Stroke Time

Raym ribbed me the other day about not blogging, I acknowledge that my entries are lagging.  I have nothing to say that I am interested in sharing publicly.  This is the most profound time in my life to date and I need my own time to process all that is happening.

It is my pleasure and my honor to care for Mom, she deserves the Sundays spent juicing, the power juice concoctions I create every couple of days, and every single feeding. She deserves the poop watches, nightly pee checks every couple of hours and every change of her britches. She deserves all the hemp balm massages, the soft words of love and the hours of hand holding. She deserves every tooth and hair brushing.  I begrudge her none of this time, none of this effort to keep her healthy and comfortable. She is my mother and I love her on a level so deep there are no words of adequate description, yet I cannot help her and this for me, is devastating.

I do not want to discuss this devastation, I have too much to do, and if I dwell on it for any length of time, I lose my shit, and I do not have time to be distracted. I have assumed responsibility for the care of my mother, who is falling into death as fast as I will allow her to go.  She rolls her eyes every time I feed  her, she refuses to get out of bed, and is, in fact, curling into the fetal position to her right side.  I massage her straight or sort of straight and I come back in an hour later and she has curled herself up to her right side tucked position. I sleep knowing at least she is being well taken care of.

She hardly tries to talk anymore, and if she makes noise, it is this god awful moaning cry in varying levels.  I listen for the moaning over the ever present droning on of the game show network and would like to put a gun to my head every time I hear the Family Feud theme song. Very much akin to the sound of Mario Brothers in the 90s.

There is no doubt in my mind that Mom wants to die.  She tolerates my efforts to inspire her, but rarely smiles, and in her effort to escape, she sleeps most of the time. I let her.  Who am I to tell her she shouldn't? I know if I was living her existence right now, I would want out. I can't let her out,  because I'll go to jail, so I let her sleep, as she curses me for breaking my promise.

Stroke time is long and slow.  My hope for any form of  recovery is hanging on by a thread, and I won't be writing about it in this form anymore, quit checking for something new. There's nothing new. If you want to know what's going on you can text me, otherwise, I'm signing off.

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.

The Help

I knew that Mom would be requiring therapy and such when she got home.  I knew I would need help with her while I was at work. It concerned me a little bit, but around Christmas time I met a woman who did home care, she was a CNA and she was available.  Excellent.

Her name was Melissa and she came to the hospital a few times to meet Mom and get a feel for what I was looking for.  The fit seemed perfect, and I was thrilled.  Sugar McSugarson soon got a mouth full of salt.  An hour and a half before her first shift on Monday, Melissa bailed. Not only did she bail, but she did not even have the decency to contact me herself, I got a text message from her baby daddy.  I was completely deflated.  Willie stepped in to be here till David came after work.  But, damn, I was not prepared for this cog in my wheel.

We did the same schedule on Tuesday with Willie and David, a friend of mine stepped in and did the long stretch on Wednesday and Monica knew a person who took Thursday.  This was all put in place by 6pm Monday night, so I felt pretty lucky.

Christina, who came on Thursday, is a young CNA who works in a long term care facility.  She is going to take a few hours a couple of days a week and She introduced me to her friend Taylor, who will work the other two days.  Taylor works at the same facility as Christine.

Cascades, where they work pays them $9.50 an hour....pathetic.This really is easy money for these kids and they are thrilled.  So am I.

Now I just have to keep the calendar straight for Mom's in home mini clinic.  Here are the cast of characters you will hear about regularly:

Dr. Maul, Nurse Lyn, PT Marty, OT Lauren, Speech Michelle, CNA Christina, CNA Taylor.

May the Force be with me.

Juice

Juicing will happen today boys and girls.

Strength, Coordination, Determination

It goes without saying that Mom has coordination issues, and severe weakness on her right side.  She has a bit of shakiness in her left hand, but not all the time.  Despite all of her deficits, Mom is smart and determined to do things on her own.  A good thing most of the time.

Thursday night I came home from work to find Mom had almost completely removed her brief. I bought new ones the night before and they are more like underwear than the giant diapers we have been using from the hospital, the material is a bit softer and they have some soft elastic at the waste. And  they do not have the Velcro closing.  The are like underwear. The size is a little bit big, which is good for comfort, but Mom moves around so much that this night she must have bunched them up and they were bugging her, because she was not wet at all. From the view of what she physically accomplished.  Whoa.

She managed to get the brief off on the left side. This means she brought her leg up close enough to her chest to get her foot out of the leg hole, and used her left hand to maneuver the material. The right side of the brief had been torn completely open like the regular diaper.  This was not an easy task.  I tore the other side to see how difficult it was.  While it was fairly easy for me I had to get a good grip and pull a bit to get a tear going because of the elastic at the waist.  Mom did it with one hand. The brief was completely removed from underneath her with only a small portion on the right side stuck under her right thigh.  She was working on this when I walked in the room. 

She had visible relief when she saw me.  I could tell by the look on her face she had been working at it for awhile. I said, Hi Mom, looks like you could use some help.  Her reply an audible Yeah. Upon closer inspection discovering just how far she took the process.  I was so pleased. She confirmed that the brief was bugging her and chose to have the hospital diaper instead.

Now yesterday, we did our thing all day. Mom was restless in the bed, but refused to get up. I am not fighting with her about this...yet. However, I do reinforce that moving makes everything better and laying in bed 24 hours a day is not the road to recovery.  She just rolls her eyes at me or sometimes she nods and shrugs. I just keep speaking the truth.

Nurse Lyn came by around 1:30 to check all Mom's stuff. BP good, Heart good.  Lungs good.  Skin good.  Mom was not in the mood for company, it has been a big week, but she suffered through.

I told Mom earlier that I would have to go to the grocery store after Nurse Lyn left.  I repeat things often because Mom is clear and present most of the time, occasionally she is someplace else.  She seemed to understand and she nodded when I said I was leaving.  Willie was home with her to make sure she was breathing and fix her tv if she pushed a wrong button. I was gone about an hour and a half.  Bank.  Gas.  Food.

When I returned I went straight in to see Mom.  The door was closed, if both tvs are going you need the barrier and Willie was watching a movie. I opened the door to find Mom had thrown all her blankets and pillows to the floor.  I asked her, Hey what's going on in here, Mom..  I asked Willie how long since he looked in on  her said about 20-30 minutes. I tried to put things back in place and she just threw stuff back on the floor.  OK, there is no denying that Mom can make herself clear.  I shifted her back to the middle of the bed, checked to make sure she was clean and dry and went about the business of unloading the truck.

Last night at dinner time, Mom ate 3/4 cup of clam chowder.  This is the most she's eaten in one sitting that I have seen, with the exception of the éclair, lol. We saw with the éclair, Mom is perfectly capable of feeding herself if her left hand is not shaking, and the food sticks to the spoon.  Clam chowder is not one of those items, so feed her. I blended the soup for the most part, but I left a few small bites of potato so she can practice chewing.  She did fairly well, but lost a couple of bites of the bigger potato out the right side of her mouth.  But when she drank water during dinner, she insisted on holding the bottle and drinking herself, no straw.  Mom does seem to have a bit of trouble with depth perception and sometimes it takes a try or two to get the bottle where it needs to be at her lips..  But she tries hard and there's a towel under her chin, so more power to her.

I cleaned up dinner and such and came back sometime later, probably 40 minutes or so, to give Mom her evening meds.  She was angry and not having any of it.  I figured she was still full from dinner and said I would come back later, which I did.  Half an hour later she was just as angry, and refusing to take her meds.  I reached for the tube and she yanked it out of my hand...OMG pissed off, we've all seen that look on Mom's face.  I calmly talked to her and presented my case for cooperation.  Nope.  I reached for the tube again and she about came unglued. She pulled in the tube so hard, I checked to make sure she didn't pull it out.  Oh she's stubborn.  She must have seen the fear on my face as she softened up just a bit, babbling at me, not screaming, but she took the end of the tube, held it up almost teasing me and stuck it inside her pajama top, put her left hand over it and gave me the challenge look, like, "Go ahead, get it now, bitch."  This made me laugh and while she was not amused, I just calmly told her through my laughter, I will not fight with you, this is your choice and I hope it does not send you back to the hospital.

Week one done. Learned a lot, and looking ahead.

TV

This was the look on Mom's face most of the day yesterday.  She has not gotten out of bed since last Saturday, and while I tell her that if she got up more she would not be so stiff and sore.  She is ridiculously stubborn and if she refuses, that's that. I suppose I could force her, but I imagine that scene would be pretty ugly, so I am racking my brain for ideas to entice her out of bed...lol, maybe I should unplug the TV.

Last weekend, I was cleaning the living room and when we had cable installed the week before, the cable guy made a God Almighty mess of my organized cords and plug strips. I was having an, I can't deal with this right now moment, so I just shoved everything back behind the living room TV and moved on. Nary a minute passed and I heard Mom yelling from the other room. I rushed right in there to find her TV had been disconnected.  I laughed because I have been asking Mom to yell for me if she needs something.  I got her a bell, but she has not rung that yet, and just laughs at me when I regularly suggest it. I have a baby monitor as well, so I can hear her and I tell her if you don't want to ring the bell, just yell for me I can hear you. I was amused that the TV was the first reason she found dire enough to yell for me.

I told her I was sorry and crawled behind the TV to fix the problem, thinking that's what I get for being lazy, lol.  All was well within minutes.

Today's Poop

The story has to be told...

Mom had a rough night. I was up with her for over an hour after I came home from work.  She had not pooped in 5 days.  I knew her belly was hurting, and she let me rub it a bit and during her change she let me keep her on her side and rub her back. I gave her some Tylenol and after awhile it seemed to help some, either that or exhaustion forced her back to sleep.

I have genuine concern about this and send Willie to the store for prune juice first thing.  In the meantime, Monica shows up and scours my kitchen for some Smooth Move Tea with success.  Mom has some juice, some meds, some water while the tea steeps.  Nurse Lyn is due at 12:30-1, so poop is my highest priority with her. 

Poop and a spot on Mom's back I am keeping an eye on.  Mom will not remain in a pillowed position, she moves and squirms around till she gets the pillows to the floor and achieves some version of her favorite on her back position 24 hours a day. This is not good.  However, Mom does move a lot and that is a good thing, the poop has kept her in bed.  But, Mom is wanting to get in her chair these days, so I am not super worried about the spot, but a bedsore would be sooo bad.  We've got enough to deal with as it is, so I want to head off trouble anyway I can.

I did not feed Mom any food because I did not want to make things worse.  I kept a regular dose of juice and water going hoping to flush her out.

In the meantime, She had PT at 9, OT at 11, and Nurse Lyn came at 1:30.  Big Day.

The plan with PT Marty was to get Mom up and dressed, so Marty could see how Mom did with these activities.  But Mom was so uncomfortable, I did not want to force her out of bed.  Marty understood and worked with Mom in the bed, moving her limbs and working on getting to know her better.  Marty laid out things we could do as far as exercise goes, but none of this was anything we are not already doing.  We are veterans now.  Marty will be coming Monday and Thursday next week and we will just keep moving forward.  Overall I really like how Marty interacts with Mom and Mom seemed to respond well to her despite her poop problem.

OT Lauren came in at about 11:30.  This was her first visit, so we went  through the intake process and she gave Mom the once over.  Lauren is going to come once a week for now, and will increase this as necessary.  The reason being that Mom is new to the home routine and she does not want her to be overwhelmed with all the folks coming and going.  Mom is already doing basic tasks like brushing her teeth , so Lauren felt that PT was the primary work at this point and we will take things a week at a time.  Fine by me, I am pretty much on the day to day plan myself, lol.

By the time Nurse Lyn got here, Mom was in considerable discomfort, but actually dealing with it rather well.  A scrunched up facial expression, but no moaning or crying.  I told Lyn my concerns and she was equally concerned.  Mom's heart, lungs, BP, and skin check were all good.  Lyn agreed that we should keep an eye on the spot, but said it still looked good.  She praised me for Mom's hydration and overall good health.  Lyn told me she would help with the poop by manually helping the process start.  Mom's eyes flew open wide as she put on her gloves and began to explain what she was going to do.  before we could even roll Mom over, the avalanche of poop began. 

As I have said in the past, who knew I would ever be this intimate with my mothers bowel functions, but here we are.  Lyn and I almost danced a jig for the poop.  Lyn laughed and told Mom that just the threat of manual stimulation loosened her right up.  We opened Mom's briefs and began the clean up process.  It was too late to save the sheets, poop was everywhere and more was coming.  Lyn said just let her go and as we prepared for the sheet change, we just kept the mess contained as best we could.

The first thing that came to my mind was how much better her poop smelled that when she was in the hospital.  I know this sounds gross, lol, but the hospital poo was absolutely rank, and it took awhile to air out the room afterwards.

Mom pooped for 20 minutes. Visible relief showing on her face.  I know she felt better for the release, but I think some of the relief was over avoiding a finger up her butt, lol.  I was so grateful that Lyn was there for this, as I would have been rather overwhelmed by the messy clean up.  The next thing I was grateful for was that this did not happen while my friend Danielle was sitting with Mom. We dodged a bullet there.

Lyn and I got Mom cleaned up and settled in her bed before Danielle showed up.  Lyn told me she wanted to see some excrement that was more solid and told me to watch for that.  Yeah, ok.

I gave Danielle they lay of the land, and in showing her how to give Mom water, I just administered her evening meds early.  One bit of water ignited more poop and it was a perfect opportunity to show Danielle how to change Mom.  The stool was still very loose except for one golf ball sized hard ball of poop that appeared.  I believe that was the last of the hospital cement food coming out, I recognized the smell.

After Mom was finished, clean and settled again I asked her if she was hungry, she practically screamed YES!  Danielle and I laughed and fed her a big bowl of her new favorite food, stew. She consumed nearly half a cup and I was just thrilled.

I had to go to work, so I left Mom in Danielle's capable hands, crossed my fingers, said a prayer and went to earn a couple of bucks.  Danielle came down to see me at work after she left at 9p with a good report.  Mom did poop again, she was not interested in eating, she took some water orally and was sleeping soundly when she left.  All good news.  Poopageadon was over.  Now we can get down to some serious regular food and poop schedule.

Have a great day, my people.

Angle Love

Mom Had a visit from Aruna a couple of weeks before she came home.  It was a good visit with lots of smiling once I talked Mom off the ledge.  Aruna brought Mom her favorite perfume, Angel, which I spritzed onto her sheets and blankets before she came home, so she would have one more reason to love her room.

Aruna also brought Mom a crystal angel.  Mom's first day home we worked together to find the perfect place for the Angel to hang so Mom could see it every day.  It was afternoon at the time and when I held the  angel in the window it picked up the afternoon sun and spread a blanket of rainbows all around the room.  Mom nodded yes and we hung it permanently in this spot.  Every after noon the same blanket of rainbows fills the room and Mom points them out to me as she sees them.

This morning I had not pulled the curtains back yet and Mom pointed to the window, so I would open them.  Her face lit up when the angel appeared.  We will take those happy moments anyway we can get them.

Mom's new PT, Marty came today.  Mom was not feeling good and she did not sleep well last night due to the fact that she has not pooped...yes, we are back to Mom's poop. Mom was not happy when I prepped her for Marty's arrival, so I was not sure how it would go.  I just hoped for the best.

I love it when I get my wish!  Marty was great with Mom. She got her right limbs extended and taught Monica and I a few exercises we can do with Mom regularly to increase her range of motion and keep progress moving forward on the weak side as well as strengthening the strong side.  Marty will come twice a week to begin with, which is a visit more than I expected, so cool.  She also told me that if she thought Mom would benefit from more weekly visits, she would ask for them.  I was happy to hear that.  I asked Marty if insurance had the final say and she told me with home care, she had never been denied an increase in visits with a patient who was working hard.

Mom worked hard today, very little complaining till the end of the hour, which is fair, so I am pleased with everything. Mom is watching a little Judge Judy while we wait for Lauren, the new OT to arrive.

Fun Mail

Mom received a package from Kathleen today.  She was delighted as I pulled each item out of the box.  There were several interestingly shaped pillows for body propping, an emersion blender for making yummy food, a lovely letter and a stack of photos. She handled everything, would not let me move anything off the bed, even the blender.  She looked at each photo and showed me the ones with me or Josh or Raym.  She had that lovely smile on her face the whole time.  Mom is back, delighting in things she loves. I am so proud of her and how much she is trying to participate in everything she can.

Thanks, Kathleen, this was the highlight of today, we both felt the love.

Home

Well boys and girls, we are off and running.  I know my last email was the first week of January and so much has happened since then.  Mom has had a tough time, she was angry or upset most of the time and it was hard to handle in real life and I did not really feel like writing about it.  Kathleen, David and Monica were great sources of venting and in inspiring new ideas for dealing with the day to day of this, but writing the same sad story everyday was not going to happen.

When I am sitting with Mom and she is venting in her way, it is a real challenge not to insert my own fearful words for hers and hear that she does not want to come home, she is mad at me for choosing the wrong things, she hates me.  It is all I can do to muster the knowing that this is my fear, and I do not understand one word of what she is actually expressing.  But the closer it came to moving her home, the bigger that challenge became for me.

The weeks leading up to her arrival at my house included moving around every room in my house, ordering everything Mom might need, coordinating the medical equipment with the hospital, making lists and more lists...all the while trying not be terrified, yet knowing this was what I had to do, feeling it was the right thing with every fiber of my being. 

I had the pleasure of nagging the staff regularly and being just baffled at the common sense ineptitude that surrounded me.  For my final words on Manor Care, the Reno facility was far better than the Wingfield facility, but still seriously lacking in real concern for mom and listening to me as mom's spokesperson just didn't happen.  I had to pitch a fit on numerous occasions for various reasons ranging from care, to therapy over and over again. The discharge process was just the final nail in the coffin, as it went about like the discharge from Renown, we were up and ready to go, Mom sitting in her chair for over 2 hours, and we waited for the numbnuts to finish final paperwork, give me her meds, get us transportation.....despite the fact that I had been following up on these details with everyone involved almost every day the last week...are we good to go? Do I need to assist with anything?  No, no everything is on schedule, no problems.  So my final parting words were not pleasant which I had hoped would not be the case, but oh well, I said what needed to be said and have no regrets.

Once Mom got out the front doors everything changed. The tears and anger I had been fighting all morning disappeared.  Mom liked the ride in the cab, really looking around at the world.  David made some awesome ramps for the steps into the yard and into the house, Willie painted them mostly pink.  Mom smiled at them as we wheeled her in the house.  Mom seemed a bit nervous as we got in the house, she stayed up for a bit, but after three hours in the chair and me on a parting rant, I think she was exhausted.  Willie and I put her in bed and she was instantly relaxed, looking content, checking out her room, as I pointed out certain touches I added just for her, especially in view while she was in bed. Her smile, which I had not seen in weeks, returned.  Whew!

I now believe Mom was saying get me the hell out of here!!!
What's taking so long!!! 

Mom ate half a twice baked potato patty for lunch, visibly grateful for food with flavor.  On Saturday morning I made her a fried egg and potato, she looked like she went straight to heaven with the first bite, and even made the yum sound. Mac n cheese for dinner was a hit.  Pancakes on Sunday morning were ok, but when I fed her a beef stew soup on Sunday afternoon she ate like she had not in years.  It was great till she ate too much and felt that full belly feeling which was not too pleasant, but did not last too long either so that's good.

But the best moment of the food weekend was when Monica showed up after work with an éclair yesterday.  Mom's eyes popped out of her head, and before Monica could return from the kitchen with a spoon, Mom had snatched that container off the table and onto the bed in front of her.  We laughed, and I made Mom sit up in bed.  She refused Monica's help, took the spoon and ate about an eighth of that éclair, crust and all, completely by herself. Scooping big old bites and relishing every bite she took.  It was fantastic, also confirming my belief that Mom could chew just fine. We took pictures and Monica posted on Facebook.  I'll post pics here as we go, but I am still figuring out how this new life will look for all of us, so that has not been a priority.

It will be a big week with lots of visitors for the home care process. Nurse Lyn came Saturday, and we like her.  She advocated for real food, she understood the demands on the family, she loves her job.  Score. Lyn will come twice a week for a couple of weeks then at least once a week as we move forward. Her main job is to make sure Mom's heart, lungs and skin are good, plus she is the case manager for all the therapy.

We are definitely reassigned to Dr. Maul, which means acupuncture will resume and I'm very happy about that. She will see Mom once a week.

Mom will have one hour each of PT, OT and Speech, although here we will focus on speech.  Mom is eating fine and will continue to improve, we need some communication!!!

So my conclusion for the weekend is complete success.  Mom is relaxed and happy, her sense of humor is in full play.  We've had a couple of moments of angst, but they were very short, and I am sure we will have those moments as we move on.  I have them in my healthy life, so to be expected. Mom is sleeping twelve hours through the night and eating and smiling. The fear is visibly gone from her body, she is so relaxed.  Life is good.

Talk to you soon, thanks for all the love that helped lead us here.