The Bathroom

[berniec74]

Does anyone else who has now lost the ability to use the bathroom alone have any words of wisdom? I live with my brother and sister-in-law and have a part-time caregiver but this issue is literally making me crazy.

I worry constantly about when I have to go and who is around...people try to tell me to be on a schedule...really? I'm so anxious I'm not drinking enough fluids. I am advised not to even consider a cathedar as it opens up lots of room for constant infection.

My ALS as affected my legs, left arm and starting on my right arm. I am not using a Hoyer I actually transfer from my power chair to my shower chair and then I am pushed over the toilet. With my arm strength going this won't last too much sooner.

So frustrated. I am supposed to go to a hotel next weekend in an accessible room but the girls with me really aren't skilled in transfers. I do have a female urinal...tricky but it has worked when I tried it previously.

How does one start to relax? I feel silly but it's a major obstacle for me.

 

[Atsugi]

I'm really sorry you've reached this stage. Perhaps there will be several different solutions.

When my PALS was unable to complete toileting on her own, I held her steady on the toilet and then wiped her afterward.

You've got to keep your water intake up and eat the best you can, else you'll find yourself dehydrated and undernourished as well.

 

[Barbie]

Bernie it is not silly at all that you are worrying about this. I completely understand how you feel, but you definitely need to drink plenty of water and stay hydrated--those pesky UTIs can happen from not enough liquids and holding too long also.

I will tell you, when my husband first started needing help in the bathroom, it was so tough on him and he was so embarrassed. it took some time, but he got over it--we all pee and poop exactly the same, you know?

perhaps you could think about the ladies you are traveling with next week, and talk to one who is a little more sensitive to your needs? Maybe she could come and do some training on transfers before hand and be your "bathroom buddy".

Have fun on your trip!

 

[berniec74]

Thanks for the feedback! My girlfriends are ok to help this weekend. I am actually more concerned about regular days.

 

[ottawa girl]

Bernie,
I sooooo get what you're saying!

I used ' freshette' for awhile. It's a good product. If you can stand for a short while - it works well. Especially if the toilet is low and you fear not being able to get up. You can use it sitting down on a bed or PWC- but practice with a pad under you! ( experience talking!). They also have collection bags, but I've not used those. Longer term, I am thinking of catheter - make it easier on everyone... I do wear depends...but never have ' let go' - i call it psychological warfare on my bladder.

Enjoy your trip!

 

[PennyK]

My husband used a "condom cath". Yes it is what it sounds like. It goes on like a condom, but has a tube connected that drains into a leg bag by day and a larger night bag by night. We especially used it when away from home; ie clinic visits, long car rides, etc. It was very helpful for my husband and me - especially if he was going to drink beer!

 

[affected]

condom catheter is a bit difficult to fit to a woman unfortunately

 

[berniec74]

I have two female urinals...one is the Freshette...still practicing! :0 And yes, I know to use pads. I am unable to stand at all and my left arm is extremely weak so it takes me getting to the edge of my power chair and/or manipulating the recliner to get it in a "doable" position. Guess I shouldn't give up on these options yet.

 

[berniec74]

Penny...I wish I could use the condom cath! especially since I too like to drink beer

 

[adozi]

There are no easy solutions for ladies, unfortunately. You are going to have to depend on your cALS. It sucks. but on the very slightly plus side, you can still show them how to use the female urinal. Have you heard of supra pubic catheters? They are much safer than urethral ones.

 

[jrr815]

Berniec74, I completely understand what you are saying. I myself am concerned about the same things. I am a divorced dad and I have a 16 yr old daughter living with me and I am horrified to think of that situation coming up where I have an accident and she has to clean me up. I guess I can try to "schedule" myself to whenever I end up having a caregiver look in on me but I am still worried and I KNOW the embarrassment will be a major thing! If I am understanding things correctly, we don't really have a choice in the matter once we get to that level. I think it will help if we can gripe to each other here.

 

[Diane H]

Most people with ALS don't lose bowel and bladder control. Urinary accidents are the result of of a really full bladder and just not being able to hold it any longer. Unfortunately many resort to limiting fluids to control frequency of needing to go. Bad for your body in so many ways! If you can time your intake an d really tank up when help will be available, that may work. Bowel control usually comes more naturally if you have a fairly consistent time of day for bowel movements. That definitely doesn't mean you have to go everyday, but your innards learn to wait till the right time. Having your daughter help is a huge embarassment at first, and her age will make it worse, but don't underestimate what the two of you can handle.

 

[Barbie]

JJR815--Your daughter can do what every has to be done. My own daughter was 15 when she had to clean up a blow out on my husband. not a thing she wanted to do but it had to be done. husband had diarrhea and could not get to the commode and she was home alone with him. it happens and the best thing to do is make a joke of it if it does so she doesn't freak out.

all my kids have helped with the urinal and regular BMs too. it is usually my job as wife and mom, but if he has to go he has to go. best to talk to her in advance or have her mom talk to her about it being a natural process, and natural to be uncomfortable about it as a daughter. what I said to my kids is "I know you don't want to do this but if it happens, please don't make a fuss about it and just act cool no matter how embarrassed or grossed out you feel, because dad doesn't want you to have to but it can't be helped sometimes!"

 

[mariam]

I totally understand how you must feel Bernie, however as a daughter of a dad with ALS, I would do anything for him, including taking him to the potty and helping him. He is not at that point yet that he needs assistance, however I feel for him that he will be embarrassed...I don't care at all. I love him so much, it is nothing to me when the time comes and as someone else posted, "we all pee and poop". Hang in there my friend, and enjoy your weekend with your girlfriends!

 

[affected]

So how was the weekend Bernie?

For my husband all of this has been hard, but the FEAR of what it will be like was the worst. It turned out to be a good thing I broke my toe and he learned to let others do so much more for him. Now it is all becoming just part of life for him and hasn't been as bad as he thought.

We sure all do pee and poop, and as others have said, a bit of a joke, a bit of dignity and dealing with it, to me IMHO, is a great way to tell ALS that you are 'living with'!