Hold on Tight...

I have a feeling there will be more dramatics. It’s a tough situation in anyone’s world and nothing anyone wants to happen.

The core thing though is that the deed of letting go of the apartment is done. There is no take- back on that piece so now we go forward.

I know what you mean Lenore, there will be more as her history tells you. But as you say getting that decision and apartment sorted is permanent so that's done. This is huge for you, I'm still grinning to think it got done.

Lenore, you never know your mom may find that she likes it there. Having just moved my folks into a LTC facility, they like it. The biggest complaint is the walk from their apt to the dining room. They need that exercise.

Hugs as she adjusts.

Random note, GeeWiz condom caths are great. They are expensive but with MD order Medicare will pay. Also super easy application. For Home Care, it is the best thing I found since the portable shower.

In harsher news, I had a horrible dream last night. I sleep in our big bed upstairs now, Brian is in the big recliner downstairs. Every night Is that space where I saw him for ten years. Well, last night I dreamed I was looking at that space and a disembodied hand with a knife carved “ALS”in the mattress where he use to lie. I then saw and felt him from when the symptoms started, how his muscles jumped.

The beast chased me to sleep.

Hi, Lenore. Thanks for the tip about GeeWiz caths.

I'm so sorry about your troubling dream. Can't even get a break when you're sleeping - sheesh. Thank you for all you are doing for Brian.

Regards,
Bill

Some dreams can be truly disturbing.

So glad the condom caths are working for you!

With the condom caths, it occurs to me that an important point may be to beware the cheapest brands. GeWiz makes a type with a very flexible, roll over condom and a soft tape that does not stick to hair.

I saw some cheaper brands with harder “condom” pieces and questionable adhesives. They probably hold well, but did not look too comfy.

Lenore, I am so sorry for the terrible dream. I had many bad dreams too, and sometimes it felt almost better to stay awake. Your dream was particularly horrible - I hope you are able to sleep better in the coming nights.

So in a couple of days Brian ended up with a regular catheter because his bladder just shut down. Stopped being able to urinate. Nurse out at 1:30 am to insert. Now it’s the bowels. He got so backed up he had an enema today and still needed some manuel removal and there is still much re there. Doing a Senna and Miralax one two punch now.

The hospice nurse this weekend acted like she had never heard of opiate urinary retention and blamed it all on ALS. No matter, he will be using opiates for the duration now so stuck with an indwelling cath either way.

Lastly, the Boyer lift thing has had a million issues and I still don’t have a functional one. He lives in the fancy recliner. We even deal with Depends and poop there now. He can transfer still as max assist. He did this morning before the poop dig. It’s just scary and he hates it.

Oh, and I am doing budgets at work this week. Yikes.

I say budget a nice big lot of time off that will show as though you are at work ....

Seriously, this disease never stops giving and no one understands except those of us facing it. Even then the variations are so huge. Thankfully we never had any bowel or bladder issues. But we had FTD so comparisons don't mean much do they - it's all a pile of crap. xxx

Lenore I am so sorry you are facing all of this now.

Brian too ended up it’s urinary retention and has had an indwelling catheter for a year and a half now. In many ways it makes some things easier. And the bowel stuff has been that way for us for a very long time.

With the bowels, at least in Brian’s case, it seems that those muscles just gave in. Even with whatever bomb we use, I generally have to go on a mission to clean it out. Sometimes we get lucky and I can press on his belly and that will be enough, generally though it isn’t. I’m sorry.

This disease does just keep giving and giving and not in a nice way either.

Hugs

It’s so odd. You see PALS who can’t move hardly at all with full control of bowel and bladder and then my Brian seems to have lost both at once. Speech and breathing clear as a bell after two years, like a healthy persons. What a crazy disease.

I know Lenore - it's so hard when someone comes newly diagnosed and says - what is going to happen to me. They must wonder if we are mad when we say - we can't say what or when it's all so different for each person.

I always say - the only predictable thing about ALS is how unpredictable it is. Yet that still doesn't really get across just how totally freaking unpredictable it is! Almost like no rhyme or reason still doesn't say it.

Hi Lenore. I tried to write to you last night, but my internet connection went POOF - and so did my post!

I too am sorry you are going thru all of this. I know the drill, for sure. My Dave could also talk (chew, swallow) almost as well as any unaffected person, but his limbs were almost gone, bowels began needing manual assistance months before he passed, and he felt like he had to urinate very often. Sometimes he could sleep throughout the night and have a really huge urinary void (like 20 oz) in the a.m. - other times he would think he needed to urinate quite often with minimal results. Towards the end, it seemed like almost everything in his body was failing except no bulbar symptoms and only mild memory deficits.

What is the issue(s) with the Hoyer lift? Have you gotten a used one via hospice? If so, they need to be pestered ...... maybe shoved to get you one that works! We got ours thru the ALS association. Although it was a loaner it was brand new. I'm thinking you should still be able to get a loaner from ALS even if Brian is on hospice. I hope you get that worked out, as it would enable you to move Brian around more for a change of scenery. Good luck with this, and please tell us what the Hoyer is not doing properly? Maybe we could help? Big HUG!

Lenore - my Brian’s speech was pretty much the last thing to go on him as well. Not that he doesn’t keep losing now, but he was fully paralyzed, except the head area. We had been assisting his bowels for years before he lost his speech. And that included talking around the trach for at least 4 years. I thought maybe it was because he played the saxophone since childhood and those muscles were very well developed. Who knows, nothing is predictable as Tillie says.

And He also lost his ability to hold his urine several years before his voice as well. Its a strange disease.

Hugs to you