Best present I ever got . . .

As I sit with my last cup of coffee this morning, I am reflecting with beaucoup gratitude to my brother and sister-in-law for the gift they gave me yesterday.  My phone rang around 10 a.m., as it usually does.  Tom was at mom's place and he said to me, "Kathy - guess what - YOU GET THE DAY OFF TODAY!"  He was going to spend the morning with mom, and his wife Julie, who is off work this week, would take the afternoon shift.  I was overcome!  Holy cats, an entire day all to myself with no care duties!  What would I do?  Where would I go?  It took a few minutes before common sense kicked in and I decided to take a dry run into downtown Erie to make sure I could find my new doctor's office before next month's first appointment.  And while I was in Erie, I could (wait for it) SHOP!!!  And shop I did.  Found the office, then got a little turned around trying to get out of the city, lots of one-way streets in there.  But then I found the Erie City Mission store, where I bought a beautiful sweater and a new belt.  Then to Gabriel Brothers (sort of like a TJ Max) where I bought brand new winter boots with heels!  Then to the big Salvation Army on Peach Street where I scored a Jamestown NY Harley shirt.  Finally on the way home, Julie called - she had managed to get mom into the shower and into clean clothes.  AND did a load of laundry.

This is the sort of thing that makes me so grateful for my family.  So many caregivers have to do all these things themselves, but I have help.  And God knows I need it.  Today will find me back at the mom's, and maybe I can get her to take a ride with me - she was complaining about her grey hair to Julie yesterday, so perhaps we'll go pick out a color she likes and give it a whirl this weekend. 

I also have to thank my friends who are still in touch via phone and email and who talk me through the dark days to better times.  I'm holding all of you (and you know who you are) way up in the light.

Here's a picture of Butterball, who took control of the blanket that my wonderful niece Michala made for me for Christmas.  As soon as I get some pics from relatives, I'll put them out here too.  Thanks again my friends.

 

A bit of holiday stress . . .

So, even though mom seems unaware of many things these days, she is cognizant of the fact that Christmas is, if not here right now, just around the corner.  One day last week, it was decided by default that we should celebrate Christmas on Christmas Eve day at mom's.  For the next two days, she did nothing but obsess about what needed to be done and why we weren't doing the usual celebration at my brother's house.  Eventually we stopped mentioning it, and unfortunately it's going to be a surprise when everyone shows up on Friday.  We all know who will get left to deal with the aftermath of what will likely be an overwhelming event for her. 

On Sunday, she got a case of the giggles over who knows what?  I still don't know, but I did get a picture of us while she was in the throes of that episode.   Monday I brought over a couple of gifts to be wrapped (for niece Michala and nephew Ryan).  I unrolled the wrapping paper and handed mom the scissors.  She did a fair job of getting it cut, then as I enfolded the boxes in the paper, she handled the scotch tape.  Hardly any of it ended up where it would hold the paper in place, but she felt a sense of accomplishment nonetheless when they were done.

And here is where this blog, aka talk therapy, comes in.  Sometime mid-afternoon yesterday, mom asked me to come into the bedroom.  She wanted me to make sure that she was getting into her bed correctly.  She actually did a couple of practice runs to make sure it was ok the way she was doing it.  Now I'm scared.

To top off a stressful Monday, the doorbell rang and I answered it to find a neighbor who was looking for a piece of missing mail, perhaps it had been delivered to mom's by mistake.  It hadn't, but I was the one who made the mistake of telling mom what the visit was about.  Off we went on a rant that lasted for over an hour about how this could have happened, did she think that maybe she had gotten the card or letter and thrown it away, what if the police came and asked to search her house and on and on and on and . . . well you get the picture.  Just before my patience reached its end, I pulled my cell phone out of my purse and had an imaginary conversation with the neighbor.  I told my mother that the neighbor had just received the piece of mail and that all was well.  The relief in her face was palpable.  She was so glad she didn't have to worry about it anymore.  Now she could sleep at night (provided she gets into bed correctly).

So, to end this very long post, just let me say that I am pretty sure that this will be the last Christmas that mom will be able to participate in even peripherally.  While I hate to think that's true, I also can't wait for it to be over.  Thanks my friends for reading and for holding me in the light.  Please hold me way up there . . .

Ups and Downs

Well, this one has been percolating for a week or so, and now it's time.  First, a recent down.  On Monday morning, Butterball and I tangled up on the way down the stairs at 7 a.m.  I landed hard on my right shoulder and was pretty hurt.  I thought I might have torn something (rotator cuff?) so I had brother Tom take me to Urgent Care.  They did ex-rays, script for nsaids, made me an appt. for the Orthopaedics in town for Wednesday morning.  Butter was unhurt in the accident.  (That's the up part of this.)  The other up is that the shoulder was badly contused, but no tears or breaks. 
Here's another up/down.  When I got here in August, mom and I were able to share our jeans.  We were a 9/10.  Jeans is all she will wear, so it was all good.  Unfortunately, mom has been eating really well since then.  We moved to size 12 for her (I've gotten really good at guessing her sizes at the goodwill/thrift stores) and we've been ok for the last couple of months.  However, lately, I've been having to push her down on the bed to get the 12's buttoned.  She always laughs when I do that, but it's not going to be easy to continue this unless we go to 14's.  Sometimes I joke with Tom that mom will be one of those people who has to be removed with a crane when she dies.  It's really not a laughing matter, but I think we are all trying to make her happy and food does that for her.  Chocolate especially.  Do we deny her that?  I don't know. 

OK, last UP/Down for now.  I often drive up the hill to the Salvation Army store in town, sometimes in search of something in particular, sometimes for fun, sometimes to entertain the mombat.  In any case, I've become friends with one of the women who works there.  Her name is Bonnie.  Bonnie has had some car trouble and has had to take the bus to work for the past month or so.  Problem is that the bus only goes as far as Wal-mart.  Then she has to have someone from the SA come to get her for the last 1/4 mile to work.  I ask after her situation every time, and every time, she says that her mechanic is still working on it.  It's been more than a month.  So today, after mom and I had lunch with one of her HS worker-friends, we went up to the SA.  I searched in vain for some jeans to fit mom, meantime, Bonnie came down my aisle and handed me a card.  She wished me a merry Christmas.  My quandry is this.  I could likely help Bonnie with some cash, but should I?  I have relatives who think it's a good thing to send money to some far away country, buy a cow or sheep or chicken flock for someone in Africa.  But hey, here is someone right in front of me who could use help.  I'm going to have to give this some thought. 

More to come.

First Big Snow and other events

So, the dreaded big snow has finally found us.  Mom has been obsessing about it for 6 months now, so she has been vindicated I guess.  This is a shot of my across-the-street neighbor's driveway.  If she could get out in her little 2 wheel drive Toyota, I'm sure my new CRV can handle it too,  I had a remote start installed this week, so I'm feeling pretty smug about being able to warm my ride without even stepping foot out the door. 

I've been spending lots and lots of time with the mom, yesterday I put in a good 7 hours.  I arrived with stuff for her crock pot, which hasn't been used in the last several years.  She washed the appliance while I browned the chuck roast, then we loaded it up and cranked it to "high".  And of course she worried about it being on all day long.  "Shouldn't we turn this down" or "off" or something, about once an hour.  She has a real "thing" about using electricity, because as we all know, she doesn't have any money.  This litany has spilled over into Christmas concerns too.  There was a time not so long ago that she would hand out envelopes to each of her children and to each of their spouses and to her grandchildren.  Those envelopes contained $500.  Now she is adamant that only the grandchildren will get money, and $20 will have to be enough.  All of us reassure her that we don't need money, that she needn't worry about Christmas, and that everything will be alright.  And we all know it's just a symptom of her disease.

Last Sunday while she and Ed were out for the afternoon, I went out and bought a lighted holiday ribbon, took it over and strung it along her mantle.  She was thrilled with it.  A couple of days later, she decided that it would be ok to go upstairs and bring down her little fiber optic tree.  And she is thrilled with that too, as she is every year.  I used to have a couple of different fake trees, but had to give them away after Butterball proved to have quite an appetite for them.  She would chew the branches and then throw up on my bed.  So, here is what we have now.  And we love it.

I'm squeezing the most fun and pleasure and love out of this holiday season as I can.  Cause, as you may have read in one of my previous blogs, you never know when "the last time" might be.  Blessings to all of you, my friends. 

Out of the Barrel but Still in the Funhouse

So, this week found me in the barrel again, because my brothers and I didn't include the mom in the funeral festivities surrounding my dad's older sister Nellie.  Mom almost didn't find out about it, but one of the brothers mentioned it.  And because I was within striking distance, I got the brunt of her anger.  She was pretty pissed, because, as she says, "They are my family too!!!".  And in hindsight (God, how I hate hindsight) she was right.  She would have remembered the cousins and probably some of the others in attendance.  It just seemed at the time that she wouldn't have tolerated the long drive or the long service.  Our mistake.  However . . .

After a day or so, the water in the barrel went down.  I went this afternoon to spend time with her, and immediately upon entry to her house, I was led to the bathroom for a serious discussion.  It seems that "those guys out back" had stolen the spindle that holds her toilet paper to the wall.  NOW WHAT WAS SHE SUPPOSED TO DO?????????  Those Goddam guys anway.  After entering the kitchen, I saw that Brother Tom had left me a note, which to my dismay had me rolling on the floor.  Of COURSE it was me who had stolen that spindle! 

Anyway, off to Big Lots we went to find another spindle (an 80 cent expenditure).  It took her nearly 35 minutes to get it out of the package and onto the fixture with toilet paper, but she did it.  And then lamented that she just couldn't afford to buy one of these things every day.  She is certain that when this one comes up missing, she is finally going to call the police.

I'm so clueless about how to handle these things.  I always reassure her that I know how concerned she is about her safety and about "those guys out back".  I always offer to move in with her and stay.  I often suggest that if her fears get worse she can always opt to move to another location.  But all of these suggestions are still met with negative responses.  I think this winter is going to precipitate some drastic changes, whether she and I like them or not.  It's hard for me to wish for an "event", but I do anyway.  A bout with some sort of sickness, or a trip on the stairs, something to transition her into a care facility, which will take the pressure off of her and off us.  I guilt sometimes in the middle of the night about these things.  We all know how this is going to end, and it won't be a good end.  Eventually, she is going to forget more and more, even to the point of not knowing how to swallow or eat or get to the bathroom.  It is taking a toll on my brother Tom and on me.  I am sometimes filled with resentment that so many of mom's good friends have simply written her off or don't find time in their busy schedules to spend an hour a week with her.  Something to break up the monotony of her counting the hours in her day.

I'm not very good at being maudlin, but I'm pretty good at knowing what's coming down the road.  Another few Christmases, and that's it.  My retirement now isn't what it's going to be after that.  I want palm trees and a Harley and some fun and excitement, I would love to wade out knee deep to catch my lunch.  Before I forget why I waded out knee deep in the first place . . . more later of course!

Sometimes I feel like an idiot

But in a good way.  Yesterday was such a good day.  I spent it with brother Tom.  We went car shopping together.  I so seldom get to spend a whole day with him, and we had a really good time.  We drove up route 20 through Girard and Fairview, stopped and drove a Suzuki (small, fun, affordable, and the salesman was really cute), went all the way to Peach Street, drove a RAV4, wasn't very impressed, then stopped at the Honda place, drove a CRV, and I really liked it.  Wound up walking away though, because the salesmen weren't willing to bend much. 

Today I went to mom's and got her washed and dressed for her afternoon with her friend.  Then I took off for the laundromat, where I did a couple of loads of laundry.  Read the paper while I was there and spied another CRV in Edinboro that I hope to take a look at this week.  Then I went back to mom's and took advantage of her absence to do her laundry and some cleaning and also cleared out a bunch of drawers in her bedroom.  I swear there were at least 187 pairs of socks in there, most of which had no elastic left in them.  Ran into a couple of stashes of chocolate, which I left where I found them.

When I got home, Butter and I sat out on the porch together in the sun, even though it was really freaking cold, and then we went in and put clean sheets on the bed.  Here is where we sleep; guess which pillow Butterball sleeps on.  

The quilt is one mom made for me some time ago.  She made one for every one of her family members.  Mine is predominantly pink, and that always kind of grated on me, because she knows that pink is one of my least favorite colors.  But she must have known that I could never give it away.  She was so talented when it came to sewing and creating things.  I remember her making us mother/daughter outfits when I was little. She used to knit and crochet too.  None of those talents were passed to me.  But I still have the quilt.

So, anyway, the reason I'm feeling a little like an idiot is that I am pretty content.  I love taking care of my mom, even though some days I think I will pull out my hair.  I have such a sense of satisfaction when she looks good and laughs and has a great day and I've managed to do some things that will make her life easier.  If this makes me some sort of simpleton, then so be it. 

I will leave you with a picture of Butterball, who has a penchant for wanting to play in the empty clothes basket.  I like making her happy too.   I'm holding all of you , especially my good friend Todd, in the light, as my Quaker girlfriend says.  And Butter says, "Hi."

In the Barrel

Well, this is a pretty descriptive picture of mom.  She is but a shadow of her former self.  The title of this entry describes how my brothers and I feel when one of us becomes the target of mom's anger.  And we all get a turn in the barrel. 

Wednesday morning at mom's was unremarkable, it's one of days when I go over and try to get her in some sort of shape for "date night" with her friend.  She is usually pretty amenable to my suggestions of washing her hair and changing her clothes (though I don't think she will get into the shower again till spring).  But for some reason, this day was different.  She took great offense at my suggestion that the clothes she had on should be changed, and when I pointed out the spillage on her shirt, that's when she invited me to leave (after throwing her house keys at me).  So I did just that.  It wasn't the first time I'd been invited to leave, so I didn't really give it much thought.  Usually when I go back an hour or so later, all has been forgotten.  This time, though, when I came through the door at noon, I had morphed into a monster who had stolen her fudge, and she was very distraught at the sight of me.  I didn't stay, and instead left her in the hands of brother Mike, who fixed lunch for her and found the fudge where she had hidden it in the microwave. 

I always try not to take these incidents personally, but it's always hard when you think your mom hates your guts.  So, to end on a better note, I went back yesterday and all was well.  We got the hair washed and the clothes changed and had a really happy day.  Wonder who will be next in the barrel . . .

Friends and friends and MORE friends!

Those of you reading this likely remember my friend and former boss, Nina.  Nina did a wonderful thing this month - she invited me and two of her other friends, women I had never met, to visit her at her home on Cape Cod.  We all have many things in common, not the least of which is our love for Nina.  But to hear her tell it, we also are very strong-willed, independent, and intelligent women who have in one way or another faced great adversity in our lives and have overcome it or have come to terms with it.  We all four are the better for our trying times.  I made new friends yet again, thanks to Nina's generosity of spirit, friends for life, I think.  As a side note, we spent a lot of time at the beaches, attended a great Oyster festival, and ate like pigs every single night.  What a great time I had!!!

I've also been appreciating the friends who have left such uplifting comments on this blog for me to read and re-read, especially if I've had a trying day with the mom.  Those friends are also friends for life, even if only via cyberspace.  Sandy and Sue especially, thank you for your prayers and support.

So, the mombat was overjoyed to see me upon my return from the Cape.  It was the first break I've had from her since mid-August.  I thought about her every day, but was secure in the knowledge that brother Tom was doing a great job in my absence.  Mom is still losing ground daily, but remains adamant that she will never leave her home, and that if anyone tries to "put her in a home" she will "run away from home."  Straight from the horse's mouth, I guess.

I'll end this now but will be back soon, I have much more to say.  So here's a picture to make you laugh.  Aren't we a couple of pearls?

Strange Partings

I know, I know, I keep promising more pictures.  Unfortunately, the only ones I've taken recently were from the Pumpkin Festival at Conneaut Lake Park.  That being said, I had a great Sunday there, spent an hour watching an artist carve an alligator from a log.  He was awesome.  I also met an amazing woman while out on the deck by the lake, she was traveling alone from Chicago, flew into Pittsburgh, rented a car, and was touring around just for shits and giggles.  I saw her sitting alone and asked her to join me for a beverage.  We had a lot in common, and I hope I'll hear from her once she is settled back into the Windy City.  There were about a million bikes there (Keystone Riders) too, and I enjoyed looking at all the pretty rides.  I sure do miss Hoss.

So, back to my title.  I haven't really been on-site here in Meadville for more than a day or so at a time in the last 16 years.  My job in Buffalo kept me at what I considered a good distance.  In the past, when I would do a "drive-by" and stay with mom overnight, I was always up and out early, headed back to my real life in Buffalo.  Now, I'm a daily part of her life, and she is a really important daily part of mine.  So, leaving her today was bittersweet, and we both shed some tears over my impending 4 day vacation to the Cape to spend time with girlfriends.  When I asked her what she wanted me to bring back for her, she said, "Just bring YOU back to me."  I'll miss her a lot lot lot.  Go figure.

Happy Days

So, yesterday was a very long day for this caregiver.  Mom's friend had called me on Tuesday evening to say that he and mom had been invited out to some old friends' house in the country to spend the day.  He was going to pick her up at 9 a.m. on Wednesday.  Even though this friend said that he and their friends would be happy to take mom "as she is", I felt like I should go over early and make sure she was dressed in something appropriate and that her hair was combed.  So, I shagged out at 6 a.m., showered by 7, and was at mom's door by 8.  She was ready by 9, when her phone rang and her friend said that the day had been "called off" because of the rainy weather.  He hoped he hadn't ruined anyone's plans and would be by to take mom to dinner, as he always does on Wednesdays. 

I usually try to give mom her morning space, let her get up and make her breakfast and take a pill if she remembers, before I show up after 10 or so.  In this case, the day was cold and rainy for the most part, and we wound up spending the entire day together.  We did lunch at Wendy's, came up to my place for a cup of tea and to pet Butterball (she and Butter get along so well!), then went home and got her hair washed and curled for her dinner date with her friend. 

And then I got my prize.  Just before I left at 4, as we were sitting on the couch and holding hands, she turned to me and said, "This has been a really happy day for me.  Thank you."  If someone offered me a million bucks to trade that moment, I'd have to turn it down.  What a great -no- HAPPY day for me too.

Life's Been Good To Me So Far

OK, so I'm a Joe Walsh fan.  Who isn't?  James Gang?  Eagles?  You catch my drift.

I have been thinking lately about all of the things I've learned about my mom and about Alzheimer's Disease, and about how much I DON'T know about either.  Here are some of the things I've learned:

With mom, it's all about humor and touch.  Mom responds so well when I'm upbeat and happy and singing and acting, and for me that seems to come naturally.  I was always at my best in front of 10 or 15 people who never touched a database and who didn't know that a couple of hours with me having fun with Access and Excel might change their lives for the better.  I thrived on seeing the lightbulb come on in at least one person's eyes.  So, now I've changed roles and stages, but I'm still "on" in every sense of the word.  Keeping her from sinking into a deep despair sometimes is hard.  Today she really got upset about "those guys out back" who come in when she is sleeping, even when the doors are locked, and they take things or move them around.  It was hard to get her re-directed.  It was kind of a rough afternoon for her until I presented her with the big chocolate bar that I'd sneaked in earlier.  She's a tough student sometimes.

Yesterday, as I finished washing her hair and was strutting down the hall singing and shaking my ass, she started laughing (as she invariably does), and she said to me that she thought I needed "a psy-  . . . a psy . . . a SWINK"!!!  And that led us both to nearly falling on the floor together.  Those moments are treasures.  And if only I had had my camera, once we got her hair dried and into the hot rollers, we went down to sit on her front steps.  "Her" cat (a visitor that she feeds and pets and loves and worries about") came up and crawled into her lap and proceeded to knead his razor-sharp claws into her legs as she petted him.  Didn't have the EasyShare, but it will remain in my memory forever - or until I become a victim of this awful disease.  Those are the humorous parts.

The touch part is new to me.  Mom and I were never very physical with one another, but circumstances have allowed us to become more so.  How could they not, when I am learning to be the major caregiver in charge of personal cleanliness?  Never thought I'd be helping mom with her shower, or telling her to "wash your hoo-hoo" (I had to point, but she got the gist). But the best parts of the physical relationship is that I get to hug her and scratch her back ("Oh, that feels so good!).  We hold hands when we take walks, or put our arms around each other.  Lotioning her up after she acquiesces to the shower and hearing her sighs of pleasure.  I so enjoy the rituals we're learning.  Washing hair isn't a chore, it's a labor of love.  You know how nice it is to lean back in the hairdresser's hair and she actually massages the potions into your scalp and makes you feel relaxed?  We do that, only she is leaning forward.  Drying her hair with warm air (and the occasional surprise blow of the dryer down her shirtback, letting her hand me the pins for the hot rollers, and when we take them out, letting her put the rollers back into the setter, trying to get the small, medium, and large rollers onto the right spots. Celebrating the success of doing that right. 

OK, this has been a long post, but overdue.  Pictures next time I promise.

Whoopsie Daisy

This will be a short post, cause I'm not sure that I am all wrapped around it yet.  Yet another interesting day in the life of an Alzheimer's stricken person and her family I guess.

My mom's sister arrived for a short (3 day) visit with Shirley.  Mom was ready and had been anticipating the visit for the last few days.  We thought.  Marilyn arrived with her son Dale around noon today, there was a lovely sort of reunion, and my brother and I enjoyed spending time with cousin Dale, who is a tall and handsome and successful family guy who lives in Ohio.  After Dale left for home, mom and auntie and I went for lunch and to the grocery store for staples ("banamas" and such) and once we got home, settled in for a visit.  Sometime mid-afternoon, the mom started to get a bit agitated (not so unusual in my world anymore), so I took her for a walk.  During said walk, she told me that she didn't know the visiting person, that she didn't remember having a sister, and that she didn't want the woman to stay at her house.  I thought that we had prepared Marilyn for the possibility that Shirley might not suddenly know who she was, and Marilyn thought she was prepared for that too.  NOT!!!

As it turns out, when we got back, Shirley told her sister that she didn't know her, that she didn't want her to stay, and that "everything was perfect until this happened".  Marilyn was pretty upset, as well she should have been.  I certainly recall the first time that Shirley asked me why I called her "mom".  I shed tears for days after that.  But, one becomes inured, I guess.  Anyway, Marilyn called my brother Tom who came to get her to take her to a friend's house for the night.  Shirley and I will drive up there and have lunch with her tomorrow to see how the situation might work itself out.  Shirley felt pretty bad about making Marilyn cry, but hey, it is what it is.  I'll probably add to this tomorrow, so stay tuned.

Settling in

So, just a little over a month since I've been here and visiting with mom every day.  We managed another shower yesterday (woo hoo!!!), and it was much easier since my brother Tom put a shower chair in the tub and replaced the showerhead with a hose/wand.  Clean and lotioned from the skin out, I know Shirley felt good.  We had a great day, lunch at Wendy's (we split a salad, she had a chocolate Frosty), a trip through Big Lots, not looking for anything in particular, just using up the afternoon, then a visit to my house so she could pet Butterball.  Then I came home and had dinner and a really pleasant phone conversation with a new friend who I hope to meet over the weekend.

Today it's raining and cold, so I'm going to the Albion fair with a girlfriend.  Wait till you see those pictures!

Hot Spots

So, another week has passed, though weekends don't mean what they used to for me - or for mom either, I guess.  I've been trying hard to learn where mom's hot spots are - those situations or conversations or activities that make her angry.  One, I learned last week, was about her housekeeping abilities.  I mentioned to her one day that I wanted to wipe her refrigerator down - that there was something sticky on the shelves.  She immediately went on the defensive and asked me if I thought she had a dirty house.  I responded as calmly as I could that, no, I didn't think her house was dirty, that I just wanted to take a minute to clean up the fridge.  She stormed out of the kitchen, and just as I was finishing the job, she came back in and said, "If you think my house is so filthy, you can just get out of it and STAY OUT!!"  So I did.  Hot spot indeed. 

I found another button not to push yesterday when I brought my laundry over.  I got hers and mine together and in the washer, then as it was in the dryer, she said to me, "I don't know how to say this to you, but I don't think I want you to do your wash here anymore."  She went on to explain that running the washer and dryer added to her ("you know, that thing I get every month") bill.  Then she said, "I feel like I just said something wrong to you."  Having learned to try not to take things personally, I said to her, "You know, you made a good connection there.  Running the appliances does use electricity, and that costs money.  So I can take my laundry to the laundromat from now on."  Then I let it drop.  I won't do my laundry there again unless she is absent from the house.  I don't really mind going to the laundromat, anyway.  Good opportunity to read a book.

So, that's what's been happening this week.  She knows my name now, almost every day, that it's Kathy.  She doesn't connect me with being her daughter, though.  Matter of fact, she keeps trying to fix me up with her youngest son - my brother.  That's Mike and mom below.  Next week, mom's sister is coming for a visit from Florida.  I'm sure I'll have a lot to write about when she's gone!

Baby steps

Though I can't be sure, I think this picture was taken out at my paternal grandfather's house out in Pageville.  Obviously mom was very young, still in her 20's I think.  She had 4 little kids by then, and obviously liked her sweets as much then as she still does today. 

I took another baby step this week by following the instructions in the Alzheimer's book and getting mom into the shower.  It was amazingly easy, so much easier than I imagined it was going to be!  Simple straightforward instructions had her following me into the bathroom and taking off one article of clothing at a time, and then into the shower she went.  We got her all lathered up, rinsed off, and out of the tub in a matter of 5 minutes.   I thought I was going to get a fight from her about the process, but as usual, I was projecting, not doing.  So now that we've done it once, I won't be so anxious about doing it again.

On another note, I have to say that I visited a lovely retirement village only about 5 minutes from us called Juniper Village.  I met some people who were in the same situation as I am, and they placed her mom there a year ago.  The woman, according to her family, was pretty unhappy at first, as you can imagine, but after a couple of months has begun to blossom under the care of the staff and the company of others.  I am absolutely certain that my mom would do the same if we were to place her into a good facility, but, just like the shower, it's the anticipation of the difficulties in the path that keeps me from moving forward with what I think would be best for mom.  I have to remember that we are all taking baby steps here.

Mom's Refrain (or "SSDD")

I wrote a poem the other morning about the things I hear day in and day out.  Here it is:

Can't find my keys, lost my purse.

Sure is hot, but cold is worse.

My kids are thieves when they're not drunk,

They steal my stuff and move my junk.

The pills don't help, my words won't come.

Can't sleep at night, my brain is numb.

I think there's someone on the stairs.

My flashlight shows there's no one there.

And I don't have any money.

Learning Curves

Each day a new beginning . . .

So, on Tuesday, I visited the local senior center to see what sorts of activities they might be able to offer me and mom.  They have a beautiful new facility with exercise machines and a lunch room, a craft room, computer room, classes to take in each of these, and home cooked lunches daily for only $2.  It doesn't cost anything to register either!  What a great thing, I thought!  So, I brought the mombat down with me that afternoon and got us both registered and signed us up for Wednesday lunch.  I made sure mom was up for accompanyng me to exercise class and lunch the next day, and she appeared to be ok with it.  WELL . . .

She came with me all right, but instead of joining me and the other three people for some stretching exercises, she sat stoically in a chair against the wall with a frown on her face, refusing to join in.  After about 20 minutes, the set ended, and I went to sit next to her to ask if she would join in on the next set.  She said, "I refuse to participate in this, I get enough exercise with my walking and housework.  You need to take me home and then you need to leave me alone!"  On the way home, she turned to me and said, "I think I've earned the right to sit in my own house in front of the TV if I want to."  I agreed that she had, dropped her off, and went to Wal-Mart and bought a rake.  I worked off my frustration by cleaning up my yard. 

I think maybe mom has been a little overwhelmed with all the attention she's been getting from me and from my brother and sister-in-law.  Once school starts, Tom and Julie will be going back to work though, and won't be around as much.  Mike (other brother) will be returning from a job in CA at the end of August, and I hope he'll do some back fill for me.  I learned at the Center that an Alzheimer's support group meets once a month on Monday evenings, and I plan to get involved there. 

My learning curve is a big one.  I think it's in direct proportion to mom's forgetting curve.  YIKES!!!

Hard question

It's been almost a month since I've posted.  I'm mostly packed and mostly moved to Meadville, all I have to do now is secure a lease and key to my house.  I'll likely be a Meadvillian in another week to 10 days.  Scary.

This is going to be a short post, but I have to write this down so I don't forget it.  As my brother was bringing in my mom's medications on Sunday morning, I asked him:  "So tell me again why we want to slow the progression of this disease?"  Do we really want this phase of my mom's life to last 12 or 15 years, instead of 8 or 10?  What would she want?  What would I want in her place?

So those are the thoughts I'll leave you with today.  I'll let you know when we come up with an answer.  And I'll bet I'm not the first caretaker to ask these questions . . .

Luck

So, this morning as I was riding my bike in to work, I was thinking about luck.  Having finalized my retirement paperwork yesterday, and having heard from so many people that I'm "so lucky" to be retiring, I started to wonder about just how lucky I am.  As I passed the handicapped spaces near the doorway to our building, I remembered how often I thought "how lucky that person is to have a designated spot for them, especially in the cold Buffalo winters."  Now, how silly is that, to envy someone who likely has a disease like MS or an issue with breathing that doesn't allow them to walk far?  And of course, that made me think about my "lucky retirement."  How lucky is it that I will be giving up a good job where I am challenged daily, a sweet little condo that I've grown to love, friends that I may never see again, only to have to jump into the role of full-time caregiver to a woman who is headed toward infancy even as she grows older? 

But fortunately, luck often translates for me to blessings.  How blessed I am that I can afford to retire and move to Pennsylvania. How blessed to be able to take part in my mom's care?  To bring my kitty with me so that we can make a new life, maybe get a new job, make new friends, grow into a new role?  I guess I am, after all, a pretty lucky person. 

"Last Times"

I’ve been thinking a lot lately about “last times.” For instance, because I will be moving from Buffalo to Meadville in August, I know that I’ve purchased toilet paper in Buffalo for the last time. Garbage bags too. Hmmm. But in some instances, you just don’t know when it might be the “last time.” The last time I made love with someone I cared about deeply, I didn’t know it was going to be the last time. I don’t know if the next time I pet my kitty or hug my mom, it might be the “last time.”


Life seems so tenuous, unpredictible, fragile sometimes. I’m starting to appreciate the little pleasures more now, be more grateful for the blessings I have – and I have so many! Good friends, great family, financial security, dependable car, food to eat, roof over my head, and some faith and hope that some of those “last times” are a ways off yet.

Here’s my plan: next time I pet my kitty I’ll pet her for an extra 5 minutes. And next time I hug my mom, I’m going to hold her a little more tightly and for a lot longer.

In her heyday

So, I have been reading (again) and considering replacing mom's regular tea bags with decaf, and her sugar with Splenda.  She drinks a lot of tea, and has been putting 4 or 5 teaspoons of sugar in each cup.  I think the replacements might help her to sleep better.  As it is, she wanders around the house most of the night, (which might explain why she "sleeps" in her clothes).

I came across this photo when I was home last, and had Rite Aid scan it in for me.  She was a looker, wasn't she?  Still is.

She loves me, she loves me not . . .

Well, another visit with the mom last weekend, and even more lessons learned.  I've been reading everything I can get my hands on about AD, but none of it so far has prepared me for the surprises that keep popping up my our lives.  The one I just don't know if I'll ever get used to is the one where suddenly she has no clue who I am.  Any attempt on my part to convince Shirley that I'm her daughter brings on a bout of anger and frustration on hers.  So, from this point on, I think I'll just try to be objective about "Kathy" when her name comes up and I'm the "unknown".  And I'll try to say good things about "her", even when mom doesn't agree that there is anything good to say.

After I put down yet another AD book last night, I kept thinking that no matter how hard this is for me, it has to be so much worse for Shirley.  I can't imagine how terrifying the journey down the dark road is for her.  To lose her friends, family, sense of self, to forget how to make a cup of tea or how to wash your own body.  To know that in the middle of the night, there will be scary men appearing at her bedside and to think that they want to hurt her.  Keeping scissors and knives under your pillow to battle these monsters. 

So, I will do the very best I can do to protect her from the scary guys and to help her with the daily tasks that overwhelm her for as long as I can.  I'll be the best hand-holder I can be.  Thanks for reading.

Who Am I?

Another crazy weekend is behind me.  Good weekend? I don't know, I guess I'll have to figure out a sliding scale to determine that sort of thing from now on. Saturday with the mom and the rest of the family (May is birthday month) was ok, we had hot dogs and hamburgers and birthday cake out at my brother and sister-in-law's place. Afterwards, Mom and I spent the afternoon together walking out at the dam. 

Later that day, a small catastrophe struck while we were doing a load of laundry. She had turned on the tv, but the remote came up missing. YIKES!!!  We looked high and low, and she eventually (as she usually does) tried to blame my brother for taking it ("He takes things, you know.) Anyway, I zipped down to CVS and bought a universal remote. Took me half an hour to program it, and she didn't like it because it was different, but it worked.

Catastrophe two happened Sunday morning when she came out of her bedroom and asked me who I was and how I got into her house. Absolutely no recognition at all. So after I told her who I was (and she denied it repeatedly), I told her that I would take a shower and leave, and she agreed that was best. When I opened the drawer in her bathroom cabinet to get the curling iron out, lo and behold, there was the remote. I initially thought to go get my $15 bucks back at CVS for the universal, but instead decided to put it away, cause it will undoubtedly happen again. I did manage to get her outside for a little walk before I left, and she was feeling a little better about me (whoever I was).

It's going to take me some time to get used to being a stranger in my mom's eyes.  I can see how upset she is when she can't make a connection, whether it's recognizing someone, finding her purse, or trying to put a name to an object.  She knows that something is wrong with her, and she can't figure out how to fix it.  All we can do as a family is to put our arms around her and reassure her that everything is going to be ok.  And I really hope it will be.

Parenting My Parent

I got to thinking on my way back to Buffalo yesterday how this walk down Alzheimer's Avenue is going to be alot like becoming a parent to a small child.  The questions repeated over and over, the imaginary friends (or strangers), the made-up stories, the bathing and grooming chores, the clingy behavior.  And because I made a concious choice many years ago to remain childless, there is some small resentment building in me that "parenting my parent" is going to be a big part of my foreseeable future.

On the flip side, there is a part of me that is beginning to take satisfaction in my ability to learn these new chores.  I'm getting more comfortable curling and combing mom's hair.  Cleaning her house (little by little) and making things better for her - healthwise at least.  Buying groceries.  Helping her choose which clothes to wear.  Holding her hand as we cross the street.

All those things she once did for me.  Funny how the wheel turns.

the saga continues

Well, this evening after work, I'll be packing a few more boxes to take with me on Saturday morning.  I'm presently trying to move some things every time I drive from Buffalo to Meadville in advance of my permanent move in August.  I'm storing these things in mom's basement until I decide whether to rent a place or buy something.  Initially, I had hoped to be able to move in with mom so that I could be there for her most of the time.  However, the thought of sharing her home and giving up her independence makes her very agitated.  She just doesn't want that - yet.  And maybe she will never want it, but I think the brothers and I know that the time is coming when she will be unable to be left on her own for any significant periods of time.

I'm leaning toward buying a small house near her, something with at least 2 bedrooms, so that she and I can decorate one for her to use occasionally.  If she becomes comfortable in my home, it might be easier for her to one day move in with me.  That way, brothers and I could get into her place to clean it up (she has really become a terrible housekeeper), and maybe to get it on the market eventually.

Well, here's hoping that when I walk in tomorrow morning, she'll know who I am!

The Awakening

My name is Kathy, and this blog is about my mother and our family's journey with with her through Alzheimer's Disease. Let me tell you, we're only a few months into it, and it's truly a trip.

I have three brothers who are at present doing what they can to step up and help with mom's daily living, and I am planning to retire from my job at the University at Buffalo in order to move back to Meadville PA to take my part. I'm sorry to lose the job, I enjoy what I do at UB. I'm sorry, too, to sell my sweet little condo where I've been content for many years. But I'm blessed to be able to do these things so that I can help my mom walk this difficult path.

Early in 2009, my brothers and I began to notice that mom was a little "off". She was forgetting where she had put her purse/keys/shoes/gloves/head. Other signs appeared gradually. She started to opt out of hosting family gatherings. Her cooking skills diminished. She had minor a fender bender. Then another. And finally the one that led to her diagnosis. I got the story secondhand from my brother that she had bumped into another car and then left the scene. The police were called by a witness and they caught up with her at another location. Shortly after that, brother Tom made an appointment with her to see her physician, who did some light testing, made a referral to a neurologist, and told her that she shouldn't continue to drive. More tomorrow!