When is it time………

[Hayls]

Ok, I’m biting the bullet, my ability to stand is almost completely gone, I still have control but it’s getting exhausting going to the loo various times a day, I don’t know if pads are suitable but the thought of being sat in my chair letting it all out is going to be very difficult to do mentally, does anyone use a catheter, if so, how troublesome are they, do you think I’m giving up to easily? I don’t know what to do for the best

[Ellie]

There is no such thing as "giving up too easily", just do what's right for you

I go to the loo several times per day Hayls but I have carers, so, for me right now, it's very doable.

I know ladies with catheters and, if necessary, I'd go down that route no problem. Like you, I think I'd find it hard to let go in a pad and I'd worry about my skin integrity.

Mind you, catheters increase the risk of infection, whether a urinary one or an indwelling (suprapubic) catheter, but by following guidelines, the risk can be minimised.

You could talk to your nurse about what's involved and have a think about it - you could even try one.

Be kind to yourself Hayls!

Love Ellie.

[kd1]

Hi Hayls,

Not experience as such, but facing the same decision. I can weight-bear tolerably well, but am increasingly struggling to rise out of the wheelchair (and I already have all the lift a cushion can provide) . I've discussed this with my MND nurse, my OT, and the two carers I really trust. I've also had a phone consult with a urologist. I live alone. The consensus is that a suprapubic catheter is the way to go. I truly don't want to do this, but it is, for me, the least worst option. And as is so often the case with MND, it's not good to wait for the crisis to develop. So once the NHS starts moving again... There will be infections but scrupulous cleaning round the site, and stockpiling antibiotics should minimise the frequency and duration of these.
Wish I was as confident as I sound!
Kate

[Ellie]

Thanks Kate.

Will the procedure be done with local anaesthetic or a light general?

Love Ellie.

[Hayls]

Thank you Ellie and Kate,
Kate, thank you for sharing your own dilemma, hope the path you’ve chosen works well for you.
I’ll speak to my Nurse team and see what they suggest, the last thing I want to happen is to add more problems to the mixture but as you say Ellie, skin integrity is a huge concern as I use to be a carer and the sores that we had to treat I wouldn’t wish on my worst enemy, so glad you’ve got regular carers to help you regularly. Me and hubby aren’t in a routine so hydration can be anytime, maybe I need to get hubby in a routine, we both use to shift work so our working hours would be all sorts of times, we are still in old habits, doh
Take care girlies

[Deb]

Hi Haylis and Kate,

As Ellie said theres definitely no such thing as giving up too soon. I think us folks with MND are the opposite and tend to persevere with things until they are becoming unsafe.

It took a bad fall to make me realise that my transfers were not working. I can no longer weight bear at all but my arms are strong enough to transfer sideways to the toilet from my wheelchair and then onto my shower chair. It is a big effort and at one point I was not drinking enough water to avoid going. My physio suggested a she wee or a female urinal thingy to use later in the day or when I am tired . At first I thought it was gross but I have got used to it like everything else and its reassuring to know you can use it when you're out as well. Not a problem at the moment unfortunately ! You do need some arm strength to use it however.

It's such a problem but we shouldn't avoid staying well hydrated because of toilet worries!

Take Care and stay safe,
Love Debbie x

[kd1]

THe plan is to go for sedation if they decide I'm thin enough, and that will be decided on the day. I have an assessment sometime before then.

[Ellie]

if they decide I'm thin enough

Oh. My. Days.... How to make a girl feel good

I know what they mean - it's more straightforward to cut through thin fat layers.

Best of luck.

[Lynne K]

Hayls, Kate, Deb and Ellie, I too have been thinking what to do in a similar situation that is looming. I’ve always tried to be one step ahead of my needs, but this one is more difficult for me to work through. I’m really struggling using my walker and don’t know how long my dodgy hands and arms are going to work. There isn’t room in our wet-room to side transfer. My OT said that it will be her plan to have me move on to an over the loo type of wheeled seat (from my wheelchair) before coming into the wet-room. I think that I must not look too far ahead so that I can use all of my head space and energy to deal with one of the associated problems at a time or else I could become overwhelmed. Love to all, Lynne x

[Hayls]

Good morning Lynne,
Yikes, it’s not an easy decision, I’m already at the point I need to think about it, right arm completely gone, right leg barely moveable, only thing enabling me to stand is my left leg and left hand gripping the rail but my left hand grip is getting weaker very quickly, I’ll speak to my nurse and see what they suggest, my OT is organising a T40 shower chair that will be able to go over the loo but I’d like to be able to go out without fear of where the loo is, I know I’m grasping on to my old abilities but I want to keep what abilities I have for as long as possible if I can, I don’t want to give up just yet72B2193D-6A0C-4A50-8B4D-6A7F37182088.jpg

[Lynne K]

Thanks for your reply Hayls and good luck with your op’ happening quickly and safely, love Lynne x

[Catsparkle]

Hi Hayls,

Not experience as such, but facing the same decision. I can weight-bear tolerably well, but am increasingly struggling to rise out of the wheelchair (and I already have all the lift a cushion can provide) . I've discussed this with my MND nurse, my OT, and the two carers I really trust. I've also had a phone consult with a urologist. I live alone. The consensus is that a suprapubic catheter is the way to go. I truly don't want to do this, but it is, for me, the least worst option. And as is so often the case with MND, it's not good to wait for the crisis to develop. So once the NHS starts moving again... There will be infections but scrupulous cleaning round the site, and stockpiling antibiotics should minimise the frequency and duration of these.
Wish I was as confident as I sound!
Kate

I can weight bear but only walk A few steps and in the evening not even that.I have been loaned a mobile hoist by ot which we use for loo transfers using an over the loo chair and I'm waiting on a stand assist to get me out of my rec?liner . the whee?led over the loo chair has been invaluable . so even when I can't weight bear I can still use loo.

[Lynne K]

Sounds great. Take care, Lynne x

[Hayls]

Update
I had my catheter fitted on Thursday and I’m finding it very uncomfortable to sit or lean forward, is that to be expected?

[Ellie]

Oh Hayls, why are things never bloody easy for us??

I hope you get an answer from someone with first-hand experience but in the meantime, could it be your bladder spasming because it's complaining about the balloon or could the tubing not have enough slack to allow for free movement perhaps?

It's worth contacting your nurse in the morning if you're still uncomfortable. There's no blood in your urine, is there?

And well done on going for it.

Love Ellie.