First Question for ALS Caregivers?

[AmyLynn]

My husband was diagnosed in June of 2012. He exhibited his first symptom, drop foot, in Oct of 2011. He is wheelchair bound but has the use of his left hand. He has strength left in his arms and uses those to help whenever he can. His speech and swallowing functions are deteriorating. We both quit our jobs in Aug 2012. We have amazing support from family and friends and all of the medical people we've been fortunate to meet.

Danny is coping well, and has a great attitude He says he doesn't want to cry, and doesn't want anyone else to either, because he doesn't have time to be sad. He is an amazing and gentle man, and we have been together 40 years. He has a bucket list and we have been busy trying to accomplish those things. He wanted to fly a plane and with help from his two brothers and a cousin, he was able to do that. Getting him over the wing and actually sitting in the airplane seat was pretty funny. He also wanted to go tubing down the Niobrara River, here in Nebraska, one more time. We were able to do that with the whole family. I just collapsed the manual wheelchair and tied it down with bungee cords to it's own tube. My son and Son-In-Law carried him in and out of the tube when he had to be moved. I did hear comments like "Don't make me laugh when we're carrying Dad.", as that was happening though. He wants to go to Florida and sit on the beach and we plan to drive there next week.

I have frequently browsed this site and found all the forums extremely helpful. This forum has helped me to find Danny an ALS Clinic with specialists and that has worked out well. It has also helped me identify the feeling I've been having and has consoled me in that I am not alone. I want to thank you for that.

I haven't been able to find any information on this forum about this so here is my question. What do we do when he has to use a public restroom? He has trouble standing, but can pull himself up using an assist bar. I can't go in the men's restroom with him to help him unbutton his pants and unzipping and all of that. I know he can use a urinal bottle but that isn't working in that the angle is wrong. Any help or suggestions would be really appreciated.

I really hoped my first posting would be about something a little more lofty but every day problems are what I'm dealing with as you all are. I hope this subject isn't offending anyone and that someone else is trying to figure this out and has had some luck.

Thank you,

 

[marypat]

actually amylinn my husband does go into the ladies with me if there isnt a family restroom.and i have showered in the men's shower house. if a urinal isn't working you can try a condom cath (some call them texas caths) that fit like a condom and have a tube that ends in a small collection bag. he can wear it all day under his clothes.
it sounds like you guys have a great attitude and support system. We all would like to wax poetic but the truth is unless we have the money of steve jobs it all comes down to the nitty gritty. thats y we r here and we r all in this together.

 

[AmyLynn]

Thank you mary pat. That is a great idea and I will investigate. It sounds like just the suggestion I was looking for. I thought I knew what nitty gritty was, and not the Band, before, but I didn't. Thanks again.

 

[ottawa girl]

You and your husband are great examples of living today, for today!

Have a fun time in Florida. ... Will Danny be going deep sea fishing?

 

[AmyLynn]

I hope so : ) Deep Sea Fishing would be fun. I think it would be better if he caught one than me. Anything big on the end of the hook and I'd just be yelling, get it off! He wants to rent a sand wheelchair to get down to the water. I have looked at that and we can do it. Gotta figure out how to get him in and out of the water too.

 

[marypat]

if you want a beach wheelchair call now and reserve it cause we couldnt get one when we went to the ocean. they said we should have called ahead

 

[AmyLynn]

Uh oh, didn't know that....I will do that now. Anything else I should know? We have made reservations at handicapped accessible hotels for the drive. We didn't want to fly, Danny wanted to see some country. I am hoping he can ride seven hours a day...

 

[marypat]

we took several different neck pillows and my hubby would switch them out for me so i could be comfortable. because of the spasms one wasn't always comfortable. also if he still stands stop every few hours to stand and stretch pals are high risk for clots, not to mention stiffness. we also keep a gait belt when we go anywhere so if i get too tired he has a way to hold on to me. enjoy your trip both of you!

 

[momap53]

Keep in mind that not all handicap accessible rooms are equal. It would be a good idea to get the specifics at each place you plan to stay.

So glad you're getting the opportunity to do this. Have fun!

 

[vzandt]

Amylynn....I love your post. So positive and loving.

 

[Syekick]

I am wheelchair bound. When out and about I use a urinal inside the wheelchair van. I cover myself with a throw. At the movies, my wife carries along the urinal in a bag hanging from my chair. I just go into the mens room, use it and then pour it out. If I just have to have a bowel movement while out of the house, we go into either restroom. I transfer using a toilet transfer board which has a large C on the end that sits over the toilet seat.

 

[lgelb]

Not sure for what urinal "the angle is wrong" but we have good success w/ a Uribag and it is very compact for travel. We keep one at home and one with the wheelchair. We have not solved the BM problem in public restrooms (love to hear any thoughts) since my husband requires a Hoyer to transfer.

 

[AmyLynn]

Wow, you all had some good advice. I went searching for the Texas condom today and the pharmacist i asked was young and didn't know what it was. I'm sure he was thinking "Everything is bigger in Texas! Must be a special order item.". He did offer some advice on where to get one in town as soon as he stopped smiling : ) I was able to find one somewhere else, and that pharmacist said I needed a script for one. He did agree to sell me one after I explained what it was for.

After shopping all day, I'm sure we have everything we need including the neck pillows, transfer board, and chocolate

It's amazing how you all are so supportive and helpful. Wish I could take you with us! I appreciate the friendship and will try to update you on our trip. Thank you so much!

 

[KissJ]

I got right into the men's room after knocking to see if anyone is in there...if so I wait and ask others behind us to wait. If no one it there I go right in and when guys come in I excuse myself and say I Have to be with my husband! We went on two cruises this past summer. On the way to the ship driving our handicapped van, we stopped a couple of times I went through my routine with the Men's Restrooms, and sometimes I got lucky and there was a Handicapped Family room and I could go in with him no problem!

On the cruise ship I did the same thing going right in with him! When we were off the ship and out and about I did the same..."Excuse Me...Here I Come... or maybe I should say, "Ready or not here I come!"


We have taken a urinal along with us in the van for long trips or if we end up stuck in traffic.

My husband has just started using the condom cath for night time. It pulls on his hair and well, is uncomfortable. Right now I am up anywhere between one and five times a night to help him. He has urgency to use the restroom so we have had our share of accidents and issues!

God Bless!

 

[AmyLynn]

Thank you for sharing your experiences KissJ. So far we haven't had any issues. We are going into the women's restroom together and it is working out. Some really nice people have offered to guard the door. You are right, the condom cath is uncomfortable and the hair pulling is definitely a hazard. We are using the urinal when he has to and as long as he's wearing really loose pants and boxers, he is managing. We are more than half way to Orlando so...Yea! I was able to rent a beach wheel chair, thanks to marypat's advice, we reserved it ahead of time. Thanks again, it's really great knowing that other people are going through the same thing.