Hold on Tight...

I'm sure everyone would benefit from your experience with condom catheters Buckhorn!

Lenore, you will never be the same again - it doesn't always have to be a negative. I hope you enjoyed that meal as you obviously needed it.

Hugs Lenore, another one of those steps we all hate to make.

I will suggest that you add some tape around the comdom cath, not on his skin, but on just below that, but above the tip. These bad boys have a tendency to slip off. The tape helps to a point. You might also want to put a waterproof pad on whatever chair he’s using, just in case. I bought the nice cloth kind on amazon.

Hoping your steak was awesome and you fully enjoyed that dinner.

Hugs,

Hi Lenore,
I’m glad you spoiled yourself with a nice dinner! You deserve it!

Good luck with the condom catheter. It’s a hard step to have take but I’m sure it will be a blessing. I tried to get my PALS set up with one but it didn’t go well. The nurse who came didn’t prepare the skin properly or do enough hair removal. It got stuck and getting it off was very difficult, and he was very unimpressed. I know that if it’s done correctly they are great and will save you a lot of hassle. Unfortunately my PALS wasn’t willing I to give it a second chance so it’s been me and the pee bottle ever since.

The condom thingys are great even with a little remaining risk. My PALS was looking for a solution last fall to be able to play a DJ set one last time in a bar without accessible bathrooms (in Germany that's the standard). It worked great the first time without a dry run (pun intended) first. Using it for something that was important to him made it likely easier to accept. And when last week a nurse was sick and we had no aide for over three days he saved my sleep and volunteered to wear one at night.
It's not a 24/7 solution, it's painful to remove and bad for the skin. But whenever there were outings or there are guests and a lot of action he wears one. If he's not impressed and you really want a break from the pee bottle you could get sloppy and spill more, that might drive the point of independence home.

I just spoke with a PALS/CALS who have been using condom caths for part of virtually every day for about two years and love them, so here's hoping it goes well. We should have time to experiment this weekend. At this point, getting to the edge of his recliner to use the urinal is more of an issue even than his hands.

Friday morning we have "official" care conference with mom and will discuss the reality of long term care some more... She was already starting to push back (I expected that) but when she hears she can stay in the same facility as she has been as a transitional care patient, BUT will be in a shared room in an older part of the building I am afraid the proverbial "H" will break loose.

In other news Brian says he is getting worse by the day in hand strength and he may not choose to go to January if too much more of his quality of life is effected.
One step forward, two steps back... I have a somewhat better day than suddenly feel like I have lost life itself while I still breath. THEN, it looks a little better again. Brian was very, very upset yesterday about a political speech he heard. Then I talked to him at work and he said he heard another speech that made his day, made him feel so very much better.

I actually had to run to a back office because I started crying and I told Brian I loved that he cared so much. I too was suddenly reminded that there are things out there bigger than us, and some of them are beautiful. I was reminded of the things Brian has devoted much of his life to.

I have made and we even discuss some of my plans for my life going forward after this. It feels messed up and good at the same time.

Hugs Lenore,

All of this is so difficult. Some of it does feel good, then we feel guilty for what feels good and then that feels bad. It’s such a mixed bag.

I’ll be thinking of you as you deal with your Mom and LTC. Hopefully she will be more receptive than you think.

hugs

It's messed up that he can't be in your future like he is now. Good you guys are looking forward together.
Today I walked my PALS through the steps after his death as much as I have it figured out. That I probably won't let him be hauled away instantly, that after the funeral everyone's invited to our apartment to listen to his record collection and finish off his booze. We discussed who might read a text he's writing for the funeral. And we also talked about what I'll do and he encouraged me to travel to the ocean and see friends. Life goes on and I want him to know that he'll always be a part in my life.

I hope you don't get too caught up if all H breaks Lenore.

Your man is the best, I just don't have words xxx

I have lost someone very suddenly, and while honestly sometimes I think it’s preferable in many ways the only advantage is this is time to plan and reflect. I do appreciate it.

Yes are these guys amazing or what? The PALS sometimes just take your breath away with awesomeness.

So today we had the care conference with my mom and I listened with baited breath when a Social Worker actually said the words "So, even if you continue to progress in physical therapy, your cognition is not in a place where it would be safe for you to live alone. You can start with Long Term Care and then at some point of you regain enough mobility go to an Assisted Living, but it is not safe for you to go to an apartment alone". Ahh, the "cognition". I was in denial about that myself until about January. It's not one of the usual dementia conditions but something is wrong and has been for a while. Kind of a relief to hear it acknowledged.

My mom did not react with too much outrage, but she had the quiet meanness, the kind she had 30 years ago and probably 60 years ago that she displays in polite company. Her family she always just ripped into, no holds bared in private. In this situation she just said " I think because of my daughter's situation with her husband she wants to have me taken care of and not think about it." I said right away that this decision was not being made by me nor was it about my husband, it's a medical decision that she needs Long Term Care. So, here we go. Good times.

Hearing the cognition thing from somebody else backed up your observations and I could image making it sink in a little more as an unalterable reality.
Some mother's might say that exact same quote in a completely different tone, phew.
You've learned not to rely on her for emotional support. But how do you want to support her without her cooperation?
Good times indeed... Stay strong!

You got through it at least for this part. Were there any actionable outcomes?

She signed the notice to vacate her apartment and gave me the check to pay the last months rent. No fighting, thank you God.

Oh wow, serious happy dance here!!!!!!

Wow, Lenore - I'm glad your mom is not giving you one more thing to worry/fret about and is being reasonable regarding the need for observational care.