October 2014 vs February 2015

 

 

Peace

I love it when Mom is sleeping peacefully.  Sometimes she has what I call stroke nightmares.  I wake her up and calm her down, but, yikes, the sounds she makes are heart wrenching.  Peaceful slumber is what I hope for her every day. Send lots of love for Mom's sleep, she needs her rest.

Sunday Morning Notes

Mom is sleeping peacefully, Kathleen is on her way home, I just changed the laundry from this morning's poop, Floetry is playing, Willie is out helping a friend pick up a car and the house is quiet but for the slight chatter of the game show network on the baby monitor.

Mom likes the Game Show Network.  If she insists on having the TV on, and most nights in the middle of the  night she does not want the TV on, but if she does, I try to find a channel that does not feed into 4am infomercials.  Game Show Network is one of these channels along with Nick at Night, or Law and Order, right now we have all the bells and whistles of new service, so I will check the movie channels too.  Lately, if I change the channel, the next time I come in the room the channel has been changed back to Game Show Network, which makes me laugh, and really, who doesn't love a good Family Feud Marathon with Steve Harvey hosting. On the DVR list there were lots of episodes of a show called Baggage.  I had no idea what it was, I figured it was something Willie recorded.  Last night went I went in the TV was still on GSN with this game show hosted by Jerry Springer.  There are lots of game shows I don't know so I wasn't really paying attention except to notice it was Jerry Springer on the TV until I heard him say Baggage will be right back, and I realized Mom had recorded the game show while working the remote. I checked with Willie and Mom is adding to the DVR library quite a bit, I'll have to get in there and delete the stuff like Baggage.

While I am on the subject of TV and the remote...Mom manages her way around that remote better than you might expect.  Sometimes she gets stuck on a menu she can't get out of, or gets the volume to zero and either can't or just hasn't yet figured it out when I come in the room.  I do not know this remote very well myself, so sometimes me helping Mom is a moment for laughter. This morning I was showing her to put it on the bed where she could see it and push the buttons with her fingers, rather than hold it and try to get the left thumb to reach everything correctly.  We shall see. Luckily, it does not seem to get her overly frustrated.  Occasionally, I will walk in the room and she will hold the remote out to me and roll her eyes, with the techno stress face, but she still finds humor in it...oh wait, maybe that's me.



 

On the ever important poop report, sorry, no photos, lol, Mom is pooping an appropriate amount in acceptable textures. However,  she did have a night time expression last week after the night person left and before I got home.  So now we've faced my second worst fear after a bed sore, Mom sitting hours in shit. She released around 11:30p and I got home around 1:30a.  Willie was a wreck because he wanted to change her,  but was afraid to freak her out.  I grabbed a bucket of warm water and towels and went right in.  Bless her heart, the relief on her face when she saw me tore me up. She had really worked hard to get her britches off by herself. She made a decent mess, but all I could think of as I cleaned her up was how much of her body she had to use to accomplish the level of disrobe she had achieved. These moments give me hope and heartbreak all at the same time. Mom was exhausted by the time we finished and I waited till morning to talk to her about the whole thing. She agreed that Willie could assist her in these matters if absolutely necessary. I showed him how, and he already helps move her several times a day, so it's not like he's never touched her. We are all greatly relieved. Fear two:  addressed. resolved. nice.

 

And while we are talking about Mom's butt, I am happy to report all the love and good wishes must have contributed to the healing of Fear Number One: Mom's bedsore. It was completely gone by last Wednesday, barely a speck of red on her white skin.  I have to give Mom huge credit for moving around so much and also allowing the pillow propping that eases the pressure.  Unfortunately, the Tuesday night poop fiasco ignited a nasty rash, that is further irritated by the elastic on her britches right at the crease of her leg. The rash is much worse on her left side, which I am sure is because that's the leg she moves back and forth.  Last night I put a soft clean cloth between the elastic and her leg creases, plus I added Foille to the treatment plan.  Since I am home today, I will leave her commando all day on the waterproof mats.  She is in heaven without her britches.  

 

It has been an action packed revolving door of visitors since Monday, so Mom is enjoying a sleepy Sunday and so am I.  Hope your Sunday is filled with love too.

 

Happy Birthday Kathleen!

Kathleen visited this week, landing in Reno on her birthday, and she will be going home in the morning.  I was on the ball enough to get out my camera and catch this moment between the two of them upon Kathleen's arrival.  It's always a good day when Mom smiles to the point of teeth showing.

For Jennifer

One of the nice things about the family support in Reno is that each person has their own obsessions. For example,  Monica is in charge of spa activities and keeps Mom's nails and skin tended when she comes 3-4 times a week. She always cleans Mom's fingernails and lotions her skin, things I do not do on a daily basis.

When Jenn visited, she reminded us about Mom's oral health and the importance of keeping Mom's teeth brushed.  And while brushing Mom's teeth in the morning is something I do.  The reason is because all of my life, Mom got up peed then brushed her teeth first thing.  We could not go out to the living room at Christmas till Mom brushed her teeth.  I wanted to establish a regular morning routine for her as close to her normal life as possible.  I now know that there is nothing close to Mom's pre-stroke life happening, so the fantasy of Mom finding old normal has dissipated, and each day we do the best we can to find a new normal.  So sometime in the morning hours Mom brushes her teeth.  I do guide her a bit and remind her to brush the upper teeth, and the front of her teeth, but for the most part she brushes her own teeth while I clean her partial. 

In the hospital, Mom refused to allow her partial to be removed, but as soon as we got home, she let me have it without complaint.  That sucker was super gross and stinky for not being out of her mouth in who knows how long.  The first day, after soaking in the denture cleaner and being well scrubbed by me, when I put her teeth back in her mouth, she made an audible happy sound.  Ever since, she lets me have them each morning willingly.

However, I was not good about the evening brushing everyday, or following up with those who tended those duties in my absence.  After Jenn visited, David reported that he received quite the lecture from her regarding evening brushing.  I didn't hear the words, but felt the guilt when he told me about it, because I was bad about making sure she brushed at night too.  The photo above was last Sunday morning, and David had to snap a photo to send to Jennifer, lol.  We are all much better about brushing now. I also told our helper girls they need to do this too.  While much of Mom's oral health problems started long before her stroke, no sense in letting them get worse. 

So, thank you, Jenn, for the kick in the butt we needed on behalf of Mom's Teeth.

Bonding

One of my concerns about moving Mom home was that Willie would drive her crazy.  One month in and there is one less thing that I have to worry about.  He is great with her and even on her worst day, he can usually coax a smile out of her. He helps me move her up on the bed or to the chair and he makes it easy because he is so strong.  Mom likes easy. The sun was shining in the other day and they were trying on sunglasses together. Too funny.  He has a good heart and he loves her, so all is well.

The Christian Girls Bring Love

 

 

I was at work Thursday night when Jenn, Cora and Courtney came to visit.  Jenn texted me a photo and while I was sorry to miss the cuteness parade, I was grateful for Jennifer's email the next day, which wrote this blog entry for me....Thanks, Jenn!

 

 

Hi Lori, 

 

I thought I would give you a little information regarding our visit last night. It has been a little over a month since we came to visit - slap me!

 

She was smiling wide when she saw us. She held her hug with me a long time and squeezed tight. I was relieved that it seemed she was having a good day and was not too tired for us to stick around. Cora brought and read two books for Grammy: "Zoe Gets Ready" and "The Very Hungry Caterpillar." Grammy was patient and content watching Cora read!  Grammy talked for a good long while afterward, waving her left hand around quite a bit. I felt ridiculous sitting there just staring at her not knowing what she was saying.  When we got home Cora let me know, Grammy speaks her own language. This made me feel a bit better, because my toddler is right. Grammy is speaking her own language and as you reminded me as well, the more she practices the easier it will be to find the right words. 

 

The best part of our visit was when Courtney decided to treat Grammy's elevated bed (with the hanging blanket over the sides) as a fort. She crawled as fast as she could back and forth. Being the paranoid mother I am, I was trying to get her out from under the bed just in case she hurt herself under there. As I would run around one side to grab Courtney she would crawl quickly to the other side. So, here I am running around the bed trying to gather up my baby while Cora and Grammy are laughing at me. Grammy actually laughed so hard the bed shook. In good humor, I told her to stop making fun of me which she found even funnier!

 

I was concerned about her teeth and made her show me. Then let her know that I have seen a lot of yucky teeth through my years working at the Dentist office and reminded her to let Lori and others brush her teeth thoroughly. She put her hands to her teeth and says something about "applying" something. At least that is what I could make out. I asked her if she was being stubborn in which she answered yeah and she chuckled. I urged her to let everyone take care of her teeth, because they are not looking healthy. Dental hygiene is linked to your overall health. I urged her to keep herself healthy because we missed her.

 

She was still in good spirits when we left but she seemed to be getting tired and Courtney was getting fussy. Overall it was a good visit.

 

Sending Love!

 

Jennifer

Amber and Indiana

Amber and Indiana stopped by last weekend to say hi and otherwise entertain Mom with cuteness.  Indiana liked spinning in the chair while Amber tickled his belly on each rotation.  I was too slow with the camera to catch the big giggles, but Mom got the full show which brought a smile to her face.

Mom's Pain

It is interesting to me the use of pain to describe Mom's right side problems by all the folks who make their way through here in a week. It is the first question they ask, "Are you in any pain?"  Mom moves her head which each of them interprets as Yes....it's not....and then they ask, "Can you show me where it hurts?" To which they receive a blank stare from Mom.  This process, for me, has become a discovery of Mom's body language.  Learning the difference in her looks and her noises, her breathing.  Watching the movement of her right side, and her left side, which is not without it's issues.

Mom's pain is from non movement.  She is stiff and sore when she moves.  If Mom is lying still asleep or awake, she is in zero pain. Her left leg does do some restless leg spasms that can go on for some time.  The other night we were up for over an hour before Mom calmed down.  This was the worst I have seen, they usually pass in a few minutes, faster if she lets me rub her leg and unwind her hip, but, Mom has a hard time letting go.  When she doesn't want me touching her I sit and breathe deeply, reminding her to find her breath and through her breath find her body.  I remind her to let go.

I change Mom first thing when I get home from work and on the weekends I set my alarm and get up about the same time. Sometimes she wakes up and wants to watch tv, and sometimes she just wants to go back to sleep.  For the last two nights, Mom has barely even opened her eyes during the whole process, which now includes cleaning and bandaging of the spot and leaves her lying on her right side for a quite a few minutes. Last night and tonight, she just moved where I put her like a rag doll barely making any sound.  She opened her eyes and looked at me a couple of times, but basically just slept right through it. I moved her right leg all over, rolled the hip to the left, raised her right hand a bit to have her hold the peg tube, (she doesn't really hold it, I just rest it in the palm of the right hand, so it stays in the front and does not get pulled behind her back.  I tell her the right hand can still do things.), barely a grunt of sound, just slow sleepy breathing.

Mom is not in any kind of chronic pain.  The last two nights prove that to me, so I am letting go of the worry that I might be wrong. I am not wrong.  Mom just needs to move more. Say a prayer for that one folks, she's still a willful child, lol, and that's just painful for me. I've got to get creative.

Mom's Butt

There are a lot of things I never imagined or even had the remotest thought about in my life time.  Mom's butt is one of those things.  As parents, we are all well acquainted with the bottoms of our children and they grow up and those parts become their responsibility and other than to insure health, we are alone in the world with our own butt as we muddle though life.  The circle of life is giving me a run for my money these days.  Mom is my baby now and I am well acquainted with her butt and have a responsibility to make sure her butt and all the surrounding parts are healthy, clean, tended in whatever way necessary.
 
I mentioned before there was a spot on Mom's butt I have been keeping an eye on.  Late Saturday night while changing Mom, I saw a tiny drop of blood on the sheet, and sure enough, Mom had a pin prick of an open sore in the center of the red spot I have been watching. I went and fetched warm water, soap and such to thoroughly clean the spot.  I slathered it with Neosporin and checked Mom for dryness every hour after that on Saturday and Sunday.
 
This to me is so very bad.  I have listened to horror stories about bed stores from Mom herself and I do not want Mom to have one at all. I am now really stressing to Mom how important it is for her to leave the propping pillows in place, to get up in her chair every day, to move more, please.   I am on the edge of freaked out here and I tell her so in the nicest possible way.  Sunday I convinced her to allow me to use the side rails for the bed.  Up until now if I even pick the rail up, she pitches an almighty fit.  This day she understands my concern, or appears to anyway through her cooperative behavior.
 
I put the rail in place and every half hour squeezed another pillow in, slowly propping up her entire right side.  She was not happy each time I walked in the room, but she did not complain too much. I moved the bed sideways to allow easy TV viewing, and she dozed on and off for several hours.  When she woke up fully, she scooched herself off the incline onto her back at the far left side of the bed.  I took a deep breath and moved her back up. She's a willful child, that one.
 
Send love to Mom's butt please.  Have a great day.

Bed Pads

I bought Mom some waterproof pads to go under her.  Quilted on one side and nylon on the other, the pad is intended to serve two purposes.  First to protect the sheets from leakage, and  second to make moving Mom up and down the bed, or rolling side to side, just a bit easier on the back of the mover.  The idea was good, but the quilted side was not so comfy, and the nylon and quilt materials were not stitched anywhere in the middle of the pad, so the layers tended to bunch up as Mom squirmed around.  I bought some fleece fabric this weekend to cover the quilt and while I am at it I will stitch seams across the middle so the pad stays solid.  I was extremely happy how it turned out.  I only finished one yesterday, but it rocks.  When Mom is in a good mood and lets me take some pictures, I will show you the finished product.  But for now I am so grateful Mom taught me how to sew!

Oral Health

Yep, Mom brushes her teeth twice a day. I bought her a spin brush and she does all the work herself.  She is no longer fighting me about removing her partial, which we do in the morning.  Better breath and cleaner teeth are part of our daily routine

Speech with Michelle

Michelle, the speech gal, asked for Mom to be hungry on her visit last week, so she could see Mom eat.  Monica brought bread pudding on Sunday, so I saved a big piece for Mom's Tuesday breakfast.  I did not feed Mom before Michelle came, so she would be hungry.  Of course, I talked to Mom about it, so she knew.  By the time Michelle got there Mom was really hungry.  She ate that bread pudding like a champ all by herself.  Michelle was pointing out Mom's weaknesses in her swallow, and none of this is anything we have not already heard.  Mom does have weakness on the right side of her mouth, just like the rest of her body.  Now, I agree Mom should not have a plate of food when no one is around, but she can chew just fine. Her swallow is such that Mom has never choked or even come close to choking when she is ingesting anything from water to big bites of éclair.  It takes her a minute to chew some bites, and occasionally she will lose a piece of food out the right side of her mouth, but what I am noticing is that she is becoming more aware of this as we move forward.  In the beginning a piece of food would sit on her chin until I scooped it up, now she always reaches up to catch it before I can help her.  This feels like progress to me.  Mom rolls her eyes when they talk about food and eating, and I am in full agreement.  Mom eats just fine, the mission now is to increase the intake by mouth stretching her belly.

Yahtzee

Monica comes by a couple of mornings a week.  Last week she and Mom played a rousing game of Yahtzee.  Mom loves her Yahtzee...  When Mom is out of bed, she prefers her bed be made up and neat.

Appetite

Day before yesterday, Mom ate almost 2 eggs.  I did not have potatoes ready to cook, so I made 2 eggs instead of one. Her appetite comes and goes, but we are settling down to a pretty regular routine of eating breakfast and dinner by mouth, the rest of the time I pump her full of power juice, which consists of apple, celery, power greens, mix berry, (blueberries, raspberries, strawberries, green grapes), carrot, Alive Liquid vitamins and protein powder.  Lots of water, and not much else to drink as she is just not interested in juice or coffee.  Dinner has been some sort of soup, which Mom really seems to like.  She is eating between 1/2 a cup and a cup, which seems good to me.  Last night she ate blended chicken noodle and corn bread, which she really liked.

Interesting...

Last week one morning Monica was here.  She worked on her computer and Mom flipped through a magazine.  Mom likes photo albums, and now magazines.  Still wish I knew what she was thinking.

Sleep

It's been a big week and Mom had a rough night last night.  I predict it will be a very mellow, sleepy day.  That's good for both of us.  I am learning quickly, that I must take very good care of myself if I am to survive this adventure, and in order to give the best I have to myself, Mom, Willie and everyone else whose life I touch.  Sleep is the key to keeping myself strong. This week went much better in that regard. Mom is sleeping now, so off I go to join her in slumber.  I'm off today so there will be more posts later from this week's activities.....but now, a nap.  Have a great Friday!

 

 

Oh Happy Monday

I felt tremendous relief Monday when Mom did not fight with PT Marty, but instead worked really hard.  She sat on the edge of the bed and did leg lifts.  Once she is sitting up Mom can maintain her balance very well until she gets tired, then she drifts off to the right. Mom did some crying while she was sitting on the bed, but she did work through it.  Sometimes I think the tears are the realization of how far she has to go to find some sense of normal in her life.  Yesterday the weeping was simply sad, certainly not pain or fear.  I am learning the difference.

After sitting on the bed and working out, she allowed us to transfer her to the chair.  I was secretly doing back flips in my head. The chair is key to recovery.  Building up the time Mom is in the chair is critical for everything else she needs to do.

After Mom was up and mobile, Marty was ready to go.  Mom pointed to her hat hanging on the hook near the door, and I fetched it for her.  Then she pointed to her scarf.  OK Mom wants to go outside. Nice.  It was a bit chilly out, so I bundled her up, laid down the scooby ramps David built and we were off to the park.

Virginia Lake is right around the corner from our house, and the park is at the other side of the lake.  About half way down to the park it started to rain.  Just a sprinkle or two, but I could feel the wind coming up, so I wondered if we should turn back. I asked Mom and she wanted to keep going, so we did for another five minutes, then it really started to rain.  Not a downpour, but hard enough I could feel the drops hitting my face, and the wind was downright freezing.  Mom was babbling the whole time, but I could not see or hear her very well.  I stopped to look her in the face and tell her we needed to go back.  She was shaking her head yes, and making the brrr sound, which cracked me up.

We turned back and I was walking as fast as possible so we did not get too wet.  Once we got back home, Mom kept wanting to go back outside, pointing to the door, then the gate.  I think she wanted to escape, but since that was not an option, I brought her back in the house.

Willie made a fire for us and we watched part of Day After Tomorrow while we warmed up.

Mom did not want to go back to bed.  I was extremely grateful again, but she was done being in the living room, I would not let her go outside, so we went in her room and looked at photo albums for about an hour till mom was really tired.  I could see it in her face. It was after one and she had been in her chair since about 10:30, so I was pleased.

Nurse Lyn was supposed to come around noon, but she texted me from Stead at 1pm and Mom was just about ready to go back to bed, so I told her it was too late, she needed to come Tuesday.  Once Willie and I got Mom in bed, I changed her and she slept the rest of the afternoon.

I wondered if she would be awake all night, but no.  She was snoring when I got home and did not have the heart to wake her up.  I keep the baby monitor next to my bed and I tend to wake up fairly regularly in the night, and each time I could hear her snoring.  She slept till about 7:30.

It's a new day starting out happy.  No fighting this morning, She is in having breakfast and playing Yahtzee with Monica.  I am about to take a nap.

Have a great day, Mom's people.  Keep sending the love....

The Struggle to Communicate

The most difficult thing about all of this is Mom's inablility to communicate  She has so much to say and no one understands.  I sit and listen to her gibberish and tell her I cannot understand, then she gets mad and I eventually leave the room due to the frustration level.  She looks at me like I should understand every word.  I want to understand every word more than anything.

This weekend was the opposite of last weekend.  Mom is angry. Mom is fighting everything.  The meds, the food, the moving.  She refuses to get out of bed.  I told her she had till Monday, then I was going to insist that she get up and start participating. She just looks at me like yeah right, good luck with that.

Today is Monday and I had to wrestle the tube out of her hand to give her meds this morning.  Then she refused to eat any food, so I went and got liquid food for the tube and I had to wrestle it away from her again. PT Marty is due any moment and I am not looking forward to the fight about that.

Oh, Happy Monday.

Steno Pad

For as long as I can remember, Mom kept her journals in a steno pad.  I saw one  the other day when I was shopping and thought I would get one to leave on her bedside table. A couple of times over the weekend I saw her pick it up and look at it.  I wrote her name on the top.  I wish I knew what was going on in Mom's head when she looked at the blank page.

Bath Day

Yesterday Monica and I gave Mom a bath.  I ran towels and water while Monica washed her head to toe.  We wrapped her in towels as we went and kept the heater high enough to keep the room nice and warm.  Mom seemed to enjoy the bathing as she just allowed everything to happen. She let us move her and never one moan or complaint.  Afterwards, we got her soft bed pad back on and she seemed comfy and happy....well as happy as Mom ever is.

Until Mom can get in the shower Monica and I will do this once a week on either Saturday or Sunday.