my memory (since I am probably the only who will ever actually read this!) on the past couple of days.  Wednesday's QOD was "Is there anything going on around here tonight?" (thus the puzzle and download of big band music) and yesterday was a Peg's Man Crazy Day.  It's something that has always kind of made me sad or frustrated about my mom...she will drop anything (including me) for a man.  She wanted to talk about her husbands - but not ABOUT her husbands - but about how lucky she was to have husbands.  Then she talked about how she probably wouldn't have any luck finding a husband "in this place" - the kids got a kick out of that.  And at one point as I was showing her a pair of new sneakers I thought she might like, she said what she really wondered was if she could buy this male model...ick!  I know it's mean to say Ick!... but ICK!  He was probably 25 years old and he may have even been attractive - I'm sure he was - he was a model, but ICK!  I couldn't even look...and now I obviously can't buy her those sneakers!!!  I guess I will have to cut out the foot picture the next time!  Or just bring home the shoes...will it just create more confusion for her to have different shoes...she really needs new shoes - especially with all this therapy she is doing and the fact that she is out and about more now that she lives with us, but what's worse...less supportive shoes that she knows or more supportive shoes that are strangers?

Who knew that my spare time would be monopolized by questions like that?

Today has been a nappy day - too much, I think, but who knows?  Not me.  Not yet.  Not giving up though!

Independence - today it meant putting the denture cream on her teeth without my help and getting her shoes and socks on by herself.  She also found the bathroom by herself and was able to reach the water glass and take a drink (she still asked me to get it for her and got snippy when I asked her to do it herself, but hey! she did it!).  Tomorrow it may mean something else - hopefully a bunch of things.  Another silver lining - I am a lot less likely to complain about having to do things - I am thankful that I CAN do things.  Today I nearly rejoiced as I was putting laundry in the machine!

Tuesday, July 2, 2013

Fight night

Good heavens, tonight mom and I had our first fight!  She had this huge day of appointments and therapy and she was worn out by 4:30.  Her nurse told me that its totally normal for her to be tired and fall asleep often and the rest will be good for her recovery.  I also know that if she sleeps all afternoon and evening, she will be up all night - which means I will be up all night.  So I created things for her to do so she would stay awake - we had a family dinner,  I got her in the car and we took Murph to baseball practice, we drove the LONG way home and I found an oldies station and I tried to get her singing, I made her ice cream and peanut butter (my best trick to get protein and calories in her) and we went all out on the bedtime routine.  I even kept her awake all the way until 9:00!

Peyton and I were out in the family room - she had a movie on, I was doing laundry and here comes mom and she's MAD!  No way to know what she thought was or had happened, but she was agitated big time.  She told Peyton she just "had to get out of that room", "if she didn't get out of there she was going to lose her mind" and she plopped down on the couch.  I tried to tell her she needed to get her rest, that she needed to get a good night's sleep and that she had only been in bed for 15 minutes...she wasn't having any of it.  She was determined to stay up and Patrick and Keaton were on their way home from baseball.  I asked mom to put her robe on if she was going to stay out in the living room and she refused.  Mom, who used to be so independent, will find a way to not move whenever possible.  I know it's because she's tired and confused and hurting, but I also know if I do everything for her, she will let me and I will lose that much more of her.  I can't imagine the limitations on her once she becomes wheelchair bound...

I asked her again to put on the robe and she told me to just throw it over her...her nightgown ( her fave) lacks a little something for public viewing!  I expect to wear whatever I darn-well please when I am 85 as well...but not in front of my guys.  Don't get me wrong - they can handle it - but it would make Murph a bit uncomfortable.  She got so angry with me after asking her again to stand up and put her robe on and then telling her I would prefer she put her robe on since the boys were coming home... She stood up, but not to put the robe on...she stood up, called me bossy and stormed out of the room....well, as close to storming as you can get in a pink nighty with a walker!  I told her she could be as "pissy" as she wanted, but she still needed to put on the robe!  It wasn't the correct response, but I had obviously depleted my patience for the day!  She got back in her room and I could tell she felt did I.  I try a hundred times each day to put myself in her shoes and imagine how scared I would be to not know where I was or why most of the time.   I just wish she had the trust in me to know I wouldn't let anything happen to her and that I always am trying to do what's best for her...but the reality is, that's not the relationship we have.

All ended well, I found my patience, mom

Day 6

Busy day already!  Peyton had to have 3 teeth pulled  and she needed both of us with her...they were baby teeth, but she was nervous.  So, what to do about mom?  Well, enter Keaton - amazing son/grandson.  I made mom's breakfast and set him up with the fanciest pop tart breakfast plate ever seen in our household and he stayed with G.Peg while we went to the dentist.

They were fine, but in true mom fashion, she did exactly what she wanted and not what he suggested..but that just means mom isn't wearing any makeup today and that's cool by me!

Then her PT showed up and she was awesome!  She was great with mom.  She found a lot of weakness in her legs, some balance issues and a lot of weakness in her right arm, but we start regular therapy first thing next week.  Mom hates to exercise, but she loves a visitor, so that's what we will focus on.

I'm off to have lunch with some fabulous friends (that's Patrick and Keaton) and then it's OT and nursing this afternoon.  Ready to get her on a schedule.

By the way - no QOD has presented itself today so far!!!!

Monday, July 1, 2013

Day 5

Today we are off to a better start - mostly a result of me making myself go to the Pointe and work out.  I am a much more patient person when I get that hour to myself.   I was amazed that not a soul had woken up by the time I got home...that was a blessing beyond measure.

Today's QOD looks like its going to be "are we going to go downstairs for anything?".  It's a reference to going to sit in the lobby at Meadowlakes with a bunch of the other residents.  I can't imagine how much mom misses the socialization.  That doesn't change the fact that she couldn't remember how to put in her teeth by herself today or that she dropped the first two of her pills into her water glass instead of putting them in her mouth.

The home health aide will be coming by at 3:00 today and the Physical Therapist will be doing a new evaluation tomorrow.  I am waiting on a call back from the social worker - that's the appointment I am most looking forward to - see what our resources are.

How about that?  Kevin, the social worker, just called and is coming to meet with us this evening!  Yay!!!