Sunday, November 30, 2014

need prayer regarding exercise

I'm really worried because Mommy has had a stiff neck for two days now and is not at all cooperative when Amanda and I try to massage her neck or help her stretch.  She is having trouble drinking because it hurts to tip her head back.

At night, she uses the bed rails to pull herself into a "neck scrunched to the right position," and sleeps that way, making her neck twisted and stuck in that position.  She is VERY resistant to changing her position when she gets herself pulled into place. She's been doing that since she came here, but now since she's been sleeping so much it has become a worse issue - as she scrunches up this way in both the bed and in the recliner.  Jeanie made her a neck pillow to help her keep from getting this way, but she's somehow figured out how to scrunch with the neck pillow - no matter how tricky I try to position it or prop her with pillows.

Tonight, I've put the bed all the way down and she is sleeping without scrunching herself up into that hunched over position at the moment.  (She can't do it when the bed is flat.) She doesn't like to be all the way flat, but I don't see how to make this problem better if she doesn't change her sleeping position.  Lying flat was suggested in the pdf of Alzheimer's exercises that Jeanie sent me.  It was suggested as a way to relax the neck (lying flat for 20-30 minutes).  I'm hoping that it will work, and that all night will be even better than 20-30 minutes, or at least will have no adverse effects.  I'm going to bed in a few minutes, and she's sleeping soundly now so the bed won't be raised up until I get up in the morning.  (Unless when I get up to visit the bathroom and check on her, she's awake and uncomfortable - then, of course, I'll raise the bed.)

I haven't ever been making her lie flat because she complains so much about how it hurts her when I lower the bed to a flat position.  (It's so very hard to figure out when to be firm for the sake of Mommy's health or when it's OK to let her say she won't do something.  I am a real pushover - you all know that - and I just want her to be happy.  I HATE making her upset in any way.)

I'm very worried, because I've done some research and learned that what she is doing will cause contractures - getting stuck in that position and being unable to straighten out again.  These are a real problem with people with dementia, and I don't want Mommy to end up so pulled into the fetal position that she breaks her own bones.

Remember when Mommy used to say that if we kept that frowny face, our face would get stuck that way.  I guess in the case of muscle contractions that has a terrible truth to it.

Physical therapists have tools they teach to caregivers to prevent these, but I haven't learned them yet.

Prayers appreciated.

Lion Hunt?

Last night we read aloud together in the living room, and in a break with the poetry and stories, I did a short lion hunt with Mom and Amanda.  But, I couldn't remember all the things Mommy had us do when she lead the lion hunts.  Anyway, I'd like to relive that.  Mommy was such a great lion hunter.

I've been remembering a lot of things she did, and celebrating her amazingness with my own memories.  Like, lion hunts and her reading stories I wrote in "cursive" squiggles before I was even old enough to know how to read.  I remember her playing "I see something . . . "  I remember her making math worksheets for us to practice school with.  I remember her sewing up books I wrote to make them into real books.  I remember the doll's clothes, and the clothes she made or remade for us.  I even think I remember riding in the snow on a shovel she was pulling.  But, I'd have been so little then, that I must only remember her telling me about it.

I remember her lying in bed with us when we were very, very small and singing us lullabies.

But, I don't remember the lion hunts very well.  I remember we used to do lion hunts sitting in a circle outside in the evening in the summertime.  Do any of you remember them?  We sat cross-legged and using our hands to slap on our legs we "walked" through the jungle, and passed through plains and crossed bridges, or - when there was no bridge - using our arms to air-swim, we crossed rivers. Then, finally, after much traveling, we'd see the lion, and for some reason, we'd have to turn around and run back home - remembering and repeating everything we did in order to get there safely, and slam the door just before the lion caught us.

I'd like to do a proper Lion Hunt with Mommy.  Her eyes twinkled while I did my shabby one yesterday, and a proper one would be an amazing achievement.  Can any of you help me?

As far today goes, Mommy has slept most of it again.  She woke this morning, and had her fruit and vitamin and then she fell asleep during her oatmeal.  I just spent oven an hour in there reading aloud, and she didn't wake up during it.  Sometimes, if I read, she wakes up, but this time she's just too tired.

Saturday, November 29, 2014

Doesn't she look like Grandma O'Connor!

I don't suppose this is the most flattering of pictures, but I thought she looked so much like Grandma O'Connor that I wanted to share it.  NOT that looking like Grandma O'Connor is unflattering!!!!  By no means!!!!  But, the expression is a funny one that I loved to see on Grandma's face just as much as I love to see it on Mommy's.

This morning, I overslept.  Mommy was awake when I came downstairs just after 9:00.  Amanda had already checked on her once, and Amanda had asked, "Do you want me to turn the light on for you, Grandma?"  And Mommy had responded, "You can do whatever you want, but if you want to leave it off, that's okay."  So, Amanda left it off.  The sunlight through the curtains was giving off a dim light, and it was enough for Mommy to look at the pictures in the Little House in the Big Woods book.

I turned on the light when I brought her the vitamins crushed in a little applesauce and the regular (not ruined by vitamin bits) applesauce.  It was the homemade stuff that I made yesterday.  I was inspired to make applesauce by Aunt Bonnie, and I think I might ask her for her recipe as I wasn't very happy with this attempt, but Mommy ate it without any complaints.

Then I gave her a couple spoons of Tylenol.  I don't think it's helping the pain any though, so I might stop giving it to her.  A medicine that doesn't help and might hurt (on a daily basis) seems pretty stupid to me.  Once she is off the blood thinner, she can take aspirin again.  And, once she gets moving the pain doesn't seem too bad at all.  It's just those first few minutes of moving to get up and to get out of bed that are really painful.

After I waited for the Tylenol to ease the arthritis pain, I sat her up and lifted her to the commode.  I'm using the method Jeanie used instead of the lift belt.  (If I remember what Jeanie told me correctly), and it's working really well.  It's much easier to lift with the lift belt, but Mommy is so afraid of the stupid thing that its very appearance defeats its purpose.

While she sat on the commode, I washed her (including hair).  Mommy LOVES the hair dryer.  She was very pleased when she saw "that thing" ~  I think the warm over her is like a massage.

In the picture above, she is eating her oatmeal (with prunes instead of raisins this time).  Even though she seems really regular, and she went this morning, she told me while she was on the commode that something is stuck in that thing back there and it hurts.

Jeanie has suggested that I try to find old Ranger Bill or Children's Bible Hour episodes for her to listen to, and in a few minutes, I'll see if I can do that, and take the computer in there for her if  I can.

Like every day (so far) after she's slept the whole day before, she's perky and happy this morning.  It looks like it's going to be a good day.  :-)

Edit (addendum):  As if to make a liar out of me, when I finished the above post and went in the room, she was sound asleep with her head slumped forward.  I got the neck pillow that Jeanie made her, and I positioned it so that she was leaning on it, and, of course, she woke up, and she said, "Oh, that's better."  Then I got her a blanket, and put it over her, and she gave me the most beautiful smile before she drifted back to sleep.  Then, as I was going out the door, she woke a little and said, "Thank you, Laurie." Oh, how I love it when she knows me!  This horrible disease steals so much from her, and from us as we miss her, but it gives little reprieves here and there where she remembers - where her brain works.  I just love when that happens.

Friday, November 28, 2014

Boy, she woke up hungry!

I love it when people like the food I cook.  I especially love it when the people who likes it is Mommy.

At 5:30, I woke her to ask if she wanted to taste my fresh applesauce.  She had a few bites of it, and then I asked if she'd like some oatmeal.  She said yes.  She ate the whole bowl.  Then I said, there's split pea soup out there too.  Would you like some. She did, and she ate a bowl of that.  Then she had a slice of apple pie, and when I asked if she wanted another one, she did.

In a few minutes, I'm going to take some pudding in there.  That will be Greek yogurt mixed with a little brown sugar and vanilla.  Mommy and I agree that it is better than ice cream.  I won't be at all surprised if she eats a whole bowl of that too.

It goes to show that if a person sleeps all day, they've got to eat enough to keep the body going in just few hours, I guess.

She's also listened to half the book of Little House on the Prarie, one chapter after another after another.

I guess the sleep did her good.  :-)

Had a Happy Thanksgiving

But!  None of the pictures turned out.  And, I was just doing things and stuff and only got a few of those bad pictures.  However, this proves that Mommy was here and we did have turkey.

She was up almost the whole day long, and we had a nice meal.  Albert came to see her and had Thanksgiving dinner with us.

edit (adding a picture)
I decided that this pic isn't so bad, and I've added it.

After dinner, we watched Miracle on 34th Street, and we visited for a little while.  By 6:00, Mommy was ready to head to bed, and she has slept most of today.  She didn't wake up until after noon, and then I gave her fruit, vitamin, and Tylenol.  While I fed her, I read to her from Little House. It was the chapter where the whole family got malaria, and she seemed to really be understanding and following.  I went out after that and made her oatmeal.  By the time I got back in there with it - less than a half hour later, she was sound asleep.

She's been asleep every time I check on her since then.  (I check on her every half hour.)

Does that mean that you will get a well-thought-out and beautifully written blog update?


That means I ran around trying to catch up and did a quick trip to Aldi (while David listened for Mom), and made pickled eggs, and split pea soup, and a tiny batch of applesauce.  No blogging.  Just living.

Pete, that's a one gallon jar there.
Might even be worth a plane ticket to Pittsburgh.
(Although, the chances are good that Stephan will scarf them all.)

Wednesday, November 26, 2014

Thanksgiving Yummy Stuff

1:18 - Apple Pie is in the oven.  Mommy is still sleeping.  I've decided to just let her sleep straight through until 4:00, and then I'll turn on her sunlamp, and I'll see if I let her sleep uninterrupted for all those hours without any trying to wake her up, if she can wake up for real and good at 5:00 instead of 6:00 today.

Plan change.

2:00 - Pumpkin Pie is in the oven, and Mommy is awake.  I guess that changes plans from a few minutes ago.  I heated up and spoon fed her leftover quiche from Stephan's breakfast (which if full of spinach!), and she loved it.  YaY!  While she ate, I read to her from Little House on the Prairie. David came in and sat to listen with Grandma for a few minutes. That was really nice.

3:00 - Gave Mommy some cranberry juice and water mixed, and she drank all of it.  It was just a small juice glass.  I have been giving her several of these through the day.  I stopped trying with the straw because it frustrated her, but I need to be more speedy with the refills.  She hasn't gotten enough liquid these last couple days.

I also gave her oatmeal, and she has been eating it herself with the American Girl and Little House propped to one side.  She's reading and eating and perfectly content!  I tried to help her sit up and not be hunched to one side, but she is determined to lean back over.  She asked me, "You don't like the way I'm sitting?" and I said, "You just look so uncomfortable,"  And, she insisted that she was comfortable, so I stopped putting in more and more pillows to prop her up.

For the picture above, I kept trying to get a good picture.  A good picture is one that doesn't have her squinting at the flash or looking as severe as she should in an 1880 daguerreotype.

So, for this picture, I said, "What are you supposed to say?  Cheese!  Say cheese?"  And, she did, but it doesn't really give the appearance of a smile, does it?  ;-)  She looks cute and very engaged in the world though, and I think that shows her mood this afternoon perfectly.


She loves the pies!  I took in the Apple Pie to show her first. (Here is a picture of it for you all.)

Her response: "Wow!"

Then, I took in the Pumpkin Pie.

Her response: "Bee-you-tee-ful!"  (I'm glad she thinks that. And, hearing her say it that way brought back the past in a flash of sudden wonder.  That is her own way of saying it, and she still has that.  I was glad to hear Bee-you-tee-full because it was "Mommy-speak" and because I was worried she might not approve of this pie as much because I used whole wheat flour in the crust, and that makes it look a little darker colored than usual - it has an appearance - to me - of almost burnt.  It was entirely possible she would have commented on that.  One interesting aspect of this disease is that it makes the elderly as brutally honest as small children.)

Looks Like Another Dozing Day

Mom dozed most of the day yesterday, and I got some stuff done around the house.  Not a lot, mostly I caught up on devotionals and prayer.

I tried to wake her up with food or reading aloud a few times, because I think she might have her days and nights mixed up, and I was going to try to encourage her to get more on the schedule of the rest of the family, but she wouldn't stay awake.

Last night, again at around 6:00, I woke her with creamed potatoes for dinner (to have with her Xarelto).  At this point, she was wide awake and wanting to go out and join the family and do things. I got her into her wheelchair and took her into the living room (whose floor was freshly washed and waxed :-)  So, it was all shiny and pretty in there).  We watched The Robe, an old movie with Richard Burton and Jean Simmons.  Then we watched a few episodes of Keeping Up Appearances, which I can state with confidence that Mommy likes even better than she likes Star Trek spin offs.

I fed her all the things she hadn't woken up to eat during the day. So, she got all her calories in while she was watching TV.

I hated putting her to bed when she was so awake and chipper at around midnight, but I couldn't stay awake any longer.  I left her with her light on and an illustrated poetry book to read.  I woke up at a little after 1;30, and checked on her and she was asleep.  So, I turned off the light.

She was awake again at 8:00 this morning, and I fed her crushed vitamin (the last of her old ones - she starts the new ones tomorrow) and Gerber mashed fruit mix.  I also gave her Tylenol for her arthritis pain.

I left her looking at an American Girl catalog and came to the kitchen to make Stephan mock-quiche which I often make him in the morning.  (1 can drained spinach, 3 eggs, chopped meat, 1 ounce cheese - all this is fried up like an omelet).  Mommy eats this when I feed it to her, and it's got greens in it, so I took some to her room when it was done, and she was fast asleep.

She isn't waking up for Request Time this morning, so I'm going to have to let her sleep for a while.  It's hard - really almost impossible - to wake her up when she wants to sleep.  Even if I help her out of bed when she's sleepy like this, she just falls asleep wherever she is sitting.

Happy Day Before Thanksgiving to All!  (We're making pies and bread today!  Yummy!  Yummy!)

Tuesday, November 25, 2014

In the Good Old Summertime and other sleepy stuff

Last night, Amanda watched In the Good Old Summertime with Mommy while I made chocolate peanut butter cookies.  (Mommy was way under calorie count yesterday as she wouldn't eat much of what I brought her - even the Gerber meat mash stuff didn't appeal to her.)

But, a cookie (289 calories) later, and she was pretty close to her recommended amount.

She loved the movie.  She just smiled through it. And seemed almost as interested in it as she is in Star Trek (plus, I could understand her liking this kind of show ;-)  )

Then, Stephan and I watched an episode of Keeping Up Appearances with her.  She just loved it!  She laughed out loud during some of it.

I think that getting her to laugh is a lofty and worthy goal, and I'm always happy when it is achieved.

Today, she was awake when I checked in on her before I left for church at 7:55. Church is only a five minute fast walk away, and I got home before 8:45.  As soon as I got home, I gave her the vitamin and fruit mix, followed by straight fruit as well as the Tylenol for her arthritis pain.  I gave the Tylenol about forty-five minutes to work, and then I changed out her linens and got her clean and comfortable.

I am thankful to Stephan (today) and David (many other Tuesdays and Thursdays) for staying with Mommy so I can go to church when the service is held here in town.

Later, she had her oatmeal while I read to her from Proverbs and then from Matthew.  Then, it was time for Request Time.

During Request Time she dozed in and out between bites of oatmeal and listening.

She's dozing now.

Yesterday, she refused to get out of bed almost all day, and I was getting worried that I'd have to figure out a way to convince or else get firm about it (which is depressing for both of us).  The doctor said it is important to keep her getting up and getting around as well as she can for as long as possible, and I'm determined to make sure that happens. Thankfully, around 6:30 or so she was ready to get up when I suggested it (for the seventieth or so time that day).  That's when she and Amanda watched the movie.

Even after sleeping and/or dozing almost all day, she was still ready for bed around 9:00.

Monday, November 24, 2014

Phone Success!

Thank you, Brian, for the handset recommend!  As you can see, it works really well.  Mommy got a phone call today, and she was able to talk without any trouble.

This is her second call using this device.  The first time, she used Amanda's cell phone, and I was upstairs, and the call ended before I got a chance to document it with a photo.

This time, she is using David's phone (you can see it on the pillow).  And, I stayed in the room long enough to get a picture.

My cell phone won't work with it.  It's not a smart phone, and I either have to upgrade or get an adapter that works, but Stephan's, David's, and Amanda's phone can all support the handset so we should be pretty well set until I figure out what to do about my "dumb" phone.

The startled expression on Mommy's face is because my camera flashes a few times while it figures out the light situation before it actually takes the picture and does the actual camera flash. About half the pics I've got of Mom have this "what is that flashing light?" expression.  Usually I keep taking pics until I get a good one, but I didn't want to interrupt the phone call with multiple events of flashing lights, so I just took the one.

Again, thanks, Brian!

Happy Thanksgiving card :-)

This morning Mommy got two things in the mail!  Both are from her sister, Bonnie, and so far she has opened the card.  (She's waiting on the envelope.)  It's a Thanksgiving Card, and she loves it.

She's been just looking at it for the longest time!  She read the signature part to me when I went over to take a look at it with her.  She loves mail so much, and she loves thinking of her family.  I'm so glad that those memories haven't been stolen from her yet.  I think, as I understand this wicked disease, that her memories of her sisters and brothers and her parents will last longer than her memories of me,  For some reason, that isn't making me sad as I ponder over it.  You can tell from the look on her face, that those memories are good.  The memories that she can hang onto for longer are pleasant, and that's such a comfort.  I'm thankful that my mother had a good childhood.

Sunday, November 23, 2014

Happy Sunday!

This morning, Amanda stayed with Mom while Stephan, David, and I went to church.  Amanda gave Mommy her vitamin and her mashed banana.  Then she read Mommy the story of Ruth, and they listened to hymns together.

When we got home, we had a late breakfast together at the kitchen table, and Mommy really seemed to love the interaction while we were all joking around as Amanda and David were thinking of "fun facts" that they thought nobody else would know.  It was actually a lot of fun, and if I can remember any of it, I'll have learned a lot.  For instance I did not know that an earthquake once made the Mississippi run backwards. 

We had Yorkshire pudding.  I made it with whole wheat flour instead of white flour, and I more than halved the oil, and yet - with changes that I thought would detract from the taste - it was the best I've ever made. 
Recipe (included for those very few of you who can have carbs and gluten):
1 Tablespoon butter
1 Tablespoon oil
2 cups whole wheat flour
4 eggs
2 cups milk
1 teaspoon salt
Melt oil and butter in the oven in a 9 by 13 inch pan.
Mix all other ingredients into batter and pour into the pan in the oven.
Bake at 350 for about a half an hour.
Slice and serve with syrup or just butter or with grated cheese.  Delicious.
For dessert we had some homemade Greek yogurt mixed with brown sugar and vanilla.  This Greek yogurt did not strain for whey [sic - lol] too long, and it was just delicious.

After this, I worked on finally starting my cottage cheese - being stuck at home almost all the time has really transformed kitchen habits for this family.  There's also more split pea soup bubbling on the stove.

Then, as we were all either working or sitting around in the kitchen, Mommy looked at her mail file for a while until she wanted to go somewhere which we interpreted correctly as the commode.  Smart move on our part.

After that, now, she has been spending some time in her recliner.  She is reading "Little House on the Prairie" in the picture above.  She's holding her juice with iron supplement, and sipping it while she reads.  She hasn't been able to figure out the straw for a few days.  I might stop trying to have her use it since it is so frustrating for her.  If she spills the glass, I have this amazing new dryer to help me keep up on the wash.

Edit:  You can see the phone that Brian suggested we get for Mommy on the tray on the table. It works great with Amanda's, Stephan's, and David's cell phones, but I have to upgrade to a smart phone or get an adapter for it to work with mine.  As soon as that's done, Mommy will be able to talk on that kind of phone - like she remembers using most of her life - all the time :-)

Saturday, November 22, 2014

Happy Morning :-)

I kept checking on Mommy this morning, and she wasn't awake and wasn't awake and wasn't awake, until finally a little after ten, she woke up groggily when I went into her room.  I said, "Good Morning!" and I told her what day it is, that's it's less than a week until Thanksgiving, and that it's crisp, cold, clear morning outside.  Then, I opened the curtains, and sat her up a little to start to get ready to eat her apple-strawberry-banana sauce.  She gets the first two or three bites with her crushed up vitamin in it, and then she gets the rest of it without any crushed vitamin and so much more delicious.

At around 11:30  or so, she was ready to eat breakfast.  I'm letting her set the pace of the days.  She seems much happier when I'm not announcing that it's time to eat or get up or anything.  (The only exception to this is time on commode [half hour max] and other clothes changing times.)

This morning I gave her a picture of Grandma O'Connor to look at.  It's one where Grandma is holding a dog, and when I wondered whose dog it might be, Mommy told me it was Grandma's dog.  Maybe it was?  I don't know.  :-)

In the picture above, you can see Grandma's picture is leaned up against the book.  Mom spent a lot of time this morning just staring happily at it.  I think that she feels close to Grandma when she is looking at the picture, and it made her happy.

On the tray in front of her is her oatmeal and her cranberry juice.  She's not up to feeding herself this morning, so I got to spoon feed her, and while I did I read Proverbs 22 and some of the Gospel of Mark.  Reading while she's eating makes it easier for me to remember to be patient.  It's best if I don't get the next bite on the spoon until she has actually swallowed the bite before.  Otherwise, she can tell I'm ready and it makes her nervous.  So, I read while she chews until I see out of the corner of my eye that she's swallowing and then I slowly, slowly, slowly get the next bite ready.  That seems to be making mealtime more enjoyable for her.

She's laughing in the picture.  The conversation that brought the laugh went like this:

Me:  "I love you so much, Mommy."  (I'm standing with the camera hoping to get a good picture for you all.)
Mommy:  "Me too."  (And then she laughed :-)  the laugh you see captured above.)

Another thing that has made her laugh three mornings in a row is this.  When I tell her it is almost Thanksgiving, I say that the day after Thanksgiving we're going to decorate for Christmas, and I can't wait.  Then I say, "It isn't even Thanksgiving yet, and Marjie has already got her house decorated for Christmas!"  Every time I've said this, Mommy laughs or smiles.

After she finished breakfast.  It was already noon, but she'd only been awake for two hours, and I asked her if she was ready to get up or if she wanted to rest in bed a little while longer.  She wanted to rest.  So, I'm letting her.  We changed the linens again real quick, and she got really depressed.  She hates that part of this disease, and I don't blame her.

So, she was lying there depressed, and I went and checked the mail, and there was a letter from Hannah.  I took it in to Mommy and her mood just lifted like magic.  She really still loves mail.

I snapped a pic with my cell phone to send to Hannah, and I'll copy it here.  It isn't as good quality as it would be with a camera, and it doesn't show her face very well, but she has a really peaceful, happy, smile on her face.  You can almost see it from the side.

Update (12:45):  I just went in to see if she was dozing or awake, and she was awake so I brought her some other things to look at.  She really loves the pic of Grandma O'Connor, and I managed to get a cell phone shot of her face while she looked at it.  I thought I'd share it real quick too.   (And it's Janet's dog in the picture - the back of it is a postcard and it's written there.)

Friday, November 21, 2014


Just a note for all you big brothers out there.

If you want to make your sister very, very, very happy, buy her a dryer, and have it delivered to her door.

This dryer is amazing.  It's HUGE!  I think I could dry a zillion sets of sheets and all kinds of other bedding all at once.

Thank you, Pete.  :-)  Mommy and I both thank you.

Now, that's service!

Early yesterday afternoon, at Mommy's new patient doctor appointment, the doctor wrote her a prescription for a hospital bed.

Late yesterday afternoon, I made phone calls trying to find out who fills those prescriptions for medicare.

At a few minutes after 5:00 yesterday, I finally had the right number, but the business was closed and wouldn't open until 8:00 AM.

At 8:05 AM this morning, I had them on the phone.

The woman I needed to talk to wouldn't be in until 9:15.

I called again around 9:30, and she had me email her a pdf of the script.

She had me call the doctor's office for additional information.

They faxed it to her right away. (I think they must have done it pretty much instantly.)

AND - drumroll - by 2:30 this afternoon, the bed was being assembled in Mom's room.

Who could ask for better service from either the doctor's office, Premier Medical, or from Westmed. the company who filled the prescription.

We are some happy customers.   :-)


This is a bragging sidetrack - it only has to do with Mommy because I'm going to feed her some of it.

The Greek yogurt dripped out whey for too long last night in the fridge and turned into better than the best cream cheese I have ever tasted.  I took several tastes to be sure about how wonderful it was.  Even Amanda, while packing her lunch, sneaked a couple tastes of it - I saw her.  She told me it was amazing stuff and that I should make a spread with it and honey.

The recipe I was following said to let it strain in the cheesecloth for two to four hours.  I guess I should have realized that overnight was too long, but I'm so glad I made this mis-take.  Because, it's a winner!

Deep Space Nine Voyager

I'm taking a little second this morning to let you all know that Mom was just enamored with Deep Space Nine and then Voyager last night, episode after episode.

I wonder if she'll still like it today?  She seems to fixate for a while on one thing, and then loses interest and moves on to the next fixation.

After dinner, she heard the TV going, and she wanted to watch with David.  She actually said while sitting at the kitchen table (listening to the TV going in the living room):  "What did that woman say?"  So, I asked if she wanted to watch it, and she said, "Probably I do."   That was enough of a yes answer to get her wheeled into the living room.

While she watched she was leaning forward a little in her wheelchair like she was afraid she'd miss something, and she was this interested for hours.  I mean she just loved it.  I kept watching her face instead of the TV screen as I came in and out of the room because the intense expressions pleased me so much.  She was really drawn in.  (I wonder if she was able to follow the convoluted story lines?  Stephan suggested maybe it was more the special effects?  I don't know, and we'll probably never know, because she isn't able to verbalize something as complex as why she finds something interesting.)

However, as the clock ticked closer and closer to midnight, and she still didn't want to go to bed, I started to get a little tired.  Even if Mommy isn't, I'm a little too old for Voyager-binge-watching into the wee hours.  (Also - she gets to sleep in this morning - lol - my alarm rang at 5 AM to get up and make coffee and breakfast for my working man.)  So, at 11:40 PM, David didn't start another episode until I announced that the "movie" was over and got Mommy out of the room.  The credits were rolling, and we rolled the chair away, and I got Mommy into bed.  Even then, she didn't want her light out.  She wanted to read for a while.  (At that moment I decided that I'll leave the light on all night if she wants to read all night, but I noticed that the light was out this morning.  David said he'd check on her periodically until he went to bed, and if she was sleeping, he'd turn off the light.)

Anyway, I just was realizing from this absolute love of something I would have never thought of that I should expose her to all kinds of different things just to see what she is wanting to do now.  She was never interested in science fiction years ago, but it fascinates like crazy cakes yesterday.  And, as we've all agreed, and as I think Pete said first (hopefully I don't misquote), she's 80 years old, do whatever makes her happy.

Thursday, November 20, 2014

Doctor Visit

Here's Mommy all ready to go to the doctor's office.  She's in the living room, and "Deep Space Nine" is involved in a huge flashing space battle on the TV.  She said she just can't figure out what those people are saying.  (I couldn't either - it was wild battle dialog with flashes of explosions in between the words - but David seemed to be following the story line pretty well.)

From here, Mommy got put into her hat, gloves, scarf, and a black coat/cape that I thought would be easy to adjust in the wheel chair.  Then we wheeled her out to the truck, and Stephan lifted her into the passenger seat.  I sat between them in the front seat.  I held her hand while we drove because I think the flashing scenery makes her a little nervous.  I asked her what she thought about the scenery and she said that it was hard to see it.  (From context I thought she meant it was going past too quickly.)

At the doctor's office, they were very nice.  The doctor, herself, seemed brilliant and businesslike.  I was pretty impressed by her.  She wasn't too impressed with me - I don't think- as I didn't know lots of the answers to questions she asked and had to call Jeanie twice for clarification, but by the end, I think the doctor knew pretty much what was going on with Mommy, and that's what's most important.

Even is she wasn't impressed by me, the doctor was very impressed by Jeanie and her iron supplement research.  When I showed her the iron supplement Mommy is taking now, and explained how it didn't upset Mom's stomach, she got really interested.  She looked at it for a few minutes, and then she handed it back to me.  Then she clicked away on her computer.  Then she said that it "wasn't in her system" and she asked for the package again, and apparently found it outside the system.  She kept saying, "This is a very good product."  Maybe she knows people who are anemic who can't tolerate the other iron supplements just as Mommy can't.

Mommy made a pertinent comment while we were there.  When I was asking the doctor how long a person should be allowed to stay on the commode because somebody might want to sit there for hours and a time, and the doctor said, "half hour max."  I said to Mommy, "Sometimes life is crazy hard, isn't it?"  And Mommy responded:  "And sometimes it's easy."  That reminded me of Pete's "Don't sweat the small stuff" comment.  (That comment is finished with something like, "and there's no big stuff," or "and everything is small." - something like that . . . )

The doctor prescribed a hospital bed, and I spent an hour or so on the phone after we got home trying to track down what medical supply place in Allegheny County provides hospital beds for Medicare patients.  It seems that it was a won-bid contract (or something like that) and that nobody has any idea who won the bid.  I've got a lead to call first thing tomorrow morning when they open up at 8:00.  Wish me luck.  A working hospital bed will make our life a zillion tons easier.  Or, well, maybe only 114 pounds easier, but those 114 pounds seem like a lot more to me when I lift them.  

Tomorrow!  Dryer arrives!  I'm really glad - I have to guiltily admit that knowing the dryer will be here has allowed me to slack off and instead of having clothes hanging all over the basement (after the basement clothesline is filled up), I now have a pile of clothes to wash beside the washer.  I am so excited about that dryer!  (THANK YOU PETE!)

Must go now.  I've got yogurt set up and ready to strain into Greek style yogurt.  Having Mommy here has made my kitchen be full of good things made from scratch.  I've got my sourdough bread going again.  David said that the bread I made yesterday is the best he ever tasted.  Plus, I made yogurt today, and I plan to do cottage cheese tomorrow.  I've got split pea soup bubbling on the stove.  (Everybody loves my split pea soup - even Mommy ate hers the other night, although she likes the yogurt mixed with brown sugar and vanilla - that we call "pudding" much better.)  Tomorrow, I'm going to make cottage cheese.  The kitchen is pretty much bubbling with yummy.  

Update  (Here's my first attempt at Greek yogurt - I've made regular old yogurt many times, but straining it into "Greek" - this is a first):

Wednesday, November 19, 2014

Mom's view

So, here's mom getting ready to eat her lunch.  She's having Gerber mashed meat stuff (I think it was chicken this time.)  She really likes those Gerber mixes and she always eats them first.  I tasted them and I can't stand them.  Once I put salt and pepper on them to make them "palatable" and she shuddered when she took a bite.  So, now I just heat them up the way they are.  She's also having sweet potatoes grown deliciously in South Carolina and Basmati white rice. There is watered down cranberry juice to drink and a slice of chocolate cake for desert.  (I bribe her with chocolate since she gets very mad at me when I move her from bed to commode to chair.)

Just before time for lunch, the caseworker from Allegheny County Area Agency on the Aging called and offered to come out today instead of tomorrow.  He knew that I was worried about having two things going on tomorrow - both Mom's doctor appointment AND the intake for Allegheny County AAA.  After I made the doctor appointment, I had called and asked at the county about how long it would take for the home visit, and mentioned that I was worried about getting Mommy to the doctor on time.

So, today, Richard (her intake caseworker) had a cancellation, and he called and asked if he could swing by today instead of tomorrow, and I said yes, of course and breathed a sigh of relief about the appointments and (also of course) then got myself all worried about having the house and Mommy "government official ready" in an hour and a half.

Then, naturally, Mom didn't want to get off the commode and move over to the recliner.  And, she got really upset about having to hurry up, or having to move from the commode at all, but I thought to myself if Richard came while she was still sitting there and asked me, "How long has she been sitting here, and I said, oh . . . over an hour . . . " he would think - and rightly so - that I wasn't taking very good care of her.  So, as it got closer and closer to the time he was going to show up, I told her that it was time to move and she was not happy.

That's why she is looking so frustrated at her food.  And, it is also why there is a slice of chocolate cake there.

After she started eating, I sat by her and read "Little House in the Big Woods" aloud.  I decided that Mom's emotional health was more important than impressing Richard by having my house in perfect order.  By the time he arrived, we'd read for several minutes and she was feeling better about life.

He completed her intake and he was so nice.  He said that I was very organized.  HA.  Only about paperwork and Mommy stuff -  clearly he hadn't paid much attention to my sink full of dishes when he walked through the kitchen!  (The dishes I'd decided not to wash so I could read to Mommy instead.)

At any rate, that appointment is taken care of, and now tomorrow we have only the doctor visit to get through.

I thought you might like to see what Mom gets to see when she's sitting in her recliner.  It's a nicer view than the doorless closet that is almost always the background for pictures I take of her.

Although, it's pretty cluttered too - with stuff and more stuff, but I think the pictures hanging on the wall that grandchildren drew and painted for her are wonderful.  I snapped the above picture today just after I gave her lunch. You can see the tips of her toes in the slippers Pete bought for her at the bottom edge of the picture.

Here's a pic of the other side of the room.  I just went in and took this one now.  As you can see, Mommy is dozing in her recliner.  It's very warm in her room, and Christmas carols are playing on the CD player.  "Noel" is on as I snap the picture.

There.  Now you can see what she sees.

chilly morning

At a little after 8:00, I checked on Mommy, and she was awake, but sleepy. I got her a hot water bottle for her feet and turned the space heater up in her room.  It's hard to keep the temperature good for sleeping.  If I make the room too warm, she gets sweaty in all her blankets, and that makes her cold.  If I make the room too cool, she's cold in spite of the blankets.  She doesn't have the dexterity anymore to kick off too many blankets or pull more blankets on if she's too warm or too cold.  She was warm enough, but her feet - that she'd stretched to slip off the edge of the bed - were cool, so I brought her a hot water bottle and put her feet back up on the bed, under the blankets, snuggled up with the hot water bottle.

At 9:00 she had her crushed vitamin mixed with a few spoons of applesauce, and then she had about a 1/4 cup of non-vitamin applesauce.  It is MUCH more yummy without the vitamin mashed into it.  By now her feet were warmed up.  Usually, (if you can call a few days of schedule "usually") we'd get on the commode now and be all washed and dressed and in the recliner for streaming WPEL's Request Time, but this morning is cold, and Mommy is really sleepy, so we've decided to listen to Request Time while lying a'bed.  Then, after that, we'll get up and get moving into the recliner.

9:30, she's sleeping again.  I've got the soundtrack to "Gettysburg" on repeat in there right now.  She listened to it all night.  I think she likes to have music going in the background.  :-)  (Or maybe I just like it and so I imagine she does?)

She is too sleepy to stay awake this morning.  She's waking and dozing while Request Time plays.  I worry about her, that she sleeps so much, but I think it's normal, and I can't keep waking her up.  It's better to let her rest.

You can see her in this pic - trying to wake up to eat her oatmeal and answer the question I just asked her "Don't you want to eat that yummy oatmeal?"


Then, a few minutes later . . .

I'm really glad that I decided to let her lay in bed.  It's much more comfortable to sleep in the bed with the air mattress that keeps changing pressure while actually lying down than slumped over in the recliner.

Tuesday, November 18, 2014

Giving a little less lift warning . . . working so far

Well, today I've been practicing giving a little less warning when it's time to move her with the transfer belt.

Before, I'd give an explanation and give her time to get herself ready before I'd use the transfer belt to move her.  Today, I'm doing it a little differently.  I tell her everything I'm doing as I put the belt on and as I get everything secure, but when I'm ready to lift her, I don't give much of a warning at all.  I just say, "OK, we're going to move in one, two, three."  Then, I move her.  She doesn't have time to get nervous or to grab things.  It's worked great so far today.

Tomorrow, who knows?

A few days ago I was complaining to Amanda that what works to keep Mom happy and what she likes one day isn't the same the next.  I can't repeat all the actions of a good day and make another good day happen.  I have to keep changing things up.

And, Amanda responded:  "She's just the same as every other woman."

sleepy day

Mom is sleepy today.  Like yesterday, she was in her recliner again just in time for Request Time streaming from WPEL.  And, like yesterday, she ate some of her oatmeal herself before the show was over.  When I'd go in and out, I'd feed her a spoonful.  Then, unlike yesterday when she was alert, today she started dozing after a while, and she's been sleeping most of the day.

When this happened before, a few days ago, I got really nervous and moved her doctor appointment forward from December 9th to November 20th, but this time I'm not so worried.  I think sometimes she just needs a day of rest.  Maybe it's her own Sabbath that can happen on any day, not just Saturday or Sunday?

I sat in there for a while with her saying my prayers and reading my devotional while she slept, but now I'm just checking on her every once in a while while I try to catch up on housework.

She is sleeping very peacefully and soundly - just like last time. She isn't waking up as I go in and out, only stirring a little if I make noise. But, there is a difference.  I'm not freaking out about it this time.  I put the Gettysburg soundtrack on for her in the CD player, and I'm letting her rest.

Monday, November 17, 2014

Chocolate Cake makes everything better

But, if she's won't tolerate the gluten I'm going to pay for it tomorrow.

Jeanie and I have a theory that since Mom has been eating truckloads of yogurt (or thereabouts) that she might not be so sensitive to gluten anymore.  That would explain why she didn't have any adverse reactions the two or three times I accidentally and/or forgetfully gave her gluten.

Why did I decide to go the chocolate cake route?  Mom got very upset with me again today - although she thought I was Marjie (sorry Marjie), and so I was able to be a meanie who made her move from the recliner to the commode so I could change the linens on the recliner and then back again - to a nice clean recliner - without getting any of the blame for it.  Marjie, however, was driving her crazy.  (Sorry Marjie - I drove her crazy in your name.)

But, someone suggested that I give her a box of Little Debbies (or a part of a box, one or two) to make her happy, and since I was already planning to try gluten again after the doctor's appointment, I decided, "what the hay," I'll try today and see if I can make up with her.

I had all the ingredients for "Grandma's Chocolate Cake," and I made it, and I gave her a slice, and then she was all smiles.  The world was good.

Amanda joked that all women's affections can be bought with chocolate.  Maybe she's right.  Take that to heart, Stephan Peters, I do love chocolate, too.

And, if the yogurt has made her better, I'm going to spend some more time making and eating fermented foods.  :-)

In expectation of this, David bought me a head of cabbage today, and I sliced and salted it.  Now, it's turning itself into sauerkraut.

I've got this feeling that Mom won't like that much,but maybe she loves sauerkraut?  I don't remember, and there's only one way to find out.  Lol.  She'll have to taste it.

(Pic above of Mommy was taken with my fancy new camera that I haven't learned how to focus yet.  She's had her cake - eating desert before dinner in a true Bailey fashion - and now she's having sweet potatoes, rice, and some kind of Gerber meat mixture).

Update:  She ate it almost ALL.  YaY!   There is just a little bite or two of sweet potato left on the plate, and Amanda is reading aloud to her.  Everyone is happy.

Additional Update: Amanda just came out to refill mom's juice, and she said that reading a book she hasn't read before to Mom is turning out to be an amazing experience.  Amanda said that usually when you read a book you've already read to yourself aloud, a lot of the fun is in giving the story to someone else, and so you kind of feed off the energy of their enjoyment, however, Grandma can't really follow stories very well, so that doesn't work as well with her.  But, reading this new-to-Amanda and to Grandma story is amazing because Amanda is experiencing it for the first time and Grandma is able to feel that energy and so experience it along with her.  :-)  I'm so glad that Amanda is here and is so brilliant!

So far so good!

Today is - so far - knock on computer keyboard - going pretty well.

This is in contrast to yesterday which was the worst day yet, and about which I'm not writing about right now.  I have to recover first.

I waited until 9 AM to go in and see if she was awake, because I think that uninterrupted sleep is nice for just about everyone, and she wakes up when I come in and she is asleep no matter how quiet I try to be.  When I've gone in at both 8:00 and 8:30, she's been sleeping before so I tried 9:00 today.

She was awake at 9:00, so I brought her some vitamin pill in a little Gerber applesauce fruit mix, and then gave her some applesauce without the vitamin to wash it down.  I fed her these while she was still in bed.

Then, I helped her sit up, and using the transfer belt that Pete bought, I moved her over to the commode.  She gets very stressed when we are pivoting from one place to another and she grabs onto things - like commode arms so that suddenly the commode is moving with us and there is no place for her to sit.  She struggled quite a bit this morning, and I had forgotten to put my corset on (for back stabilization before I move her), so I threw my back out, but the magic of the corset is that as soon as I got it on, the pain stopped, and I should be right as rain if I just remember to put it on every time.  Moving her with her transfer belt on and my corset on is just about effortless and safe for everyone.

She LOVED Request Time!  She asked me, "Why don't they have any of our friends on here?" and I told her, "They might yet! Let's listen and see."

After she finished the cranberry juice in the cup in the picture, I gave her the big sippy-straw cup that Jeanie had for her, and she remembered how to use the straw  without much coaching.

She's dozing now in the chair.  She drank about 1/4 of the large straw cup full of cranberry juice mixed with water, but she only ate - as far as I can tell - the bites of oatmeal that I fed her.  When she wakes up, I'll feed her the rest.  She isn't eating very well by herself anymore. That is, she eats very well when we are all at the table and eating together, but not if I just leave the food with her.

I've decided that today we'll just move from chair to commode to chair every few hours.  Since I'm getting a dryer!!!  (THANK YOU PETE)  I don't mind just changing out pads on the chair, and I think that it will be much less trauma for her to move back and forth than to be changed.  Plus, it will be good exercise for her.

Right now, I put some praise music on for her to sleep to.  I have to attack the rest of the house with my house-cleaning powers. (If I have any!)   Yesterday at church one of the Bible readings was Proverbs 31.  Seriously.  Why?  When my house is falling to chaos around me, that is when I get to listen to that. Hurt much. Can't that be the reading, instead, when I've got all the dishes done and the floors polished?

small successes!

Well, it's one minute to 10 and she is all up and changed and had her mashed fruit with vitamin, sat on the commode for a minute and is now settled in her recliner - with ONE MINUTE TO GO until "Request Time"!  We made it!

Sunday, November 16, 2014

Amanda Magic

Mommy is pretty mad at me for changing out her linens. She's been mad for several hours, and when I go in and ask her things or try to talk to her she gives me the silent treatment. (Jeanie warned me about this too, but I didn't realize how serious it was or how long lasting it was.) Amanda, however, was able to go in there and make her smile.  Although, she was still angry, and Amanda said that she can't understand how a person who is so forgetful can fume.  (I can understand, though, I've got fuming as one of my faults.  Amanda doesn't have it. She gets over anger quickly. Lucky her.)

So, I'm thinking about maybe getting some scrubs and changing the linens and other things out while I'm incognito.  Then, if I can pull it off, she won't be mad at me, she'll be mad at the mean nurse. What do you think?  Maybe I will finally learn to act?  I'll need a wig too, won't I?

Sunday morning (a little morbid)

When I used to deliver for Meals on Wheels some of the other volunteers would tell stories about how some of them had discovered elderly people who'd passed away when they brought their meals to the door.

I was afraid about it after I heard those stories - especially for the ones where I was supposed to just knock, open the door, announce myself, and bring the meals in and set them on the table for them.  Usually they were sitting up in a chair waiting for me, but once a man was not in his usual place waiting.  I ran out to tell the driver who told me that I'd better see if I could find him.  (I knew this, but I had kind of hoped the driver would come in to look with me :-)  note: we delivered in teams at our Meals on Wheels, one driver and one runner)  At any rate, the elderly man was fine.  He was just taking a nap in his bed.  He was pretty deaf without his hearing aids in, and that's why he hadn't heard me calling.  A few years later, though, that man did die.  And, now the driver who was with me that day - also elderly - has passed away.  Death is a specter that haunts us and comes to all of us.

So, from the first day Mommy came here, one week and one day ago, there has been a nagging knowledge that there's a chance - actually with the passing of time there is almost a certainly - that one day I'll open her bedroom door and she won't be there anymore.  I can't describe how this effects the psyche. (At least my psyche.  I'm a weak and weepy person.)

There is this amazing movie starring Queen Latifah where she is misdiagnosed as about to die and takes a "Last Holiday," which is the name of the film.  I like the movie very much - mostly because at the end of the day, it was a misdiagnosis and she continues to live.

There are a lot of songs, too, about living each day as if it were the last, but somehow the idea of living a day as if it is the last day has always made me sad instead of happy.  The bitter sweetness of it had a lot more bitter than sweet.

However, now that I'm actually put into a position where I do need to actually live every day as if it were her last, the sweetness of the days is starting, slowly, to overcome the bitter.

I'm starting to understand the songs and the movies.

And, as my heart softens to what is reality, it really is making every moment sweet instead of bitter.

Yesterday, when she was too weak and hurting to sit up in the morning, and I fed her oatmeal one spoon at a time in bed, sitting and waiting - for a very long time for her to swallow so I could give her the next bite became really precious. We were listening to one of the gospels on the "radio" together, I think Mark at that time, and I learned that I can't get impatient and have the spoon ready to put it into her mouth, because that makes her nervous.  Instead, I need to wait for her to swallow the bite she has, and then slowly get the next bite on the spoon so she has time to see what's happening and to prepare herself.  I'm learning to move slowly for her.   Like at the end of the "Sound of Music" when the nuns are told "Slowly, slowly" and they stop rushing around and walk slowly to the door.  (Maybe it was just one nun?  I don't remember for sure.)

When I move slowly, Mommy is much less nervous.  It probably gives her more time to process.

I'm also learning to not stress about the small stuff.  And, the most stressful of the small stuff is potty stuff. I feel a little bad sharing potty information about Mom, because I want to protect her dignity, but if anybody else, in a similar situation can find something helpful, . .  It's so hard to care for a person who has trouble moving, and this was such a help that I'm going to share it.

She is very angry at the pull-ups right now.  When we were getting ready to put a new one on yesterday, she fingered the material of it, and said: "I hate these things.  They make you know something is wrong with you."  And, in addition to reminding mom something is wrong with her, getting them up is a huge process.  She has to stand for me to pull them up, and it is hard for her to stand, and dangerous if there isn't a spotter on both sides or her.  She's on a blood thinner right now, so falling is more of a danger than it even usually is.

So, I was sitting on the edge of the bed wondering how to best stand her and get the troublesome thing pulled up.  I was praying about what to do.  I needed some idea about how to keep her clean and keep her safe from falling and protect her feelings.

Then, it occurred to me that I could just rip a pull-up along the sides and lay it on top of a plastic sided pad on the chair.  And then, if I couldn't get the thing that I already had positioned as far up her legs as I could get it pulled the rest of the way up, I could just set Mommy onto the one that was on the chair.

When she was ready to get off the commode, I used the transfer belt to stand her and pivot her into the recliner.  If she understood to put her arms around my neck, I could, at that time, pull the underthings up, but she doesn't understand and tries to grab and hang on to the arm of the commode or the arm of the recliner or whatever else she can reach.

So, instead of worrying about pulling that thing up, I just was able to swing her around into the recliner.  It worked really well, and later when it was time for her to go to dinner with us in the kitchen, getting her into the wheelchair would have been very easy using the same method.  However, since Amanda was home, we together got her into the normal underthings.  It's better to have the thing pulled up, but if there isn't anybody here, it is possible to get by, and keep her comfortable and clean, without having to do that.

Last night, she ate split pea soup. (I must be an exceptional cook - lol - to make that often nasty stuff yummy enough for someone who doesn't have to be polite to eat it :-) )  Stephan requested it for its health benefits, and David likes it because it has such a high protein content per serving.

I am also learning to use my words wisely.  As the clock approached 11:00 when we were all about ready for bed, instead of saying to Mom that it was bedtime, I said that the kitchen was getting chilly and I wanted to sit with her in her warm bedroom.  Then she was content to get wheeled away from what seemed like the place where the action was happening.

Well, I thought about deleting this post - because it is mostly about me instead of about mom, but I'm going to go ahead and post it anyway.   I told you all to skip the boring parts :-)

Saturday, November 15, 2014

We're getting it together!

This morning Mommy had her mashed banana with vitamin, and then her regular mashed banana, and then her oatmeal with raisins and brown sugar.

After that we got washed up.  She didn't want to put on the clothes I picked out so instead she wore the pretty lacy nightgown that Jeanie sent up with her.  It is pretty, and I think that a nightgown is just as nice to wear as a skirt, blouse, and sweater. Why not? It seemed to please her to pick her own clothes.

After she was all washed and dressed, sometime after 11 AM. she spent some time reading over a magazine and sitting in the recliner.

She dozed off and one, and it was late when she was ready for lunch.  I asked her a few times when she'd wake up as I came in and our it she wanted her lunch yet, and she said that she didn't.  Then around 3:00 she said that "maybe that'd be a good idea."  I took that as a yes.

I made her mashed potatoes with chicken (baby food) gravy.  I cut a yellow cherry tomato up in teeny slices and laid that beside.  Then, for desert, I gave her yogurt with brown sugar and vanilla in it.  I called it pudding.

She ate the tomato slices first - with her spoon - with a great deal of enjoyment.  That surprised me because I thought she would have trouble chewing them, but she had no trouble at all.  She still loves tomatoes.  :-)

Then she ate all the chicken gravy baby food.  That surprised me too as I thought it tasted pretty nasty.  I guess I was wrong.  :-)

Now, she's working on the potatoes.

The "pudding" which she's had just about every day and has loved so far every time is still waiting untouched.

She doesn't like the ugly pictures on her paper towel napkin.  She keeps saying something is wrong with it.  I'm not sure what, but I'll buy some different ones next time I shop.

It's been a good day so far.  

the price of good days

Yesterday, her body was stronger and she was more alert than she had been since she'd come here.  But, this has a downside, and Jeanie had warned me about this.  She said that when Mom is more "with it" she's ornery.  And, it's true. Pray for me that I don't react to her frustration and anger with frustration or anger.  Yesterday, was good.  I didn't get upset - either feeling sorry for myself when she fussed at me or getting grumpy at her, but it was a growing-up experience.  When she first came here, and I cried because she told me I was doing everything wrong, I joked with one of you on the phone (I don't remember which of you) that I'm forty-six years old, it's about time I grew up and stopped getting my feelings hurt by every little thing.  Well, yesterday I didn't get my feelings hurt, but it was a struggle.

Later, after Mom was in bed, Amanda and I were talking about how Mom must feel - especially when the disease isn't gripping her brain so tightly.  Jeanie also told me to try to put myself into her position - even literally.  Jeanie told about once when Mom was fascinated all day long by a magazine picture how Jeanie stooped down to position her head in as close to the same place as Mom's and to look at what Mom was seeing.  Jeanie said that from that angle, she could see that the picture of the house in the magazine looked a lot like the Jeanie's house.  And Mom spent a lot of time outside in the sunshine there, so she was probably liking looking at a home that was familiar.  So, from that advice, I'm trying to see things from Mom's point of view.

I think that when the disease loosens it's grip, for whatever reason, she knows more that it's there.  For instance, she fingered one of her pull-ups yesterday and said:  "I hate these things.  They make you know something's wrong with you."

I learned that every day will be different and that what worked one day may not work the next.  Last night, we thought that we would play Sporcle quizzes again in the kitchen and repeat the night before.  Nope.  She did not like them.  She also didn't like having "Little House" read aloud.  She didn't like almost anything we did.  What she wanted, I think, was to be free to think clearly again and to walk again.  These are things we can't help her with - no matter how much we wish we could.

Amanda finally hit on something that made Mom's eyes glow.  Amanda read poetry and sang some of it (The Highwayman).

I think that if we can make a few hours of eyes glowing with happiness every day, that day is a success, and thanks to Amanda, we managed that, after a lot of trial and error, yesterday.

Friday, November 14, 2014

Transfer belt and independence

Well, I'm not sure if the chocolate is a success or not, but getting up out of bed to a chair sure made all the difference in the world.  I think she wasn't liking laying abed today.  Maybe she felt helpless.

When I saw she was awake, I gave her the first piece of chocolate.  It was probably about an 1/8th of one of these rounds, and she didn't like it much.  She said it was sour.

Then, I said it's time to get up and get around, and using the miracle transfer belt (thank you, Pete), we were able to - just mom and me - get from the bed to the commode without much effort at all.  Mom is much stronger today, or that wouldn't have been possible.

Then, I gave her a second piece of chocolate - again about an 1/8th, and I warned her first that it was dark chocolate and wouldn't be sweet at all, and she liked it very much.

She is already much happier - just sitting up and out of bed did the trick.  I should have done this hours ago.  Tomorrow, I'll read the signs better.

Peace Offering Preparation

She woke a few times as I went in and out this morning, but she wasn't really awake until around 11:30.

Then, it was high time for a bed change, and she didn't like it at all.  This is probably a good thing because she was pretty docile about changing every time before, and the fact that she insisted that it wasn't necessary meant that she was with it enough to want to protect her own dignity.

It's 12:30 now, and she's had a small lunch (mashed potatoes and carrot with Monterrey Jack cheese and 1/2 teaspoon of turmeric- which is supposed to help the brain - added to mixture)  But, she's still mad at me about changing her.  I think that she doesn't really remember why she's mad. Maybe some hormones or something get released that keep her reminded that she's angry.

I tried reading her a book.  I grabbed it off the shelf, and since it had Grandpa O'Connor's picture for a bookmark,  I decided to try it.  It's called "The Story of Mankind."  It's a story book version of the history of the world.  It's written at about the same comprehension level as Little House, and I like to read it myself (you all know I love to read children's books), but she wasn't interested in that one so I put on the Gospel of Luke.  I'm going to try Little House again as soon as the "radio" is finished with the nativity story.

It's so funny because she is pretending to sleep now.  She's peeking at me out of her mostly closed eyes, but if I go over toward the bed she closes them tight.  If Little House doesn't work any magic, I'll leave her alone for an hour or so.  Maybe she will doze off the anger.  I need to figure out a way to change her without hurting her feelings.   Ideas are welcome.

Well, Little House didn't work too much magic.  She didn't want me to hold her hand while I read to her like I usually do.  She said, "Don't pull on that," when I started to take her hand.  But, since I was already holding it, and she was gripping my hand, I kept holding it while I read - I thought if she really  didn't like it, she'd let go.  I read one chapter (Dance at Grandpa's), and she laughed at the jokes and seemed to follow what was going on, but she was still upset at me when the chapter was over.  I gave her the book to look at if she wanted, and I put the American Girl doll catalog, and "A Mother is Love" down beside her.  She picked up "A Mother is Love" and started to read - holding it up over her head since she's still lying down from being changed.  She said that she didn't want to sit up.  She said it was too hard to do that today. (I did sit her up earlier today when she had breakfast, but I had to lay her back down to change her things.)

Now, I'm leaving her alone for a little while.  Sometimes when I'm feeling grumpy, I like to get over it slowly by myself.  Maybe that will be best for her too?

Jeanie said that when she's upset it gets her blood pumping, and that's probably good for her.  So, I'm keeping my attitude positive without any trouble, but I'm just wishing that I could think of something to do to help her snap out of it.  I know that when I'm mad at Stephan I sometimes wish that I would just stop being mad and that everything would just be good and pleasant again, and I know that the problem is me and my stubbornness is keeping that from happening.  It's interesting to see that from the other perspective because I'm pretty sure she doesn't even remember the reason she's mad at me.  Who knows?  Maybe if I find the thing that helps her snap out of a temper, it will work for me too when I'm in one?

I'm going to make her some gluten free thin mints.  They will be my peace offering.

(ha ha - they will also be mint free as I've got two bottles of almond extract, three of vanilla, and zero of mint.  I must have used it up last Christmas ;-)  And, I don't have any stevia so I'm using regular old sugar. Oh well, chocolate is chocolate, yes?)

Here they are.  I only made a half batch, and they don't look any too appetizing, but hopefully once they are out of the freezer and removed from the muffin tin, they will transform into something magical.

She's sleeping now.  My peace offering is freezing, and it's time to get some of my backed-up housework swept away.

I will let you know how it goes when she wakes up.

(PS - I know I'm probably writing more than you all want to read, but I'm not good at stemming the tide of my words.  It seems the faucet of my typing is either on full-force or it doesn't even drip.  You can try to skip all the boring parts.)

Wonderful, wonderful evening :-)

We were supposed to watch a British mystery while drinking tea last night, but when we asked Mommy if she wanted to go in the living room and watch with us, she said: "Not right now.  Maybe later."

So, instead of watching TV, we stayed in the kitchen.  Amanda, David, and I played sporcle quizzes on Amanda's phone and laughed and talked while Mom looked at her papers and read the book "A Mother is Love" - which she's reading again this morning.

It was wonderful.  Even though Mommy (and me too, for that matter), didn't really know the name of films that start with "I" that won academy awards or the how ever many world capitals that start with "C" we still had a lot of fun and there were a lot of smiles and twinkling eyes.

At about 9:30, we were ready to wind down the quiz time, and so we said it was time for bed and Amanda started to wheel Mom back to her room.  Mom did not want to go.  She was so upset that she had a hard time articulating words.  She hung on the table so Amanda had to pry her fingers loose, and then she grabbed the counter as she was passing by it.

Amanda and I felt like crying.  When we got to the room, Mom was really upset.  She didn't want us to help her stand up by the walker.  She wanted to do it herself, but she didn't seem to know how.  She kept pushing the walker forward a little bit and then pulling it back and changing where her hands were positioned.  We let her do this for several minutes and just practiced our patience.  Amanda is much more patient than I am.  She is a good role model for me.

Then we said, "Let us help you stand up and then it will work," and she let us.  She walked about five steps.  Amanda, who could see her face, said she was determined.  Then we helped her pivot to sit on the bed, and she was exhausted from the effort so we said, "Let's just take a break, and rest here a minute before we try to lie down."  Then Amanda sat on her left side, and I sat on her right, and we just held her there - and she held us.  We all had arms around each other and held hands - and for as long as I live - the memory of Amanda and me sitting there with Mommy and all of us loving and comforting each other will be precious.  We sat there for a long time.  There was no clock, but I would guess that it was five or ten minutes at least.  Nobody said anything.  It was just comfort.

Then, we said, "Are you ready to lay down now?" and Mommy said she was.  We helped her get positioned in the bed, and then after we kissed her goodnight, I told her that I'd be back in a few minutes to read to her.

Amanda and I went to the kitchen to talk for a while.  Then, I went back in - I didn't know if she'd be awake or not, but she was awake, and I got "Little House in the Big Woods," and read to her a chapter.  Amanda came in and she read the next chapter.  She sat on a chair by Mommy's bed and read to her.  I sat on the floor at Amanda's feet and held Mom's hand.  At the end of the chapter, Amanda stopped, and I saw that Mom had fallen asleep.

Of course she woke when I let go of her hand, So, I read to her from "A Mother is Love" until she fell asleep again, and this time she didn't wake when I let go of her hand.

It was a beautiful tuck in time.  I know it won't always go so good, but that time was wonderful, and I wanted all of you to be a part of it by sharing it.

I'll end with a funny thing that happened this morning.

I let her sleep in until it was time for her Xarelto this morning. So, at 9AM, I took her mashed banana (a few spoons of it mixed with her crushed vitamin) and a scrambled egg and some cranberry juice.  First, she had the vitamin mash.  Then, she had the banana.  Then, she had the Xarelto with some cranberry juice.  Then, I started to give her the, now cold, scrambled eggs.  She said, "I don't know what this stuff is."  I said, "Well, it's scrambled eggs, but maybe they got a little tough and cold while they were sitting there."  I gave her another bite, and she made a face.  So, I said, "Should I give these ones to the dog and fix you some fresh ones?"  And she said, "Maybe that would be a good idea."

Scooby liked them, and Mom liked the next one - I put in extra butter in the new batch for her to try to make up for the bad batch.

Mom is dozing now - with "A Mother is Love" still held in her hand.  I'm going to leave this "radio" in her room playing a youtube hymn playlist and go and get some work done.

Thursday, November 13, 2014

Don't worry so much ;) (text from Pete)

Mom's day started a little before 8 AM.  I went in to see if she was awake and that everything was okay before I left for morning Mass.  (David and Stephan were both still home and willing to be there for mom if there was a problem before I got back. So I got to go to church.  I feel that I need as much spiritual food as I can get to keep myself together to be the best help I can for mom.)  When I checked on her, she didn't wake when I opened the door, but she started awake a second later when she became aware someone was looking at her.  So, I kind of wished that I'd just gone.  It takes about forty-five minutes, and then I could have woken her when I got home.  But, there was no way to know if she was just lying awake in here or if she was sleeping without checking.  And, I didn't want her lying awake in the dark alone for all that time.

Since I'd woken her, I turned on the "radio" to the Gospel of Matthew and told her that it was still early and that she should try to sleep a little more.  Her radio is my computer, but it works as well as a real radio and there are less commercials.

At 9:00 -after I got home- I woke her up for her Xarelto.  She had it with mashed banana.  The first few spoons of banana were a little nasty because her daily vitamin was mixed up in them, but the rest of the banana was pretty good.  Her drink was cranberry juice mixed with white grape juice to make it sweet.  It was pretty good.  I had a sip.

To get her into a position to be able to swallow a drink to take her pill, I had to sit her up.  It is very painful for her to sit up in the morning.  I'm hoping that when we get the hospital bed with the working motors it will not be as painful as the motors will move her more gently than I'm able to do.  What I do is to lift the mattress up behind her and shove pillows down into the gap between the mattress and the springs. Then, I stand behind the head of the bed and grab the two top corners of the sheet that is folded underneath her, and I pull her up to sit her up some.  After that, I take the neck pillow that Jeanie made her and put it behind her head instead of around her neck.

When that was done, I pulled up her wheelchair to the bedside to sit in it while I fed her, and she smiled when I asked if it would be OK if I used it.  We held hands while she ate.  (I could hold the baby food jar with my forefinger and thumb while she held the other three fingers of my hand.)  Amanda noticed the day Mom came that she really likes to hold hands.  So, we try to hold hands as much as possible.  As usual, she commented on my freezing cold hands, and (as usual) I told her that I really hoped the saying "cold hands/warm heart" is true.

Now, I need to change her.  Tomorrow, I will change her before I feed her.  (I should have thought of that today as I'll have to put her back down to a lying position to change her.)

Changing is finished.  It's already 10:15.  I used the pull-up, but I ripped the sides and then pinned them back again with diaper pins after I put it on her.  Yesterday, I watched a bunch of youtube videos to learn how a single person could change a person lying in bed.  My friend, Michelle, a nurse, came up just after mom got here and taught me how to do it with two people, and it wasn't that much more difficult to do it with one person.  Mom helped me to roll over and pulled herself with the side rail on the bed.  She was really helpful.  But, she didn't like it that the other side of the bed had no rail - she had to trust me then to roll her over, and she preferred to be in control herself.  That's good.  When she was all cleaned up, I told her that I was going to have an orderly come in and help get her sitting up in bed.  I think calling Stephan and David "orderlies" will put a little understanding on the job that they do.

Stephan and I had a really easy time sitting her up in bed, and I thought that maybe she'd like to look at the blue photo album.  So we looked at it together for a few minutes.  There were lots of pictures of Daddy, and one page said:  "Where's my bearhug?"  So, I read it out loud and gave mom a big bearhug.  I said, "My hugs aren't as tight as Daddy's," and she laughed and said, "I hope not."

She is looking at the flowers by her bed, and I said: "They're called geraniums, I think," and she nodded and said,"mm hmm."  She keeps dozing and waking.  Yesterday, I read that sleep is good, and healing, and to let her sleep if she sleeps, so I am letting her sleep for a while.

  I think I'll take the picture book away while she sleeps as her eyes were filling with tears when she was looking at the pictures of Daddy.  Jeanie advised me that sometimes pictures of Daddy make her really depressed and said to set pictures of Daddy aside for a few days when she was really sad and missing him.   I'll try again with pics of Daddy in a day or so.

She dozed much of the morning.  I vacillate from being glad she's getting rest to being terrified that she is getting ready to leave us.  She woke up when the phone rang and Aunt Bonnie called.  She is having a hard time understanding about the phone.  I think a more traditionally shaped phone would be better for her.  I'm going to try to get one and hook it up to my computer somehow.  She fell asleep during Aunt Bonnie's call, but I could tell that she was really glad to hear a familiar voice.  Some of the "mom" spark comes back into her voice when she is talking to people she knows on the phone.

I woke her up to eat her lunch. She had breakfast for lunch:  Oatmeal with brown sugar and milk.  Today, instead of raisins, she got chopped up prunes in her oatmeal.

Aunt Bonnie suggested that she might like to sing some hymns.  So, I got a hymnal and sang some while she ate her lunch.  We took a lot of breaks during lunch because she kept wanting to doze.  I couldn't get her to sing with me like Aunt Bonnie had been able to do at Jeanie's house, but she did seem to enjoy the music.  She heard "Amazing Grace" - the first verse got repeated about a dozen times because maybe she might remember the words and jump in.  Then, I sang "A Mighty Fortress," "Seek Ye First," and "I Heard the Voice of Jesus Say."  All in between she took bites of her oatmeal and dozed off.

I'm worried because she's sleeping so much today, but every time she wakes up - like when I come in and out of the room or if the hymn playlist I've got playing on the "radio" changes abruptly to a louder song - she wakes up with a smile.  So, I think that today is going pretty well - even though she is sleeping so much.  And, I've got lots of time to write my blog post so that it's word count will get up to "War and Peace" levels . . .

Just now, it's 1:36, I asked her if she wanted some lunch (she's really only had breakfast so far today), and she said, "Not too much," but I'm going to make some potatoes up anyway.  I'll add a little grease I've got leftover from frying David up a steak a few minutes ago.  Hopefully there will be some of the red meat magic in that so that she'll be able to metabolize the iron that is locked up in the potatoes.  (Iron in potatoes is more easily taken in by the body when it's accompanied by red meat.)  She seems to really like eating potatoes.  We'll see how it goes.

She was too tired to eat.  She woke up enough to eat the vanilla yogurt, but she slept through all attempts to feed her the potatoes and the tuna fish salad.

She kept being so sleepy all afternoon.  I got worried and ended up calling the doctor and begging for her to get an earlier appointment - just in case there might be something really wrong.  And, wouldn't you know it, practically the minute I was off the phone after changing the MD appointment, she woke up.  She was all chipper and talking and happy.  Now she's looking at an American Girl catalog as happy as you please.

She and Amanda named the doll Jeanie bought her Lorelei, and I said that maybe we could buy some things for Lorelei from the catalog, and she said, "She never does use anything."

I'm having a lot of trouble getting her to drink much.  Every few minutes, I try to give her more juice. I'm hoping that at dinner she'll be able to use her straw cup.  We'll see.

While we were waiting for Amanda to get back from her run, we listened to "Music for Brain Power" on our "radio".  It's mostly Mozart, I think, and Mom said "yes" when I asked her if she thought it was pretty music.  While Mom listened she continued to look at the American Girl catalog, and I did my prayers.  I thought that taking care of Mom would give me plenty of time for my prayers and Bible reading, but I'm still lagging a little behind today.  (My own fault because I overslept and didn't do these most important things first thing in the morning while the rest of the house was asleep.)

The evening got much more busy.  Amanda and I helped Mom into her wheelchair,  She took FIFTEEN steps from the bed before she was ready to sit in the chair.  She seemed very strong!

After that, we all ate dinner at the kitchen table.  We had South Carolina sweet potatoes (from Jeanie and Al) with butter and brown sugar, and Mommy loved it.  It was funny though because if there was a visible fiber, she very carefully picked it out and placed it on the side of her plate.  She is keeping her fine motor skills in good order with all the fiber picking out.  She had vanilla yogurt for desert.  Delicious.

It's after dinner now, and she's looking at books and mail at the table while we get cleaned up (and I chat a minute with Hannah on the phone).

The kitchen smells amazing!  There is whole wheat bread just fresh from the oven.

Well, I've got the kitchen cleaned, and Mom is reading a book of poems called "A Mother is Love" at the kitchen table.  As soon as Amanda and David get back from a run to the grocery store, we plan to watch a British movie while drinking tea.  (Mom will drink the watered down juice type of "tea").

After that, bedtime for all of us.  So, I'm going to post this now so that I can shut the computer down and concentrate on the people in the house - this computer tends to distract me.