Visits

We have been over for a few days now on our extended Christmas break!  I love having the chance to spend time with Dad while Mom takes a nap!  I'll talk and he'll wink and smile when he agrees!  I completely love the yes wink!  I think it's super cool that my mom made a letter chart, so she just uses that to have him spell out what he needs.  I'm going to make a picture chart, so we can figure out what he needs a little faster!  He's been sleeping a lot, and it's funny when my husband is napping at the same time, because my husband snoring will wake him up and he'll smile some, then go back to sleep.  My sister and I were watching funny youtube movies and cracking up, and he was just enjoying us laughing!
I'm also working on another idea.  I want a saliva suppressant mixed with a mouth moisturizer, so his mouth isn't so dry, but he isn't choking on his spit.  I want it to be in a spray bottle like air compressors, so even if his mouth can't open much, you can still spray in there.  Yeah.  Too bad I don't have a chemistry/pharmaceutical degree to work on it!
Either way, we're enjoying our vacation time!

Just keep smiling

 See that happy face?

 He was trying hard to sing "Happy Birthday" to my son!

Skyping with my brother's family!

He had great fun!

I was super excited to see my Dad after their long vacation, so we drove up on Sunday and saw them for a little bit!  My dad was covered in a blanket, so I asked if he was cold.  He just smiled and kind of laughed.  He wasn't cold, but someone covered him up, and there wasn't anything he could do about it, but laugh!  I love this positive attitude!  I hugged him, and it's strange, because he can't hug back!  But, he mumbled that he loved me!  I love my Dad!

 With his family on vacation

Back at home!

He came!

Today was my kids' Primary Program at church!  We walked in to see that two of my sisters and my Dad were already there!  Dad has always loved the Primary Program!  He cried a few times, and I was so glad that I was sitting behind him!  I'm so hormonal that I can cry at the drop of a hat!  Our kids did a great job and they loved that their Papaw and Aunts were there!  My sisters are so great for working so hard to get him there and back!  I wanted to take a picture, but my phone was dead.  Just know he is doing well enough that he can talk some and he didn't completely choke on the Sacrament, so hurray!  I have the best family!  I started up a Service website on facebook in honor of my awesome dad-  Dan's ALS Warriors.  He loves service, and I wanted others to serve in honor of him and then post on the facebook page.  I have lots of likes, but no one is really posting.  It's a work in progress.

He's smiling more!

My dad got to come with the crew to my daughter's baptism yesterday!  I was so excited to see him!  He isn't eating much by mouth anymore, but he still had a milkshake at Braum's after!  He's super hard to understand when he talks, but he's still trying!  He's great!  He smiled a lot and didn't complain at all!  It's awesome considering all he's going through!

Still making it!

I got to see my dad for the first time in a couple weeks!  He's still super hard to understand, but he spells it out for us!  I love how my mom talks for him all the time!  What a crackup!  She was told to make sure he stays part of the conversation, so she makes up things he's thinking.  She's bound to be right some times!  My kids still crack him up!  They crack me up too!  I went to hug him before I left and he got teary eyes.  My poor dad!  He's a little weaker, but he's still around, so hurray!  I was able to show him the ultrasound pictures of our coming little guy that I'm naming after him and my grandpa!  I love my dad!

A little worse

I finally got to see my family again after their two week vacation in Idaho!  My dad is even harder to understand now and I have no idea what happened to his communication device.  My daughter was pretty great at figuring out what he was saying!  He has to be sat back more, since his head just drifts forward.  He was able to scoot his feet back a little bit when my sister went to reseat him.  I failed on the pillow the first time.  Two inches too far up.  Poor dad can feel it!  I can't even begin to imagine how it would feel to be stuck in a chair all of the time, completely dependent on others.  He loves watching my baby though!  Samuel seems to crack him up!  It's fantastic when my dad laughs (as long as he's not drinking or eating)!
I'm excited for the ALS Walk on Saturday!

Much better day!

So, apparently they didn't have a great start to the week, but yesterday went pretty well!  Dad had some friends come over and they talked and even brought watermelon (my dad loves watermelon with his salt) and ice cream!  Two of my sisters came over and spent some time too!  Everyone took turns helping out!  Mandy and I reseated Dad and neither of us have ever lifted Dad before.  I did it first and then Mandy did it and got it right!  Awesome!  Dad got his communication device in and is doing pretty well with the $20,000 machine!  He has some great planned sayings!  I recorded some of it on my school iPad into storymaker, so I'll have to figure out how to link that up. Hurray!

It's getting harder

Yesterday was hard for me.  Usually I do pretty well helping out and can be patient trying to understand my dad.  He wasn't patient today and only smiled a few times at my kids' antics.  I was able to feed him a lot (he LOVES hawaiian pizza) and he was frustrated when he wasn't able to get a 4th slice (it was gone) and he had to go back to the Pretzel crust (which he usually loves).  He was dying for his lemonade and I gave him some.  He sputtered and coughed and told me that his throat only liked water, and he wanted lemonade.  Then he tried again and spit lemonade all over my hand.  The third try was the charm and he was able to finish it off.  He really wanted to pick out the perfect doorbell and it wasn't working out for him, because he had me in charge of the computer and just kept telling me down and up randomly, so I still have no idea what he was looking for, other than a wireless doorbell with two push buttons.  It was frustrating for him not finding the perfect doorbell, so he decided he wanted to see the other doorbell and had me look up it's model number.  No dice.  I spent forever searching though.  Then he had me get his push button from beside his bed and when I pushed it, I was able to find the other doorbell, which is really the one he wanted to search for.  I handed it over to Scott, because I was feeling overwhelmed. Mom got back (I really hope I was of some help for her) and she pulled a new doorbell out.  Dad wasn't happy about the lack of a second pushbutton.   I tried to give him more water and I wasn't getting it close enough to him, so he just got mad and said he was done!  I was too.  I started having flashbacks to when I was a kid and never did enough or was good enough.  My dad is a great Dad, but he has his bad moments and I was remembering those.  I was able to clean up some more and not cry, but I wanted out.  I don't want my kids seeing the mad side of their beloved Papaw.  We all left and then I cried some.  It's hard.  My mom needs better breaks though.  It was hard for me and I was only there for the day.  I'm still glad that we have him around, but I'm really hoping for him to do better before he goes.  He has to be patient with everyone helping him.  At least we're trying.  We could just leave him alone, but I would never do that to my mom.  I'm super hoping his communication device comes, so we know what he wants/needs!

The crazy continues

Now my dad is short his great nurses-one went off to school and the other was injured, so she isn't coming right now either.  My poor mom is exhausted!  They sent out two nurses from the one place-but they're not even close to up to par and they almost dropped him twice!  Plus didn't clean him well by his wounds!  Yikes!  I try to help out as much as I can on Saturdays when I come into town, but I'm not nearly as helpful as I would like to be!  I fed him yesterday and forgot to clean off his mouth.  Rookie mistake.  I "translated" for my son as my Dad asked him to do things for him.  I was excited I understood him.  It's so hard to understand him!  Sometimes he talks and we all stop everything and see if any of us can understand.  We get it occasionally and it's so exciting!  I don't know what the hold up is on the communication device is, but I hope it hurries up!
We're impatiently waiting on the bid being approved so work can begin on the house.  I love my mom's plan to travel with dad while the house is being worked on!  I know a lot of people want to see him, and now he has wheels and can travel! I'm excited for them!
He's getting used to his catheter.  He doesn't like it, but he's getting used to it.  I asked.  It's super funny when my mom is emptying out the bag and he acts like he's relieved!  Like he can feel it!
He was able to help with the baby blessing last week (which is awesome)!  They worked hard to help him be involved!  I love my dad!

He's moving around more!

With his new van and the wheelchair ramp, Dad's able to go from the main floor to the bottom floor.  His server has been having problems, and he wants to fix it.  Yesterday he used his wheelchair to go down to work on it (by having my sister do what he asked).  It's still super hard to understand him when he talks, but we're working on it!  I love how much he smiles at my kids watching intently!  My baby will just stare at him when he's getting fed.  My three-year-old watched him go to the bathroom. Super fun!

Slouching a little more

He may have terrible posture, but his nurse has been working hard with him and he can wiggle his feet and his hands!  They don't look a terrible purple like they have in the past too!  I love his nurses!  They are amazing!  It was scary putting him on Hospice care, but the work they do is fantastic!  I know mom loves the break that she gets!  It's hard work being a caretaker!  We love every day we get with him!

Ramp in!

It was mostly done when we left, so I'm hoping it got finished!  I love that all of my Dad's service is coming full circle!  I know he loves (loved) doing service, and he never took payment!  Now he's having to learn to accept service, which I feel like he's doing okay with now.  He has at least one person come over everyday to help with some of the basics, and a couple men from church come to help get him upstairs.  It's a long-term commitment, and we appreciate it so much!  I always try and help as much as I can when I'm there, because I know mom has to do so much for him!  Last night I helped with getting him upstairs, then getting ready for bed (although really mom was more training me).  I helped hold him up while mom brushed his teeth.  He kept telling me "Higher!"  It was hard work, because my dad is folding in on himself and he's heavy-even with all of the weight he's lost!
I was excited, because he was able to talk well enough that we could understand him for my son's book!  That way we have his voice, no matter what happens!
I'm super excited for them getting their awesome van on Tuesday (fingers crossed)!

ER visit and scare

So, my dad got his feeding tube and was doing well, so we were enjoying our vacation and then on our last leg of the trip I got a text that I had to have my husband read (I was driving) and I got to speeding.  He was bleeding like crazy and they had to call an ambulance to get him.  My parents love firefighters even more now!  They were there and getting my dad out before the EMTs got there!  It was awesome!  He was at the hospital for several hours before they were able to get it to clot (he's on blood thinners).  About when we got home, he was going home.  Phew!  Talk about scary!
My Dad's sisters (twins) came to see him, since he was told to start saying goodbyes, because he is dying.  I'm super excited that they were able to come!  We got some great pictures of them together!  They kissed his cheek and he started crying.  Poor Dad!  He's already emotional!  One of his sisters was just told she's cancer free, but had chemo, so she has very little soft hair.  It was great to see them!  Yesterday was Independence Day, so we were all over (everyone that could come, was there)!  It's always so much fun when we get together!  I give Dad water, Kim feeds Dad, Mom and Jeff (her brother) adjust him in his seat...  We all have our jobs!
A nurse from the Hospice came to check on him, and changed out his gauze around his feeding tube.  Because he was reacting to the tape and hardly moves, she said that the paper tape was only necessary when he was going somewhere.  So, he got to be without tape for the rest of the day!
He also has problems with the stairs, so now they put him in his wheelchair, wheel him up to the stairwell and then two or three guys muscle him in.  I wish they had a ramp, but apparently the government works slower than slow and he might get stuff in November.  Blech.  Here's a video of the uphill climb.

Feeding tube in

While we're on vacation, my dad saw his doctor that gave my mom and dad the bad news that it is going fast and that he doesn't expect Dad to live beyond December.  We were thinking August, so that's better than we thought!  His oxygen levels are down to 40ish, so he got his feeding tube in on Friday.  Mom is getting used to it.  She doesn't like it, but she's getting there!  My dad decided that since the doctor said he's dying that he's going to work harder to live longer!  So, he's eating healthier, and doesn't want to eat things that could choke him.  I'm super excited that he's trying!

He can move a little more!

On Friday night, most of us got together to learn more about what we can do to help out my Dad.  The lady that came had a husband with ALS that died three and a half years ago.  She told us how awesome massaging oils could be for their hands, feet, and legs.  She also talked about working his range of motion, to keep from cycling in.  My brother had my dad try some things and he could scratch his nose!  It's been months!  He also could "clap" his hands and pick his elbows off the bed!  Seriously awesome!  My mom taped it and posted it, so we could see it!  I almost cried!  I'm so proud of him trying!  I'm also glad my brother asked!  I love helping my dad whenever I can!  He is a great Dad and Papaw!

What I keep telling myself

I keep telling myself how lucky we are, because although his ALS is moving fast, it's still a lot slower than a sudden death when we wouldn't get a chance to say goodbye.  So many people don't get the chance to say goodbye, and we do everyday.  We never know when it's going to be too much.  When he gets sick and his body can't handle it.  When his lungs stop working or he can no longer swallow.  He's supposed to get the tube inserted into his stomach in the next couple of weeks.  He's excited to put his medicine in that way, so he doesn't have to taste those rascals!  He's a lot mad at the list of things they told him to stop eating-white flour anything, white poultry meat, nuts...  Basically, most of my dad's favorite foods.  He said forget it, I'm dying anyway, I don't want to starve!  It won't be much longer before he can't eat, but no matter what he's not eating applesauce!  He really doesn't like applesauce!  My mom ordered a communication device for him that will track his eye movements (or something like that).  He's pretty excited about that!  My sister found a wheelchair bound clothing website, where his Father's Day gifts will be coming from!  It's so hard to buy for him!  I'm excited about this!

Losing the ability to speak

I had a very hard time trying to understand my Dad yesterday.  He kept talking and my mom wasn't there to interpret, so I have no idea what he was talking about.  When he got mad at my son though, I could understand him just fine!  I'm worried about further down the road.  He knew sign language, but that's not much help.  I bought my son a record a book this week and I'm hoping that one of his better days, they can record him.  I know my kids love their Papaw!  It's progressing so fast!  My family ordered a communication device.  I have no idea how it works, but I'm hopeful!

Another week

We were super worried about my dad, because he couldn't put weight on his legs.  It wasn't as bad yesterday.  I saw him slowly reach up to scratch his nose and was super excited about it!  He can't always reach!  We were celebrating my baby's first birthday, so I set a party hat on my dad's head, without the string.  It stayed on over 3 hours.  That's how still he holds.  I put my baby on his lap and had my sister spot him as I took the pictures.  I don't know if he'll ever know his Papaw, so I want to have pictures of him with his Papaw, so he can see what he looked like at least!  Sometimes it's really hard to think about what he'll be missing, but I think how lucky we are to have him right now.  He's still really intelligent and isn't losing his knowledge of us.  We really are getting the opportunity to slowly lose this amazing man in our life.  No sudden car accident or instant death, we're lucky to be able to say our goodbyes.  I keep telling myself that!
My family takes turns feeding him.  My mom will do it and then pass it off to one of my siblings.  He was able to eat a cookie instead of a cupcake (I got both to cover my bases), and he ate the ice cream I bought (I got his favorite flavor from Braum's)!  His appetite isn't completely gone, so that's good too!

 Seriously this gait belt is necessary!

 You can't even tell that he couldn't catch my little guy!

My mom in position (sitting on the walker as she feeds him)

A little training

Yesterday I got some training in what to do to help my dad first thing in the morning.  So, I thought I'd write some of it here.
My Dad's on a CPAP, so that comes off first.  Then pick out his clothes and put his pants on around his ankles.
It takes two people, so I was helping my mom.  I grabbed his feet and legs and she grabbed his torso to turn him sideways with his feet off.  I sat with my back against his as my mom helped him go to the bathroom using the portable urinal.  Then he had to practice his chicken wings in order to limber up his arms enough to get his deodorant on.  He can barely pick them up and I had his right armpit, so he made sure I was careful (that's his hurt arm, so it doesn't go up as high).  After his deodorant is on, then we each put an arm in his shirt after it was over his head.  His hands are pretty hard to maneuver, so it's harder than it sounds!  Then we put the gait belt on under his armpits fairly tight.  Mom held him up as I pulled his pants up.  It was super hard to button, even though he's lost a significant amount of weight!  Once he was zipped up, he got to sit back down.  He wanted to try and walk (he's lost a lot of his right foot/leg control), and so we helped him stand up and get his hands on his walker, but his right hand kept slipping and he wasn't able to support himself at all, so I went and got my brother and then we got him onto his rolling computer chair.  Bill puts his knees to Dad's and then pulls him up and pivots him to get him into the chair.  Then he stands him back up and sits him back down in the right position.  I held the back of the computer chair to keep it from rolling.  Bill pushed the computer chair and I helped with Dad's feet, so they weren't dragging.  Once we got to the stair climber (woot woot), it went the same as getting him into the computer chair.  Stand up, pivot, sit down, stand up to readjust sitting position, fall to correct sitting position.  Then put the foot rest and arm rests down, and get his feet partially on the foot rest, because they won't move exactly.  He works hard to jerk his hand to move the switch that starts him going down.  Once he's down, I'm back at the computer chair, but my brother stands him up and I get the stair climber up past the wall, so the computer chair is ready for him.  I keep the wheels from moving as he sits and then sits again.  Bill has the hard job with the pulling him up and down!  He wheels him to his lift chair and makes sure it's all the way down with the cushions and pillows where they need to be.  He pivots him and sits him down, but he's crooked on the cushion, so he stands him up and sits him back down.  It's hard work!  After all of that, it's time for his 2 pills and his breakfast drink.  He drank some from the Carnation instant breakfast (it's his favorite), and then I put the 2 pills in his mouth, and put the straw to his mouth to let him drink.  He works hard to swallow the pills and then he finishes his drink.  He wanted his laptop, so I put it up fairly high on his lap, put his glasses on, and he gets to work.  I'm not sure what he does, but he's happy doing it!  He has a bluetooth connected to his ear, so he can answer calls when people call.  He swipes his hand at it until it connects and answers.  It's difficult watching my dad go through all of this, but at least I still have him around!  So that's his basic morning.

Hoyer Lift

My dad got his hospital bed on Thursday and a cool Hoyer lift.  While we were over for Mother's Day, my mom practiced using the lift on my brother-in-law.  I'm glad she practiced, because it took a few tries!  We were cracking up!  My poor Dad felt left out, so I made a video of some of the last of it! 

Getting out and about

This weekend my brother and his family came into town.  It's been great spending more time with family!  My sister-in-law is a nurse, so she has no problem helping out and my brother never gets to help, so he's all over it!  We started going through the garage, because we desperately need that space to be clear!  Then we did family pictures, so I'll finally have good pictures of my dad on here!  I also got to take pictures of how hard it is to get him in the car!  I kept a hand up to try and keep his head from hitting the door frame!  The first thing to do is get a gait belt around and ready!  Then get him up out of the wheelchair.  He works to get his feet under him right (he didn't wear shoes at all), then leans forward some.  This takes a good five minutes or so.  After awhile someone just bodily picks him up using the gait belt and gets him in.

We can't wait to get the VA papers  saying he can get a van with wheelchair lift!  He has an amazing wheelchair that he can't use until then!  It just sits in a corner.  We're also waiting for the paperwork to make the house handicap accessible!  Patience is the name of the game!

Stair climber

My Dad got his stair climber in on Thursday!  My brother and uncle put it together in under 2 hours!  My kids tried it out and think it's pretty cool!  I'm inclined to agree!  I love that life will be that much easier getting him up and down the stairs. Mom said his stomach muscles were working a little better the past couple of days.  On Saturday Dad reported that the stair climber was working well and then I saw mom cut up his food.  Mom is working so hard!  She cuts up his food, feeds him, gives him a drink, helps him go to the bathroom (using a portable urinal that stinks) as we all leave the room.  It's hard work.  I'm so excited for our family pictures this week!

Backtracking

 This was back in July

 He was starting to have problems, but was still mobile, even if slow.

 He used a cane for awhile.

 He could talk understandably and hold a baby!

 He was able to go to Restaurants.

 And hold himself and his own bag (back in August).

 He even had a little extra weight to carry around.

 This is my Uncle and husband (his first time) helping him up the stairs.  It's scary dangerous!  I was considering installing a rope and pulley system with a harness to get him up and down easier.

He is very dependent on his walker and we're very grateful he can still use it!

To start off with, I'm the oldest of six kids and my Dad has ALS.  He started having symptoms about a year ago, and already things aren't going well.  There are so many times that we hear later, oh you should have done this a month ago and then it would have been free.  Just in case someone else is going through this, we wanted to give you a little heads up on some things you can expect, some helps that could be available for you, etc.  This is a hard to diagnose disease that is terrible to watch happen to your loved one, but we still have him him with us, and so we're okay!

I won't be the only one writing in this, I'll have my sisters check in and maybe my mom (who is doing her own blog).  We wish we knew more and could do more, but we're learning more everyday!

At this point my Dad has limited mobility, so mainly he sits in his chair all day until it's time to eat or go to bed.  His chair kicks him out and he has to have someone hold his walker in front of him until he is balanced.  Then he can go on the main level.  Getting up the stairs in the split level my parents own is ridiculously hard.  My Dad luckily is well-loved, so he has my amazing mom, her fantastic brother and a terrific son-in-law that help him up and down the stairs everyday.  He has to wear a gait belt, just in case he starts to fall, and they move one foot at a time to get him up the stairs.  We're really excited that the chair lift for the stairs should be in next weekend.  I've already watched the installation videos and I'm ready to install it!  It's about $1400, but the comfort from knowing he won't be falling up or down the stairs is priceless!  I try not to watch when I'm there, because it freaks me out (and I saw him fall at the top once)!  But, better days are coming!

We're also impatiently waiting on the paperwork to get the house redone.  They're going to completely change the family room into a master suite by adding on to the house.  I'm excited for that to get started, because they'll be adding in a lift to that floor!  Then Dad will be able to get in and out of the house easier!

This disease is hard on everyone, but there are helpful hints that we'll be trying to share!  Let me know if you have questions and I'll do my best to answer them (or get more answers)!

Just know that no matter what happens, it will be okay!