Get back up, dust myself off, and start all over again.....

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Buckhorn you are lucky Dave will do things. Brian isolated himself after being in the wheelchair, very few things he would attend. He ended up isolating both of us. :(

Hugs,
 
168 hours in a week: How I spent many of mine.

Bathed/showered, assisted Dave with bowel movements twice (yes, many of you know what that means, as Dave can no longer "bear down" and pass things on his own), shaved him every other day, clipped his fingernails, trimmed his beard and mustache, gave him medicines every day, flushed his PEG tube every day, shopped for, prepared, fed Dave every meal, cleaned up after every meal of the day. Changed his incontinece underware and pants at least 4-5 times this week and gave him a "bed/bowl bath", and put on new t/shirt & pants. Transferred him manually (max-assist, stand-lift/pivot transfer) every day to either wheelchair or shower/toileting chair, then back to recliner or bed) and made sure he was outside most days on the deck for evening and sunset/wine/talk.

Did at least 4 loads of wash.

Respiratory therapist visit on Wednesday; 1 hour.
ALS clinic this past Thursday - 3 hours.
Took Dave for a haircut after ALS clinic
Took Dave out to early dinner after haircut.

Used the power-washer my neighbor Chris loaned me to power-wash the back patio (stone) all windows on the house, window screens & a few other items.
Windexed and squeeged all the windows on the outside.

Mowed for 1.5 hours.
Weeded some (not well)
Fertilized 104 potted plants (plus several in-the-ground plants). Also watered everything again today due to very high temps.
Clipped off / "dead-headed" many of the potted plants and roses.

Skimmed & vacuumed pool, checked chemicals, backwashed filter, shocked/algaecide pool twice.
Filled bird feeders 3 times.

My back hurts ......... arthritis and wear & tear.

On a positive note, I did go into our pool (& took 2 beers along) tonite at about 7:30 after a long day of work (see some of above, HaHa!). I took our Springer Spaniel "Snickers" with me and we floated and hung out for about 45 min. Then I went to Olive Garden for take-out because I was fried (it was 95F here today with 85% humidity - hard going with outdoor work).

I am now sitting on the front deck with our new propane gas "firepit" going and having far too much to drink (& having pitty-party I guess?)

A week in the life I suppose? I sound like I'm complaining......, but I'm so glad Dave is still with me and I am thankful that he can still eat, and talk and enjoy our outtings. I just got done recounting the above to my brother (via email) who is somewhat clueless of what our life entails. He kinda/sorta thinks I'm not all that busy 'cause I'm no longer "working". HaHaHa p what a hoot!:mrgreen::rolleyes:
 
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I'm sorry that is the case Sue. Dave has been amazing - truly! I'm afraid I would have been more like Brian, had it been me (with ALS). But Dave is not very self-conscious and has never been one to give a HOOT what others think!
 
Buckhorn somehow you managed to squeeze 186 hours into that week :lol:

Yeah my Chris considered that he didn't take much effort and that he wouldn't be 'high needs' until he was 'bedridden'. Yeah right!

Hope that way too much to drink was just right xx
 
That is a good synopsis for you brother. You truly are the sparkling one-woman show. Pace yourself!
 
And I bet there were things you did you forgot, too! It's amazing to see it all written down. I don't think anyone really gets it unless they stay at the house for a couple days and see us constantly in motion. Glad you squeezed in a swim with your dog,
 
Wow.... I could just substitute Dave’s name for my hubby except my hubby is now bedridden, but there are not enough hours in the day! I also ‘assist’ when the Miralax doesn’t work...I’m very fortunate however to have help from my girls since I still lo wrk...but it’s still an enormous struggle... especially emotionally with the loss of dreams and companionship and fear as to what lies ahead....
 
Buckhorn that sounds about right, plus the million and one other things you forgot to record, like your own showers, sleep in there somewhere, eating yourself, while or after you assisted Dave. I’m guessing you bought groceries and other necessities in there as well etc, etc, etc. Hugs, you are brave for writing all that down. It scares me to think of doing that.

Hugs,
 
Hi all, thanks for your responses. To tell you the truth, I was more than a bit embarrassed after I sent that (& thought better of it later - tried to "edit" it but, too late!). I'm not embarrassed about the details of Dave's daily needs/care. We all get that (or will get it). I was embarassed about the "tone" of my comments, and sounding whiny, etc. I do love Dave and I'm glad that he is still with me. I want him with me as long as that is tolerable for him and feasible. It was just a tough (& very hot) week, plus I got an itchy rash from pruning some bushes and MAN that was bugging me a lot with the heat. Well, that's my story and I'm sticking with it (for now).
 
Buckhorn what I found was that it was good to let the steam off with my fellow CALS. Sure it sounds like all kinds of things to someone who doesn't know what a CALS does, but you are with us!

It allowed me to then turn around and go back to my man ready for the next round.

So don't apologise, just know that we get it, and we know you are one helluva CALS :)
 
" I do love Dave and I'm glad that he is still with me. I want him with me as long as that is tolerable for him and feasible"

Nothing else matters.
 
Buckhorn you were no more whining than I ever am in my thread. What we experience is very difficult. We have to get it out, it’s far worse if we let if fester. Just been sitting here having a similar convo w/my GF. She gets it. She helped me with Brian and cared for him while I worked.

No regrets. You are an awesome CALS. Dave is very lucky to have you

Hugs
 
Buckhorn,

Today has been one of those days for me. I've said before, I'd like to wear my daughter's Go-Pro camera one day, so that "the outsiders" can see a day in the life.

Love him dearly, but some days, it all just wears me out. Here's to just putting one foot in front of the other, again ( and again and again...).

Hugs!
 
Wow. I just responded and then saw a reference in another thread to Dave passing.

I'm in shock. Going to look for for info now....
 
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