Managing with wheelchair

[TeddyBunny]

Hello everyone,

Like everyone, I first searched on google to find a forum or a topic to find an answer. Like everyone of you, I discovered this forum and tried to find the answer I was looking for. But I'm think it could help some of us in wheelchair to manage our lifestyle, by sharing habits and tips. My question is simple : How do you manage your life with your IC while being in wheelchair ?

In my experience, I usually change laying down on my bed (obviously not standing up on a wall - it's fine, you can laugh with me), wearing the ticker diaper I have (Tena Ultima - what's yours ?) with a booster pad (also Tena - you?). The point is I can't find a way to change outside, for two reasons :

• It's not a problem for me to bring a diaper bag but in wheelchair you can't access to every toilet or large private place to calmly change, what about you ?
• How do you change while sitting ?

I tried and hardly succeed to put on a diaper, but cleanly remove the dirty one, cleaning and keeping the sit also clean is hard enough to say impossible. This is why I use booster pad with thick diaper to not have to change outside.
But... This Winter for Christmas I spend the day in family for diner but the floor 0 there is only one room : the kitchen, a big one with dinner table, television... you can imagine it. But in the middle of the day, as you can imagine, I needed to change, so I pretended I had something important to do at home (it was clearly) to go home, change, and come back to the dinner.

You might think "you can't go on like this", and you are right. This is why I am looking for solution, with you.

Thank you for reading,

Teddy

 

[SparkyDog]

Welcome to the site.
I am not in a wheelchair
but am full time IC
use Abena L4
So if I understand correctly you're looking for tips how to change while in your wheelchair?
I assume your family doesn't know you need diapers? As If they knew I would have just asked for access to a bedroom for 20 minutes to change.

Changing while sitting is quite tricky as I am sure you have discovered and doing it laying down is way easier.
Basically with the way things work changing while seated is tricky because your body weight is in the way for making easy adjustments.
I don't know what your level of mobility is
What I do with people with limited movement is roll / lean from one side to the other. once it's firmly under your butt you have more room to make front adjustments.
Hopefully work (if you work) allows for extra time to change.
A booster pad helps with an extra wetting and allows you to go longer between changes but longer skin is wet quicker it breaks down and you're in pain.
I use Tranquility booster at night
Do you use a soaker pad or puppy pad on your wheelchair seat to catch leaks?
Hopefully others with more personal experience can also weigh in

 

[Edgewater]

I am U-IC and in comparison, I have an easy life.

You're 100% correct that there is limited information regarding the demands of wheelchair selfceare. Showing my total ignorance regarding your needs, as part of physical therapy, do they not provide information /instructions regarding support equipment and methods. etc??

Your choice to return to the comfort of your home and its support was a great idea and clearly shows you fortitude and inter-strength. Your returning is an inspirational to any one that is question getting out and about!

Regarding diaper choice, you have come to the right place as we all have an opinion as to what works best for each of us!

For my needs, which is 24/7, Urine-IC, I really like Northshore products and use their MEGAMAX diaper for its capacity, their boosters for the same reason and their trifecta diaper covers. They also have oversizes wipes that are great for clean-up. You never have to guess as their Customer Service staff is very helpful.

The information in the above thread is clearly more intone with your needs and I am certain that other members will be along shortly!

Bless your courage and strength in getting out and about!

 

[CheshireCat]

When he sees this post, I think @ParaRomeo might be able to offer you some good tips on changing when out and about in your wheelchair.

 

[TeddyBunny]

Welcome to the site.

So if I understand correctly you're looking for tips how to change while in your wheelchair?
I assume your family doesn't know you need diapers? As If they knew I would have just asked for access to a bedroom for 20 minutes to change.

Changing while sitting is quite tricky as I am sure you have discovered and doing it laying down is way easier.
Basically with the way things work changing while seated is tricky because your body weight is in the way for making easy adjustments.
I don't know what your level of mobility is
What I do with people with limited movement is roll / lean from one side to the other. once it's firmly under your butt you have more room to make front adjustments.
Hopefully work (if you work) allows for extra time to change.
A booster pad helps with an extra wetting and allows you to go longer between changes but longer skin is wet quicker it breaks down and you're in pain.
Do you use a soaker pad or puppy pad on your wheelchair seat to catch leaks?

Hello thank you for you answer,

As I said the bedroom, toilet and bathroom are upstairs so I can’t reach them.
Rolling is a good point only for wet diaper, for a simple reason.

Booster pas as you said, and yea I use it outside, became so much important, I don’t use puppy pad but soaker pad I do.

I am working but fortunately I can work from home, even if I some day need to move, I that’s the point of my question.

All of my family don’t know about my issues, I don’t think they need to know, did you told your family?

Teddy

 

[TeddyBunny]

When he sees this post, I think @ParaRomeo might be able to offer you some good tips on changing when out and about in your wheelchair.

Thank you so much !

 

[SparkyDog]

@TeddyBunny
Telling family is a very personal decision
My mom knew
A couple close friends know
It might help with more acceptance when with them. I don't know your family so be something you have to decide on.
Do you see a urologist?

 

[TeddyBunny]

Telling family is a very personal decision
My mom knew
It might help with more acceptance when with them. I don't know your family so be something you have to decide on.
Do you see a urologist?

Hello,

My parents know, mostly my mom too and maybe my younger sister.
The rest of my family is not really mind-opened so for the moment it's better if I keep it secret.

About urologist I know I'd better see one but due to a lot of disability I'm quit pissed seeing doctor. Right now I mostly handle everything right.
I also searched on google what he could say and I don't want to take medicine, and if he tells me to prepare myself to wear diaper : well I'm already prepared.

I had a surgery of my back, where I couldn't move for a few weeks and nurses brought me diaper and advise me to buy some for home. At this moment I knew something new was happening in my life.

Do you still think it would be a good decision to see a urologist ?

Teddy

 

[SparkyDog]

yes I think it's a good idea to see a urologist
strongly recommended

 

[Edgewater]

yes I think it's a good idea to see a urologist
strongly recommended

Having a strong and trusted medical support team is very important as such a support team can provide choices you many not see as options.

 

[mickdl]

Hi Teddy,

I'm lucky that I'm not in a wheelchair but I know some people who does. I think it hardly depends on your capabilities to stand without help if changing will work or not. The most people that I know are using (condom) catheters and try it with bowel management and irrigation if they have also stool incontinence. Changing in a wheelchair without help or the corresponding tools is pretty complicated or even impossible. How ever - it’s also a bad idea to sit to long in the wet because skin irritations may occur fast. This is also the reason why many of those I know opted for a catheter.

 

[Bigbabybret]

So, I am IC and cannot walk much/far at all, any shopping of any length will require a wheelchair.

That said, going out and needing to change is needed, I of course look for Family restrooms as much as possible, and i usually have a PCA with me, but as much as i can take care of things like changing myself, now from time to time it's not possible to A find a family restroom, and B do everything myself.

I have 2 options that I have used many times.

1- Going back to my van to change
2- Going to another location where I know there is a family restroom.

That aside, going home is an option as well, and so far havent had to do that.

I have a large changing mat, and backpack with all the essentials in it with all the time. From my BP machine, to EKG, all my medications, emergency BP up pills, epi, wipes, and even things like bandaids anf stuff.

Now, depending on your IC and what your wearing, you may be able to goto another building/shop/location close by to change which may make the trip easier than going home.

I know that most larger retail places here in the USA have aa family restroom, and being in a wheelchair any clerk/associate/worker (pick your term( will show you where it's at even if it's an employee only place which i have had happen a couple times (employee changing room).

Dont be afraid to ask for a location to change, it's near impossible to change properly whilst in a wheelchair, especially if it's your own chair and is the proper width. Me i have issues with my hands as it is, and a few times have needed help even at home in my own bed.

Do ask for a location, and dont be afraid to just say what is needed. Asking a person "Do you have a family restroom, or a larger place so i may change and clean up?"

Hope maybe give you an idea that may help.

 

[sport1]

Hello everyone,

Like everyone, I first searched on google to find a forum or a topic to find an answer. Like everyone of you, I discovered this forum and tried to find the answer I was looking for. But I'm think it could help some of us in wheelchair to manage our lifestyle, by sharing habits and tips. My question is simple : How do you manage your life with your IC while being in wheelchair ?

In my experience, I usually change laying down on my bed (obviously not standing up on a wall - it's fine, you can laugh with me), wearing the ticker diaper I have (Tena Ultima - what's yours ?) with a booster pad (also Tena - you?). The point is I can't find a way to change outside, for two reasons :

• It's not a problem for me to bring a diaper bag but in wheelchair you can't access to every toilet or large private place to calmly change, what about you ?
• How do you change while sitting ?

I tried and hardly succeed to put on a diaper, but cleanly remove the dirty one, cleaning and keeping the sit also clean is hard enough to say impossible. This is why I use booster pad with thick diaper to not have to change outside.
But... This Winter for Christmas I spend the day in family for diner but the floor 0 there is only one room : the kitchen, a big one with dinner table, television... you can imagine it. But in the middle of the day, as you can imagine, I needed to change, so I pretended I had something important to do at home (it was clearly) to go home, change, and come back to the dinner.

You might think "you can't go on like this", and you are right. This is why I am looking for solution, with you.

Thank you for reading,

Teddy

Great post lucky I can change myself being only autistic +dd.

 

[LordDuque]

Ye

Hello everyone,

Like everyone, I first searched on google to find a forum or a topic to find an answer. Like everyone of you, I discovered this forum and tried to find the answer I was looking for. But I'm think it could help some of us in wheelchair to manage our lifestyle, by sharing habits and tips. My question is simple : How do you manage your life with your IC while being in wheelchair ?

In my experience, I usually change laying down on my bed (obviously not standing up on a wall - it's fine, you can laugh with me), wearing the ticker diaper I have (Tena Ultima - what's yours ?) with a booster pad (also Tena - you?). The point is I can't find a way to change outside, for two reasons :

• It's not a problem for me to bring a diaper bag but in wheelchair you can't access to every toilet or large private place to calmly change, what about you ?
• How do you change while sitting ?

I tried and hardly succeed to put on a diaper, but cleanly remove the dirty one, cleaning and keeping the sit also clean is hard enough to say impossible. This is why I use booster pad with thick diaper to not have to change outside.
But... This Winter for Christmas I spend the day in family for diner but the floor 0 there is only one room : the kitchen, a big one with dinner table, television... you can imagine it. But in the middle of the day, as you can imagine, I needed to change, so I pretended I had something important to do at home (it was clearly) to go home, change, and come back to the dinner.

You might think "you can't go on like this", and you are right. This is why I am looking for solution, with you.

Thank you for reading,

Teddy

yes teddy bunny this post made me remember the first weeks after the accident when I needed the wheelchair and yes dudes it’s f..king complicated to change and clean alone, and that having space enough. If not it’s almost impossible. I hope you get to do it by yourself. And I encourage you to speak an urologist too. Cheers!

 

[TeddyBunny]

That aside, going home is an option as well, and so far havent had to do that.

Now, depending on your IC and what your wearing, you may be able to goto another building/shop/location close by to change which may make the trip easier than going home.

I know that most larger retail places here in the USA have aa family restroom, and being in a wheelchair any clerk/associate/worker (pick your term( will show you where it's at even if it's an employee only place which i have had happen a couple times (employee changing room).

Dont be afraid to ask for a location to change, it's near impossible to change properly whilst in a wheelchair, especially if it's your own chair and is the proper width. Me i have issues with my hands as it is, and a few times have needed help even at home in my own bed.

Do ask for a location, and dont be afraid to just say what is needed. Asking a person "Do you have a family restroom, or a larger place so i may change and clean up?"

Hope maybe give you an idea that may help.

Hello Bigbabybret,

Thank you so much for you reply. This is incredibly huge.

Usually I don't need to go home. That was because the closest room to change was upstairs, so that was obviously impossible for me, so I decided to go home and come back. Also when going home for shopping, appointment or something, just a diaper with a booster pad is good enough.

Find a closed location or room to change seems to be a really good idea. Would you help me by telling me how do you do it ? I mean the way you remove, clean and put a fresh one. I don't want any crazy information just as you said it incredibly hard to change in wheelchair.
Or maybe you could change standing up. Tell me.

With training I'll figure out how to do it and apply everything you said and asking a room to change. My worst thought is having a big need, you see what I mean, because in this case we (every IC people would understand) need to change quickly, at least for the odor, and so I don't know how to do outside.

I thought I understood that you sometime need help. Who helps you ?

Thank you again.

Teddy

 

[TeddyBunny]

yes teddy bunny this post made me remember the first weeks after the accident when I needed the wheelchair and yes dudes it’s f..king complicated to change and clean alone, and that having space enough. If not it’s almost impossible. I hope you get to do it by yourself. And I encourage you to speak an urologist too. Cheers!

Hello,

Your "case" sounds interesting, would you to me more ?
Like what happen to you to justify wheelchair ? How did you change ?

Thank you in advance.

Teddy

 

[MaxSyd]

Hey teddy,

I'm a wheelchair user due to a spinal injury and a Neurological condition.

Sounds like it was a pretty hard situation to not have the privacy or room to change.

What is your mobility like? Are you able to transfer to the floor and back up?
- if yes I would suggest a change matt to transfer down to and then do the change laying down.

If you can't transfer to the floor, how is your transferring to a chair or toilet?
- I change seated sometimes and the best way I find to change seated is to have an extra seat/toilet/bench.
If it's a seat or a bench put a towel or pad/matt down so that it's a bit cleaner!
- untape your diaper and start to roll the front down as far under your legs as possible. Then transfer over to the other seat.... hopefully in the process the used diaper is left behind.
- once on the seat you can do your wipes and other cleaning.
- setup the new diaper+boosters on the wheelchair. Tuck the front of the diaper under the coushin so that it doesn't move when you transfer back. Once seated on the fresh diaper if you can sit closer to the front with your legs on the floor not the foot rest/plate and lay back a bit so that you are able to get a closer fit. Google paraplegic dressing techniques. There are a few good demos on how to dress in a wheelchair.
I then untuck the diaper from the front of the chair and tape up the diaper the best I can.

Here in Australia there are more and more changing places popping up which is amazing and makes getting changed so much easier.

at friends and family I normally ask if I can use a bedroom or a spare room. I don't specifically say I'm going to change my diaper but I guess they can figure that out on their own.

Depending on your car getting changed in the car could be an option if it's a wagon, SUV or van.

I'm sure @ParaRomeo will have some other good options and ideas!

Also sorry for the formatting I'm on my mobile

 

[Bigbabybret]

Hello Bigbabybret,

Thank you so much for you reply. This is incredibly huge.

Usually I don't need to go home. That was because the closest room to change was upstairs, so that was obviously impossible for me, so I decided to go home and come back. Also when going home for shopping, appointment or something, just a diaper with a booster pad is good enough.

Find a closed location or room to change seems to be a really good idea. Would you help me by telling me how do you do it ? I mean the way you remove, clean and put a fresh one. I don't want any crazy information just as you said it incredibly hard to change in wheelchair.
Or maybe you could change standing up. Tell me.

With training I'll figure out how to do it and apply everything you said and asking a room to change. My worst thought is having a big need, you see what I mean, because in this case we (every IC people would understand) need to change quickly, at least for the odor, and so I don't know how to do outside.

I thought I understood that you sometime need help. Who helps you ?

Thank you again.

Teddy

So, I've got one foot that doesnt work well, and many bad discs and vertebra from degenerative spine and pounding out a windshield with my head, despite that I can walk short distances, like depending on the day can be 200+ feet.

With that out of the way, I cannot change in a wheelchair, and i have to be in a reclined wheelchair, really prefer my convaid with a seat insert, an NO way can change in that.

When out yes I'm most the time just fine with diaper and no need to change till back home, but there is time to time where it's needed, either from being too wet or worse.

When i'm out and about, and either getting rumbling stomach, or wet, I will:
1- Know where there is family restrooms.
2- Mosey by the van
3- Just fine an Adult (not a 16yo no offence) working there and ask about a facility that can be used.

Ex.
Was out for dinner with my now ex, knew there was no family restroom there...That said, i asked the hostess if there is a place I can use nearby to change and clean up. They informed me of a family restroom in the adjacent shopping center, and how to get there without going outside in the weather (was winter)

That said, local by me there is a family restroom in just about everywhere, from wal-mart to shopping centers and alike. The couple places where there were not, they did have a room for employees to change (get dirt/grime/etc on outfit), and i've been able to use that.

Generally speaking the employee bathroom/changing room at smaller places are "Employees only" to keep it clean and not get destroyed and needing to lock up the toilet paper. An old man in a wheelchair isnt going to be creating any issues like that.

Anyhow, Bottom line.
Be honest what you need any why, respectful and you will usually find a place that will work just fine.

Afterall, whatever place you are at, if there is NO place you can change then you most likely will not be back there, and that isnt good for either side of the equation.

Most managers especially will know this, and know that if you will go elsewhere, so will any PCA's and/or other people you talk to over time. Bad impressions or limitations on the general retail public travels fast.

Not a lawyer either, but I think after a certain date there need to be facilities for people in wheelchairs, and with staff, etc. Most of which are as a general rule hidden from sight.

Like a walmart local to me, there are family/accessable restrooms, but no sign, and you need to literally walk through doors to get to them, and without asking wouldnt know they are there.

The UK keep a lot of them locked with a handicap key (radar key IIRC), but they seem to be less and less of them around, but more in buildings as required when redoing them, remember a lot of the buildings in the UK are older than the wheel (ok, wheelchair for sure).

If you have specific ?'s PM me.

P.s. forgot, I have paid staff for the most part, try to do as much as possible myself, but sometimes it's needed, also helps out when I pass out and/or dying, help is welcome.