The Call of Doody

Have you ever been enjoying a meal, watching a good show, you go to have your last bite and it’s gone?!  Somehow, inadvertantly you ate it without realzing it?  I had that expeience last week and I was a bit dismayed about my level of sadness about the event.  It was like a moment in time had passed, I forgot to make a point to enjoy that last bite, and now I’d never get it back.  I feel like that’s the way life’s been going for us lately… so consumed by the ever changing world of pops and the level of attention he requires, that I just don’t have anything left in me to pay attention to even the last bite of a good meal.  I’ve somehow self inflicted a world of parallasis to projects knowing that my attention will be needed any minute and indifference to everyday tasks as pops slowly progresses toward the second to final stage of dementia.

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Pops and Happy staring out the window

If it were just dementia maybe it’d seem more managable, but he’s got the trifecta of troubles; Congestive Heart Failure, COPD and Dementia.  Giving him breathing treatments, getting him to stand on a scale so we can weigh him everyday to make sure he’s not retaining water in his lungs from the CHF and trying to find foods he’ll eat just to maintain his weight has become our main focus.

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Pops, its not going to get into your lungs through your eyeball!

He is now at 96 lbs and we try to give him anything we think he might eat, of course sneaking in supplimental drinks into his shakes every chance we get. Food has become a lot more of a challenge, we aren’t sure if it’s the texture of the food, how much chewing is involved, or sweet vs savory. It’s probably all of it, according to the internet and maybe even the plate we put it on.

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At least he plays with his food if he’s not going to eat it.

Last night we made homemade burritos, one of pops favorites and we thought the tortilla would be too tough to chew so we added his favorite sauce ontop of the meat with cheese and tomatoes. He took one bite and set it on the floor.  We then went for cream of wheat and he ended up taking one bite and then smearing it all over his hands and face.  Next we tried Raisin Bran, because he kept saying he was hungry but one bite and then he spit in the bowel.  We gave him a half of a banana and when we got back to him he’d thrown it across the room.  The day before he’d eaten all of a brownie and ice cream so we figured that would be a fail safe…. nope, no luck, and he’s still saying he’s hungry! Finally, I used the rest of a strawberry banana shake with ensure in it and gave that to him.  He probably had half of a glass and didn’t want any more. That is not like him at all, so times are a changing.  Even Pops water needs to be altered since he has a hard time swollowing, and it goes down the wrong pipe. When he swollows down the wrong pipe it causes him to cough and can result in pnumonia.

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We use Thick it and it has really increases the amount of water he’ll drink, so he’s staying hydrated.

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I found the cup on the right at the thrift store, and it has a lid with drinking holes of both sides!

Don’t get me wrong, I’m honored to care for my dad and will be grateful to be there for him till the days end, but sometimes it is really draining. Physically, mentally and emotionally spent, but still grateful! Pops and I  are so blessed to have Mitch carry the weight of these trying times, it would be too much for one person for sure. We are a team and even as I re-read this I know I wouldn’t want it any other way!

He wasn’t sleeping well at night, waking all hours of the night and getting wrapped up in projects, click here to see his oxygen hose art.

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Yes, he has a glove on his hand and a glove on his foot

Being the fact that he, at times, is up all night which in turn makes his days long and rough, the doctor prescribed a different kind of sleeping pill…..BAD news. The side effects made him so weak and off balance that he fell twice in one day, we took him to urgent care thinking he’d broken a rib. Forturnately it wasn’t broken but certainly bruised. We had days of him bouncing off the walls just miserable,… come to find out, it was probably the pain he was feeling and couldn’t express it.  When the doctors asked if he was in pain he said no… but guess what, he was and thats what was causing him to be so loud and anxious. We’ve learned that people with dimentia can’t express things like before and we have to learn how to listen differently! Here’s a video of how he was right after getting home from urgent care, it’s just heart breaking.

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We put his bed on the floor so if he fell out of bed he wouldn’t have far to fall

Now, when he wakes up at 2 in the morning and he’s hungry I make him breakfast and get him ready for the day.  I would rather wake up 20 times a night than to drug him up, make him weak and worry about him falling more than I already do.

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Charlie, Milo, Happy and Papa all napping

Just as we’ve gotten used to pee puddles on the floor at night, we’ve entered into the next phase….that’s right people, its now about the poo, the caca, the crapper doo, the doody magoo!  A few nights ago we were concerned because he hadn’t had a bowel movement for a few days so when he finally went, we were all so happy.

Later that night I woke to the too familiar motion sensor, bleep, bleep, bleep I look up and see on the screen him standing in the middle of the room relieving himself.  I tell myself I don’t need to hurry out to him as he’s already peed, 2 minutes later I hear another bleep, bleep, bleep and see him sitting on the end table, with his pants down.  I manage to drag myself from bed and go to help him get back to his.  Of course first I turn on the lights to clean up the puddle in the middle of the floor.  Right when I turn on the lights pops is like, whoa, there’s a puddle there, what’s that from?  I blame it on the rain, clean up the mess and think its all good to go, until I go to stand him up.  There, in a soft serve massive pile ON THE END TABLE is his latest bowel movement.  Now that’s not the worst part, the worst part is that he’s already forgotten what happend and ends up getting his hands in it, and then touching everything around him, his face, his clothes, me.  Oh boy, after an hour, getting him showered and everything wiped down he was ready to eat and start the day, never mind that it was 3 a.m. by this time.  I make him oatmeal, put on a movie and go back to bed for a couple hours thinking it was a fluke.  I’m sad to say it wasn’t.  Since then we’ve had a few more incidents of incontinence and we know that this too is part of the disease.

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Pops, Mitch, Karen, Mike and Stacey downtown for the memory walk to help end Alzheimers

What hasn’t and never will change is love, his need for love, our love for him and his love for us.  For that we are grateful.

 

 

 

 

 

 

The Endurance of Love

Letting go of a loved one is something you can never really be ready for. My mom left this world in 2003 after a long battle with cancer, yet the day death came I wasn’t prepared. The humid Oklahoma air hung heavier than usual and my heart ached as I sat next to my mom’s bedside holding onto her hand for dear life, knowing that soon she would be gone. I tried to memorize her face, the softness of her hands and the smell of her lavender lotion. My Aunt, holding my mom’s other hand said through sorrowful tears “Jackie, it’s ok, we love you and you can let go now.” I couldn’t say it, I didn’t want her to go, she was my mom! In my heart I begged her not go, I remained silent, but inside I screamed and cried for my mom to stay with me. I never really knew the comfort her love provided me until her last breath and she was no more of this world.  I’ve felt bad for not saying it was ok to go, but for all my life she never knew how much I needed her. I’d like to think that me being honest and somewhat selfish at the end, made her spirit soar to heaven feeling beyond loved and forever needed.

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It’s been almost 13 years and still when I think of that day, I feel all those feelings as if it just happened. I want to be more benevolent in dealing with my dad’s disease, especially seeing him struggle so hard at this stage.

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Hours on end he’ll try to figure out what is going on with his mind,but he no longer remembers what’s causing these problems and doesn’t realize that he’s saying the same things over and over. During these challenging times he’ll say, “Oh Lord, help me please! What is happening? Oh, Lord, please, help me. What am I doing? Please, someone help me, what is happening. I don’t understand. Lord please, HELP ME!”

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Even the doctor ran tests because he was so not himself last time we went to the VA, but all the tests came back fine.

We try to distract him, we’ll explain that it’s the dementia, we’ll tell him how sorry we are that it’s happening and it’ll stay with him for seconds and then he forgets what we just told him and he’s back to that horrible feeling that he’s loosing his mind….because he is. Sometimes distractions work and he’ll relax and enjoy the moment, but other times he wont let it go and we just tell him he’s asking the right guy.

Sometimes if he naps it helps to relax him and he'll have a better day afterwards.

Sometimes if he naps it helps to relax him and he’ll have a better day afterwards.

I’ve heard people say, dementia is a difficult disease but to see a loved one, day in and day out struggle so hard trying to figure out what is happening, is a whole other beast of burden. A couple of weeks ago dad was going through a particularly rough time, unable make eye contact, he was pleading in desperation for help to understand what was happening, engulfed in his own world of dispare there was no connecting with him. Heart broken and feeling helpless I said the one thing I would never want to happen. Sitting on a little stool next to him in his chair I said “Dad, I’m okay if you need to go to the next stage of this disease and forget that I’m you daughter, if it helps you to not feel lost anymore.” After I said it out loud I began crying so hard my shoulders were doing the up and down shake as I gasped for air, my face drenched in tears and red splotches I let all my sadness out. I was mourning the loss of my dad as I’ve always known him to be and trying to make myself accept how things are now. To my astonishment he stops repeating his cycle of words, turns and looks directly at me with sympathy and attentiveness and says, “What’s wrong baby girl?”  He placed one hand on the top of my head and ran it over my hair down to the side of my cheek and then cuped my face with both hands. So beyond grateful for this moment, I desprately tried to utter my feelings as my sobbing is now uncontrollable. Through gasps, I say, “I just miss you already, this sucks! I’m so sorry this is happening. I love you! Thank you for being here with me in this moment. I needed you, and you came back to me! I love you.”  He pulls my head to him, gives me a huge love hug and says, “It’ll all work out baby girl, it’s ok. I love you.”  Seconds later he was back to trying to figure out what was happening, but I had just experience the true endurance of love, a precious gift of a moment in time that will give me everlasting joy and help me get through the tough times to come.

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Love endures all things!

 

Dad and His Dementia

The confusion, the frustration about being confused, and the acceptance of just feeling lost has become Pops reality.

Dad giving his confused face for the camera

Dad pretending to be confused

His disposition is still one of love and patience (ok, and a little ornery when he’s tired), but his ability to do every day tasks on his own is no more.  He’s made coffee everyday for at least the last 55 years and now he just can’t remember the steps. He’s like 10 second Tom from 50 First Dates, he’ll ask what day it is, and less than 30 seconds later inquire as to what day it is. I’ve been trying to help him keep track of the days by marking them off on the calendar, but he forgets to look at the calendar. I’m learning that he really doesn’t need to know what day it is, so when he guesses the day, no matter what the day, it’s the day he guesses. There’s no need for him to get bothered and frustrated with guessing the wrong day. Especially since I’ll tell him the actual day and he doesn’t agree with me, and says,  “No it isn’t. Is it? No.  Oh,I don’t know what I’m doing.  I’m confused.” He’ll scratch his head trying to make sense of being wrong and that’s when I’ll say, “Well pops, all you need to remember is how much we love you, other than that, Mitch and I got everything taken care of.”

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Pops favorite chair to sit and rock in when i give him the task of watering the flowers.

Getting him out of the house has become a much longer process, by the time he’s loaded up his pockets, he’s forgotten that he already did it and feels like he’s forgetting something.  Thankfully he trusts me enough that when I tell him I got him covered, he’ll let the worry go and finally head out the door.

re-arranged his room so we could add a chair for when company comes to sit with him

re-arranged his room so we could add a chair for when company comes to sit with him

Now armed with oxygen he’s been going on walks with me, of course searching high and low for change.  A couple days ago, again leaving him treasures to find, he was so happy he just kept saying, “If you don’t look for it, you’ll never find it.” And boy does he look, and look….. so much so, it took us 30 minutes to do a half block, but I wouldn’t have it any other way! Almost home, he see’s something shiny in the middle of the road, he stops, stares at it and says,” just a minute”.  He leaves his walker next to me and heads straight for the shiny spot, until the oxygen hose stops him in his tracks half way to his destination. He walks back and says, “Well that was pretty silly of me, forgot I had this thing on.”  We both giggled about it and he was right back to searching.

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Pops looks for shiny and I look for pretty, together we’re pretty shiny!

 

I got him a game called Quirkle to try and keep his mind active since he no longer does his word searches.

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It’s a game where you match colors and shapes, but being color blind, pops never was very good with colors, so he just matches the shapes. When I first got this game for him March of this year, 2016, it brought to light how difficult things had gotten for him mentally. He struggles to match all the different shapes, but he takes his time and will finally find where each piece goes, except distinguishing between the square and the circle, those two he gets mixed up.  I won’t say anything and a minute later he’ll catch it and say, “Who put that there?”

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One of the most interesting things about his dementia are the things he misses visually. It’s as if his eyes and his brain take longer to connect what’s in front of him. The things that are in front of him, he just cannot see it, or maybe it’s just that he’s not comprehending what’s in front of him.

Pops trying to remember how the remote works.

Dad actually being confused. Lately he’ll see the time on the microwave and tries to enter it on the remote.

I was washing dishes after his breakfast the other day and he was looking all around, as if he were searching for something and finally he looks at me for the 3rd time in his search and with a look of surprise and happiness he says, “There you are!”  and I smile back and say, “Here I am!”

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He still loves to help when he can. Lately he’s been pulling weeds while I’m at work, unfortunately they all aren’t weeds…. but he tries his best, so I go behind him and replant the flowers.

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I’m planning to create a few projects for him to work on while I’m gone, things like separating a box of mixed screws and nails (especially since he used to be a carpenter ) I think that’ll make him feel good and give him a sense of purpose.

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I don’t know what in the hay I am doing.

I just got a book called Creating Moments of Joy by Jolene Brackey, it is a very useful and enlightening.

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I highly recommend it for anyone who has someone with dementia or Alzheimer’s in their life. The best part was learning how to live his new reality and how to prevent more confusion . Hence, agreeing with him about whatever day he thinks it is!

Every day is flower smelling life loving day with pops in it

Every day we try to stop and smell the flowers, no matter the circumstances.

The outreach and understanding from others has been nothing short of amazing.  It all started when my dear friend Amy’s parents gave us a monitor to keep an eye on pops.  They had used it while caring for her Grandmother, doing all they could do for her during her last years and knew after she passed that our time of need would be approaching soon.

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I  have the sound on at night, the second I hear him cough I know he’s up.

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this is the camera in his room, we’ve told him it’s there so we can make sure he’s ok

Pops trying to figure out what the light on the camera was for

Pops trying to use the camera to turn on the TV.

 

From the time I started writing this post a couple weeks ago to now, I’m sad to report things have gotten drastically worse. He’s not able to find the bathroom, has no understanding of whether its day or night, and will wake up around 1:15 feeling ready to start his day. We can no longer leave him alone. They call it stepwise progression for those who have vascular dementia.  It happened on the 14th of May, Dad officially lost his way, we morned the changed and accepted the challenge with tears in our eyes and love in our hearts. I was beyond heartbroken to see such a change from one day to the next.

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I tried to get him to sort the rocks into light and dark piles; didn’t happen. I’ll try again another day

He’s reached a new level of adorable;

Mitch went over to check on him one morning last week and there was Dad, standing in the bathroom brushing his hair……with his toothbrush.

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Uhhhh, baby girl, I think these bubbles are getting kinda high

He’s reached a new level of dangerous;

Pops is a smoker, he has smoked since he was around the age of 14. Last week Mitch and I were picking up our kayaks and learning how to tie them down. On the opposite side of the car was pops who was winded from having a smoke, thus needing oxygen to breathe (which has been the norm, smoke, oxygen, smoke, oxygen, etc.) So Mitch got him set up and not even a minute later Dad lit up another cigarette with oxygen around his nose, while in my car! My heart stops and I immediately reach for it, hoping we won’t get blown up.  Of course Pops doesn’t understand and begins resisting my attempts to take it from him.  Thankfully crisis averted.  Then the next morning when Mitch went over to check on dad and what do you know, he’s smoking in his room!  Oh my goodness, he is a loose smoking cannon!   I’ve asked him time and time again, “does smoking bring you joy?” and he would say, “Yes.” He’d given up other vices in his life for the ones he loved through the years, so I told him I wouldn’t try to make him stop smoking. But now, we see it killing him, and it is literally speeding up his demise.

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He was just watching a movie last week and when it ended he decided to go out and smoke. Before going he said he was feeling good, so I thought this was a good time to really get a gauge on how much one cigarette does to him physically, so I asked him with 10 feeling great, how good did he feel.  He said, “I would have to say an 8, I feel pretty good.”  After his outing, he came back in trying to catch his breath, drained and tired.  When I asked him how he felt between 1-10 and he said, “oh, I don’t know, around the same, I can’t say, I don’t know, I couldn’t tell you, ugh. I’m just so tired right now, I could sleep. ”  I wrote the numbers on a piece of paper and asked him to point to the number that he felt.  He put his finger between the 5 and the 6, so I asked him, “So you feel like a 5 or a 6?”  He said, gasping for air, “Oh i guess, maybe a 5.” Making a point to him about how bad he now feels, I asked him if he would rather keep smoking and feel like he does and die sooner, or stop smoking and have a good quality of life from now on?” He said, “The last one, I haven’t been smoking as much and I’m ok with that, I’m doing better.” So it’s in his mind about quitting.  Being an ex-smoker myself I haven’t forgotten the kind of “hold” that cigarettes can have on a person, so I wouldn’t make light of how challenging it is to move on without them, but it has become beyond obvious that getting him to stop smoking will drastically improve his remaining quality of life.  We’ve got our wheels turning, he’s already agreed to let us hold onto his lighter from now on.

Five days later…He’s reached a new level of cooperation;

Latest update….We’ve persuaded him to use an e-cig in place of cigarettes. Yes, we know it’s still harmful, it’s still nicotine and not a cure, but it’s a much better alternative!

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Pops smoking his e-cig

For the last week we’ve been trying to control the number of cigarettes he’s had, and the more we did, the more he wanted. Just Yesterday, after a morning of diverting and distracting him from thinking of cigarettes, he remembered what he wanted and was digging out butts from a can, at one point having a smoke in each hand! But with that being said, only three smokes all day….YES!!  We’ve had the e-cig from a couple weeks ago when I first tried to get him to switch over and he just wasn’t having it, but today, today it stuck!

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It is now 3:10 in the afternoon, he’s used his e-cig three different occasions and not near the amount of one regular cigarette (had he been smoking he’d already be on his 12th cigarette of the day) and he has not once asked for the real thing! So long, putrid nose burning stink, sprinkled butts around our yard, ash and burn holes on pops clothes and the deep gut churning fear of him burning himself or the house down! Hallelujah!

 

Pops trying to make face like Milo with his bottom teeth out

Pops making his Milo face with his bottom teeth out