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HeatherFeather

Distinguished member
Joined
Nov 30, 2014
Messages
284
Reason
CALS
Diagnosis
10/2014
Country
CA
State
Quebec
City
Tiny town w/no stoplight!
ARGHHHHH! Sorry - just had to let that one out!

I've been taking care of DH only for a very short while so far, compared to soooo many of you seasoned CALS. He was diagnosed end October and has been getting worse so very fast so it's only been 2 months and a bit.

Here's why I'm saying I feel sooooo DUMB! Our local service, here in Quebec we call it the CLSC, had delivered a commode for downstairs since the toilet down there has a step up and DH can't handle step ups when he really needs to GOOOOOO.. So last night, for the first time, he asked for the commode. I happily trudge off to get our new prized possession and bring it back with a big smile on my face (Kewl, I said to myself). I manage to get DH off his popup Lazy-boy chair, shuffle and move his feel to turn and lowered him onto the commode.

Oooooooooo, those prunes... POOOOOOOOOO!

Anyway, he managed to have a huge dump (sorry for being graphic :twisted:). After cleaning him and getting him settled back on his Lazy-boy chair I grab the commode, holding my breath (one thing about me: I never had kids and never baby-sat - LOL!) and go to empty the bowl into the toilet. Well, only part came out and blocked the toilet. Everything finally managed to get cleaned up after finding a sink that would accept the commode pot for cleaning, unblocking the toilet etc etc etc.

NOW I find out that you can buy commode liner bags so you don't have to shovel sh** - That's why I feel so dumb :oops:

Next issue...

We are still living on two floors with a stair climber between levels for our 10 stairs. Poor hubby's getting weaker and weaker. I have to raise one foot at a time so that he can climb two stairs to the landing to get to the actual stair climber. It was pay $4,100 for the straight stair climber or pay 12,000 for one that turns so we opted for the less expensive one and just try to manage the two steps to get there.

Last night, as I tried to raise his foot to get to the landing (he's been helping me raise his foot abit and now I think he's having a hard time even lifting it abit so he's almost a dead weight), he fell forward and collapsed frontways on the stair lift seat. It took all my strength to pull him off and up (he weighs about 180 - used to be about 210 and I'm not petite but not large either). I think eventually we will forget the stair climber and move the essentials upstairs. Even getting him out of the wheelchair to put him into the popup lazy-boy chair takes all my strength as he helps me abit - what will happen when he has no arm-strength left?

That being said, having a harder and harder time lifting him to places, are there portable lifts that we can use? Anybody have any pics to share? For example from the bed to the wheelchair; wheelchair to shower and toilet; wheelchair to lazy-boy chair? Something light enough or mobile enough that I can move it from room to room? (I am starting to have arthritis in my fingers and that doesn't help when he wants me to do things fast but I tell him I can't because of my digits :-(

WOW! Sorry for the novel...

You guys have been so very helpful, what with your replies and what I've been reading on the various threads - I just want to thank you all so very very much and I'm so happy I found this forum xoxo :)
 
Oh, and I forgot to mention - I think he might start needing a bipap machine soon. This morning he called me on our baby monitor to come fix his legs in bed. I rushed up the stairs to help him, then I fixed his covers and asked if he wanted the comforter nearby in case he was chilly. He replied yes, so I fixed the comforter from being in a lump on my side and put a corner of it on my pillow so he could reach it. He started choking scarily and taking very labored breaths, and said I was blowing dust around. I rushed around and gave him a sip of water. Then he started choking again, not on the water, but on the scent of my hand cream (dry winter hands) - ACK! Sorry sorry sorry honey - I'm leaving the room now... I feel like I make things worse for him sometimes...WAAAAAAAAAAAAAAAAAAAAAAAAAAAAA.........:cry:
 
I thought you were going to say that you forgot the put under the chair--that's the kind of dumb thing I might do!

Oh Heather, things are moving quickly. I'm sooo sorry! OK, first of all, I didn't know about the commode liners either, so don't feel dumb! Not that I'd use them since we have no trash collection here--I have to take it to the transfer station, so I'm not putting those bags in the trash! LOL---when the grandbabies were in diapers my first move after they left was to make a trash run. Yes, there are lifts and you need one. Google Hoyer Lift and you will see many pictures. They range from portable ones that you can travel with to larger ones for use in the house and roll from room to room to ceiling mounted systems Tillie has posted videos showing how to use one (among other wonderful videos). I'll try to find them, but perhaps before I do someone else who knows where they are will post. The lift is my next push as the falls continue and it's getting more and more difficult for hubby to get himself up off the floor. At the rate we are going I'll be using the Max Method soon (dial 911 and have EMS pick him up).

You mention lifting him to the shower. Do you have a roll in shower and shower chair?
Sweetie, I agree that you need to get away from using that stairclimber--even without the two steps there will come a time when his back muscles will go and he won't be able to sit up in it. Which level do you enter the house on? Please don't tell me it's a split level with the entry in the middle!

Now here's the safety lecture. You are both going to be hurt, maybe badly, if you don't get the lift soon and make arrangements to avoid those stairs. But you know that, so please hurry.

Keep asking sister--people with more experience than I will give even better advice.
 
Good morning "nuts" - hahaha, I love your posting name!

" thought you were going to say that you forgot the put under the chair--that's the kind of dumb thing I might do!" No but I nearly didn't take the top cover off - oh, I'm giggling as I say this because I can imagine Ron being in a total SMOOSH after pooping on the cover ROFLMAO!

I'll Google hoyer lift to check out pics - thanks. Portable for travel too? WOW - cruise in April coming up (not sure what Ron will be like then, though :-(

No roll in shower. Our local CLSC provided a shower chair and then recently took it away as Ron can no longer stand so I can lift each leg over the bathtub. They lent us a transfer bench but hubby finds it sore to sit on because he's lost so much of his lovely cute round butt (sorry, had to share - when I'd comment on what a cute round butt he had, back in the 'old days' he used to say, "Jealous?")

So I basically have to raise him out of the wheelchair, place his hands on the floor to ceiling helper bar as he grips onto the shower door frame so I can turn each foot so that eventually he's positioned with the transfer bench behind him to sit on :-( I think this procedure takes longer than the actual shower...

As for the stairs in the house, we go in by the basement door and the day/evening is spent on that level. The only time we go upstairs with the stair lift is around 1 a.m. to go to bed. When I get him up in the morning, we use the stair lift to go downstairs for the day/evening. This is where the TV is and the 'computer room'. I usually fall asleep on the couch around 10-ish and Ron is right beside me in his Lazy boy chair, watching TV. He wakes me if he needs help. I have no trouble falling asleep again. Then he wakes me around 1 to go upstairs to bed. I'm not a night person, so I'm like a zombie getting him ready and also that's when I'm struggling with his weight I guess because I'm half asleep. Manage to get upstairs, get him to bed, fix everything for him, have him take an Ativan, put eye drops (glaucoma), fix the fan which is constantly on him (he has these weird hot flashes all the time, and never did before ALS). I manage to sleep a couple more hours then get up and go downstairs near the baby monitor in case he needs me to turn him. Sorry - another novel ... pant pant pant :-(
 
No sorry needed, you are a vivid writer and an easy read! OK, two things jump out at me--consider moving his bed downstairs. Both of your beds for that metter. If that's where you live most of the day, then that makes sense. You will NOT be about to continue using the lift and I know I'd rather be stuck on the level where I enter and leave the house. If you keep him upstairs you won't be able to get him out for long. Many people end up turning the living room into a bedroom so their PALS isn't isolated in a bedroom or because they can't get upstairs. As things progress the unimaginable become obviously clever... Next, that shower isn't going to work for long either. There are a few options to consider, including a very expensive shower chair that slides him over the tub (google showerbuddy), sponge baths, portable showers (I've seen them discussed here), and I've even seen inflatable tubs on line that you roll under him, inflate, and then deflate and roll away when done. Eventually sponge baths may be necessary. Again, people further along in this journey will be around later with better advise.

I so sympathize with the agony of late nights. I've always been a morning person, so I'm wanting to be in bed by 9. Hubby is a night person. He still stays up later and I wake when he comes to bed, then help him out. Last night I heard him fall about 11 (I'm not sleeping very soundly these days). No problem staying awake after that...ARGH (he, on the other hand, fell right asleep after all the effort to get up) I know the time is coming when one of us is going to have to change habits and it's not going to be easy.
 
Aw, thanks Nuts! About moving his bed (actually our bed - Queen - no hospital bed yet - he says he doesn't understand why a hospital bed would help him - thoughts on that?)

The shower is upstairs - we only have a small powder room downstairs and the washer dryer so that's really not an option. Think we'll have to move the TV and components upstairs to the livingroom; move some of the extra stuff from the livingroom downstairs. Then move our computers and desks upstairs to a small spare room and move the furniture from there downstairs. That way he'll be near the shower too. Also, we will have a ramp built for outside so that he can come into the 2nd floor with his wheelchair and forget about downstairs.

I've been mentioning sponge baths to him and he knows that's coming. I'll have to check about what to use to wash his hair. I don't know about an inflatable tub - I'm so ditsy that I can see myself making a total flood in the bedroom - LOL!

You're a morning person too? I love my early mornings. Ron used to tell everyone that I'm up before the roosters even THINK of waking up - LOL! My hubs is also a night person. He can't understand why I'm having such a hard time with him at 1 a.m. and being so half-asleep...

Oh, I sympathize with you too about the difference in sleep patterns, Nuts. I can understand about not sleeping soundly too. He woke me up to help him twice, during my nap in front of the TV, once to fix his legs and another to go pee. Then during the 'night' from about 2 until the time I get up around 5-ish, he grunts and groans so this wakes me up enough to fix his legs a couple of times; and another couple of times when I'm up and downstairs near the baby monitor. So many changes...so little time :-(
 
Found this on YouTube:

Search: "Hoyer Lift Transfer Training" by mypt4health (seems like the link I put up didn't work here?"
 
Look up liteshower. One of the PALS on FB recommended it strongly
Re posting links. They go to automod. They will show up after review if they are allowed ( you tube generally is)
Links to commercial products are not neither is ANY fundraising, no matter how worthy. Links to unproven treatments, cures etc also are not allowed ( yes this is a value judgement)
Also certain words trigger automod, again your post will show up in time. There is no list of words, some we have figured out, sometimes it is a mystery even to me. Occasionally you will see a post with a space in the middle of a word. That is to try to avoid auto mod on a known word
 
I almost called 911 this morning. Ron wanted me to get him out of bed so usually we start with his ROM exercises. I started with one foot and he started gasping for air and said "hurry up!" So I reminded him it takes about 15 minutes for his exercises. He continued to say "ok hurry up" and then said, "OK OK STOP !" "GET ME UP !" I ran around his side of the bed and tried to raise him all the while he says he's choking on my housecoat. I managed to get him sitting and he's still gasping for air and is cold and wants his robe (he sleeps commando and always has). I try to put his robe on but he starts gasping even more with his throat sounding like it's closing - you know the sound you make when you're choking on a candy and trying to breath in to catch a breath? He says now it's hand cream on my hands. I smell my hands and don't smell anything so I run to wash my hands and rush right back. He was better once he was sitting with his robe on and having a sip of water. I was SOOO close to that 911 call... Bipap machine next, I'm sure... He's definitely getting worse :cry:
 
I was in exactly the same situation you are. My wife couldn't stand candles, lotions, perfume etc. Also needed a fan on 24/7. Get the bipap TODAY. Don't let anyone tell you it will be a few days. You don't want to do the 911 call. I watched my wife go into respiratory arrest at 3 in the morning. Not fun.
 
I should add the bipap will give him an immediate sense of comfort. It won't help the choking but will resolve the air hunger right away.
 
All that Mona describes in the video is overwhelming! My care needs are not minimal but not quite like what she describes. Here is our typical day...

If we have nothing scheduled for the morning I sleep late. John may sleep in a bit but he is a morning person. Getting me up for the day begins with crushing my meds and putting them down my feeding tube along with breakfast -- a half can of Jevity. Then John washes my lower body. We don't do this every day but it only takes about five minutes with a soapy washcloth, a wet one for a rinse off, and a hand towel to dry. No basin of water, no hassle.

Next he puts my slacks on. They are open in the back and go on fairly easily. Socks on. Trach cuff is deflated for the day and I am suctioned. Lifting sling put under me and I am lifted up in the air with a ceiling mounted lift system. Bedpan under me for a quick pee and then he puts my shoes on. He positions my power chair along side the bed (a hospital bed that allows him to raise or lower me so his back doesn't ache from bending over me) and then he moves me into my chair.

Next it is into the bathroom. I lean forward over the sink for an every other day shampoo. He brushes my teeth, washes my face, cleans my feeding tube and trach area with soap and water and puts on a fresh gauze square. I have a Bivona trach so there is no inner cannula to clean or replace. Big time saver! On bath days he washes my upper body. He blow dries my hair, and if I am going someplace where I want to look a little extra nice, I may ask for a little make up (he won't attempt mascara!) and earrings. Finally he gets my top half dressed and I am ready for whatever the day brings.

Seems there is always something. He works a couple of hours two or three days a week and I go with him and hang out in the backroom with my laptop. I really wish he could get away without me but this little job certainly wouldn't cover the cost of someone to stay with me at home. We pick up our granddaughter after school twice a week, and always seem to have appointments or shopping to do so it is a real treat to have a day we don't have to go anywhere!

When I am at home I am parked at my computer desk. I have a call button I can press with my head or I can summon John on his cell phone via Skype on my computer. He is free to go outside to mow, spend time with neighbors, or whatever as long as he is close enough to get home in a couple of minutes. In the evening a neighbor who knows how to suction me will usually be available if John needs to be gone for a while. She doesn't need to stay with me, just hurry over if I beep or call her.

About on the big vent problems Mona mentions in the video, the frequent need to empty the water from the vent hose. I don't have a humidifier attached to my vent. Humidity is supplied by a golf ball sized HME (Heat and Moisture exchange) thing in the vent hose. It keeps my air warm and humidified with absolutely no maintenance or problems. I am not certain why the man in the video requires a big humidifier but maybe with less humidification he would need less suctioning!

I don't usually need suctioning very often during the day, maybe three or four times all day, but I do get hungry, cold, have to pee, etc. so I do have to call John away from whatever he is doing fairly often. But I frequently go hours without bugging him. Lunch is usually something easy for him to make or even another Jevity if he is busy. Sometimes he fixes a more time consuming meal for dinner. Bathroom breaks are a nuisance but are greatly simplified because I use a female urinal rather than the bathroom trek, sling/ lift/ toilet routine. Bedtime is a quick face wash, tooth brushing and into jammies. Sling and lift over the bed, bedpan(my innards have gotten so used to my routine that it is rare that I need to have a bowel movement during the day). tuck me in, add a couple of microwaved rice bags since I always get chilled going to bed. Suctioning, a book on the CD player and, hopefully a couple of hours of sleep. Nights are actually worse for us than days. Lying down lets my lungs move secretions up more easily so suctioning is more frequent. I need to be turned at least a couple of times as well or my hips or shoulders hurt. Thankfully I rarely have to pee during the night. But sometimes I just don't sleep well. The only sleeping pill that worked well was Ambien but it gave me major diarrhea! So, unless I am dead tired, I wake John at least three times a night. Not good!

Sorry this is so long winded but I felt it important to give another possible (though not probable with fast progressing ALS) view of life on a vent.
 
Diane, if it is not already there ( I did not see it just now) perhaps you could put a version of this on your website?
To me it seems very helpful and reassuring thank you
 
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