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Jrzygrl

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She is just adorable! I'm so glad she is bringing such joy to you and Darcey both. Now you are making me want to go get a puppy!

And, oh, my big 70+ lb love-bug mutt is now hiding in the dark bedroom because we are having a thunderstorm!
 

JimInVA

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Prior to Elise's arrival, I didn't have enough time in a day to do all that needed doing. Since Elise, I'm falling even further behind. It is very frustrating that I can be a blur of movement, moving from this task to the next, and still don't fulfill each new days' needs. There have been times in the 4 weeks since Elise came home that I've wanted to slap the crap outta myself. What the hell was i thinking?!?


I'll find a poopie on the floor. I don't yell or get mad at Elise. It wasn't her fault. I obviously missed cue to take her out or I'm not watching the clock well enough. And so I'm challenged to figure it out. So as I'm cleaning up (and that's much too easy), I think about what I need to do to be better.



Then Elise will want to play... but I simply don't have time for this. So she plays by herself... and I can see that she's having quite the fun time doing so. The next thing I know is I'm down on the floor playing with her and we're both having the time of our life! Eventually, I am again reminded that I have things to do and return to them. But I return with a smile on my face and new purpose in my step.


I miss the days of calling it time for bed and simply heading off to bed. These days it can be a 60 - 90 minutes to move Darcey from her PWC in the family room and ultimately have her all tucked into her upstairs bed. I then tend to myself, crawl tiredly into bed and put my earbuds in. I need somewhere between 30 and 60 minutes of YouTube, Netflix, Amazon or HBO to help me settle down and unwind enough to sleep. And as finally reach the point of turning me to the "off" position, Elise climbs up on my chest and gives me an "I love you daddy. Nite Nite!" kiss. The little girl that I thought had been sound asleep still had one ear out for me. I lay back, close my eyes and find that I have a new smile upon my face.


I am now more challenged for time than I was before Elise. But I've come to recognize that I often walk a line of depression that I've refused to give in to. This is not a fun time in our lives... and for me, it is an enormous amount of work trying to juggle home, business, love and ALS. But there is a new balancing force in our lives.


I've seen Darcey smile more when I make the time to let Elise sit with her in the PWC. And that makes me smile (even if I have to monitor that Elise doesn't fall to the floor). I've noted that I've smiled more and have genuinely felt fuller of heart than I have in awhile. And I have a renewed sense of purpose when tackling the overwhelming number of things that have to be done and for which only I can accomplish.


Kids! They take time and can be a challenge. But the reward for being a parent manifests itself in so many different and wondrous ways. And I already so love this beautiful little girl, Elise!!


My best...


Jim
 

Narrowminded

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Jim Oreo does the bells as well. It was so easy to teach him.

I totally get about not having enough time for everything. It gets that way. Oreo always wanted to sit on Brian’s lap in the WC. We would put a pillow on his lap and the dog would lay on the pillow, might help you feel like Elise is more secure.

I’ll be joining you in puppy duties as I’m getting a new one next Friday.

So happy she is bringing you joy in the midst of all the struggle.
 

JimInVA

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Sue,


Congrats on the new puppy. What can you tell us? Have you picked out a name, yet? Maybe we'll have to schedule our pups for some play dates... can always do video conferencing with our smartphones! :)


Elise likes sitting on Darcey's lap. The problem is that she's still a bit young for a fall from 4' up. So I have to stay there to monitor... and I only have but so much time to do that. Elise has begun to ask to ride with Darcey when we move from the family room into the toileting area. During those times, she stretches out and seems to understand that she needs to be careful. And she loves nestling between Darcey's legs on the bed.


Anyway, thanks for sharing the new puppy info. I am really excited for you! :)


Jim
 

Jlynn

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Jim, I got my girl Mazie Mae 6 days before my youngest left for college as I was then an empty nester. I remember thinking "what have I done?" and I wasn't even caring for someone with ALS at the time so I can only imagine how you feel. Being an attentive caregiver is exhausting. Taking care of and teaching a young pup can be exhausting. Put the two together and ughhh! As Elise grows she will require less of your attention. Hang in there and just soak up the times when she shows you how much she appreciates all you do for her such as her goodnight kisses when you think she's already sleeping and not thinking about you. She is. The payoff is worth it all. Hugs to you and Darcey.
 

Narrowminded

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Jim, my new puppy is a German Shepherd. I had them before Oreo my little Havanese. I’ve missed having a shep in my life. Our last past right before Oreo came home. I thought they’d be together. I had to get Oreo trained before adding another and then things were a lot more downhill. I knew I didn’t have the time and attention to do it before Brian past. I will name her Willow. I will put up a pick on my thread of my last shep and of the one coming, don’t want to hijack.

Enjoy your day.
 

JimInVA

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Elise has done well at using the "bells" to tell me that she needs to go outside. Note, however, that "outside" doesn't necessarily equate to "going potty". In a few days, Miss Elise will be 4 months old... and she's still challenging me with having to clean up from those times when she didn't ring the bell... or, perhaps, when I didn't listen. Kids! Sheesh!!!

I've been having difficulties recently with a hip that doesn't like me. This is on top of the back issues that have challenged me over the last nearly 20 years. In 1999, I fell while rock climbing (while on an all-night Boy Scout adventure) and broke my back. With Elise needing to be walked every hour or two, my right hip has really begun to complain. I've had moments of difficulty wherein I thought I was going to have to quit walking and sit down where I was at. And I've begun to have difficulty sleeping at night... being able to only sleep on my left side.

As many of you can testify, being an ALS caregiver can put some unexpected demands upon one's body. For some time, I've said... "I'll get my back fixed after I'm no longer care-giving and have the luxury of being able to take time for surgery." But with a hip that daily seems to get worse... and recognizing that I can't be a good caregiver if I can't walk or sleep... I decided to look into what was going on. I put a call into Billy, a long-time client and friend, who is also a neurosurgeon. Billy sent me for x-rays (2 of the hip and 2 of my lower back) and quickly scheduled me into his office.

This last Thursday, I visited Billy's practice and he showed me what he'd determined from the x-rays. There was good news! My hip looked okay. If anything, there was only some early indicators that might eventually point towards arthritis... but for today, was not an issue. And he noted that the titanium hardware that they'd used to hold my back together while it fused back together, still looked to be without complications. YES! "So what's causing my hip to hurt so much... and is causing it to keep getting worse?" He pulled up another x-ray and showed me the problem.

Apparently I have something called a "Grade 2 Spondylolisthesis of L5-S1". This is a condition wherein the disk between the Sacrum (S1) and the bottom-most Lumbar (L5) degenerates and allows the S1 and L5 to move out of alignment. Basically, they begin to "slip" apart. A "Grade 2" is where the separation (slippage) has reached a 50% misalignment (or thereabouts). That slippage is pulling on things that wouldn't normally [shouldn't] be pulled... and that is where the pain in my hip is originating. He wants to do surgery, now... as waiting will only see it get worse.

Billy was the first one to act to help Darcey towards her first evaluations when she began to have problems with her back and with walking (first symptoms of ALS). When she couldn't see the next doctor (a neurologist) for 3 months, he brought her into his office for initial testing and then arranged for her to see a neurologist the very next week. So he's followed on our ALS journey from the earliest of days. He understands that I'm Darcey's full-time caregiver... and that thinking about surgery is a very difficult prospect.

So, for the moment, we're going to just tackle this a single step at a time. In 9 days, I'm having an MRI done. This will allow him to better examine exactly what would need to addressed during surgery. And if I can't find a way to make surgery something that can be done, now... he's going to send me out for an epidural to help tackle the increasing pain and to buy me some additional time. But he's expressed that he really doesn't want this surgery to be put off for too very long.

If I had time, I could probably find a whole slew of reasons to become depressed. But I can already see that I'm going to have to do what I always do in such situations - identify the problem, figure out what needs to be done and then [somehow] find a way to make it happen. At the moment, all I can do is shake my head. I think it is going to be a far more interesting 2019 than I imagined. Anyway... thanks for letting me share.

My best to you all...

Jim
 

Narrowminded

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Jim I am so very sorry about your back. Yes ALS puts so many demands on the CALS body. And I understand about trying to care for Darcey or even arrange care for her if you definitely need to get the surgery. Do you have someone(s) that could care for you to allow you to do this? Add in the puppy and it’s quite a mix.

I have to agree with Billy, putting it off will not help anyone. That said, I sure as heck don’t know what I would have done if I had to have surgery in the last couple of years with Brian sans help.

Praying for you as you figure this out.

Hugs
 

ReginaS

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Oh my! Difficult decisions.
Best of luck with finding something that works for you.
 

wishmobbing

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Oh boy, that disk is trouble! So sorry you're in pain and facing a surgery/caregiving crisis. Sending heaps of strength!
 

KimT

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Jim, I'm praying for you.

You are such an amazing husband and CALS.
 
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