We are getting near the incontinence stage

[Scottoppy]

My lovely wife is terrified of, but getting indications of, incontinence. So far one or two 'accidents' but an increased demand on me to get her to the toilet. The worst part is in the night, she has for some weeks now been unable to get to the commode unaided after several disastrous falls. She now uses her lifeline call to get me to help. On average I am aroused 3 or 4 times a night and it appears to be increasing. Has any one else got to the stage of being too tired to think after all night and all day toilet duty with any suggestions to help? Sorry for the diatribe but I am at the end of my tether, so tired I nearly cut my thumb off chopping onions!

[Heady]

Unfortunately most of us have. Sorry no real advise, except, make sure you are getting all the extra help you need. This is now a two man job. Nobody can survive without help. We all think we can, but it’s our loved ones that suffer big time, with that attitude.Please look after yourself, your wife needs you to.

Sending very big hug and much love

Lots of love

Anne

[Scottoppy in reply to Heady]

Thank you, Love John

[Caro2132]

Hi, Anne is right. Not being able to sleep because of interruptions is a sure sign that extra help is needed. If you are in the UK you could ask an incontinence nurse how to deal with the night time interruptions. I’m not sure about convenes for women but I expect someone else will chime in about that. Also make sure you have waterproofed the mattress with pads. My husband hated adult diapers but they definitely helped.

Good luck on your journey and take care of yourself so that you can take care of your wife.

Caroline

[Scottoppy in reply to Caro2132]

Thank you Love John

[Nodbod]

Hi ScottoppyI'm afraid I've been going through this with my dad although it's more urgency than incontinence with him. He can't always get to his alarm for various reasons. We've tried using incontinence pants and pads on his bed, which work really well for that practical side, and me and the carers deal with it in the morning. The issue has been than he sometimes takes the pants off when they're full, or he tries to get up and falls anyway. It's one of the reasons we've decided to move dad into a place with 24 hour care where he's not having the indignity of not being able to get to the loo, or trying to get the loo with the obvious results. If your wife is willing to use something like pads/pants then changing those is far preferable to visits to A&E or having you suffer through loss of sleep. It's not a nice solution but it might be worth considering perhaps in the short term, but I do feel that like us you're in need of additional care of some kind.

I truly believe we're not failing anyone by getting more help. It's the right thing to do, and we can still be there for our loved ones.

[Dickwin]

John,

My wife is going through the same thing, but we are now taking bathroom trips every 60 to 90 minutes, 24/7. Sleep deprivation has gotten so bad that, even though I worked from home, I just retired last week, at the age of 56. I am at the point that my wife needs me 24/7. It would be a tremendous help if she would use adult diapers, but she will have none of it and I am resolved not to second guess her on anything regarding this disease. I am thinking that her stubbornness and resolve are keeping her going, so I do what I can for her and I do more laundry than was necessary when we had 4 kids at home.

Hang in there and I will too.

Regards,

Dick

[youliftmeup]

I so empathise. I am 73 and get up 4/5 times a night to change my husband’s pads and as he is heavy even that is difficult. He also has a habit of shredding them too which makes life even more yucky! But we love them. Can only suggest you try to sleep when she does during the day as you will obviously feel you have daily jet lag! Hugs for the day.

[Nodbod in reply to youliftmeup]

Oh, the shredding... One time dad shredded his pants up then popped them in the washing basket, I never realised and put it through a wash, I spend the rest of the afternoon trying to sort that out! Your husband is so lucky you're there for him, you must be doing a fantastic job! Good on you!

[AnneandChris]

Hello there

I'm sorry to read your post John. Anne's advice is so important. Please talk to your District/Community nurses as they may well be able to help.

There are Conveens for men which are an external sheath catheter, and were invaluable and available through the NHS. I'm not aware of what is available for women, but would have thought that there must be something.

Please look after yourself too, keep on keeping on.

Love

Anne

[AJK2001]

Definitely get a referral to an incontinence nurse. Mum used pads day and night and absorbent Kylie sheets on the bed, plus waterproof mattress cover. We still took her to the toilet but the pads helped if we didn't make it in time. Mum was also prescribed a drug to reduce bladder sensitivity and I do believe this helped, so she didn't feel she needed the loo as often, so not so many trips had to be made. Another option is a catheter, it's not without risk of infection but can be handled in the community.

If you haven't already, please get carers in to help you both. You may need to try different carers before you find the right one, but when you have a good team of carers they are such a support. They will give you and your wife company, they should be cheery, helpful and know when something isn't quite right and medical help should be called. They will give you breathing space and some time to yourself, which is something we all need.

[Indiana-Girl]

My beloved husband has now entered this stage as well. He also sometimes does not know whether he has to have a bowel movement or whether he needs to empty his bladder. It is quite frustrating for me as it does not seem to bother him at all. Luckily for me, he uses a urinal at night so I no longer have to get up with him. He sometimes feels like he has to go and doesn’t and the reverse is also true. His urologist and neurologist both call it neurogenic bladder. He also sometimes does not empty his bladder completely. That can bring more serious problems. It has been recommended for him to have a permanent catheter put in by next January if things do not improve. At this point, I have just put him in diapers. It reduces the embarrassment and frustrations of this issue. Also, if company comes, because it takes so long to transfer him to the wheelchair to go to the bathroom, he can relax and enjoy the companionship. You are not alone. I know it is difficult, but try to enjoy the time you have with you sweet wife.

[Dosco]

Scottoppy, I sympathize with your plight. I too take care of my wife and aid her in toileting. Fortunately, in my instance, she sleeps through the night. But I have been awakened for other reasons and some nights manage 4 hours of poor quality sleep. However, during the day it is not unusual for her to demand she needs to use the toilet on average every 2 hours or so. Since she is wheelchair-bound and cannot stand or for that matter turn, toileting has become very challenging, and yes, I too am at the end of my rope. Fortunately, I was able to get some respite and a caregiver arrives to prepare lunch and so as of late, the burden is somewhat reduced. Next week, given her advanced stage she will be admitted to long-term care. I simply can no longer take care of her at home.

[Jcox]

After a number of accidents I presented it to my stubborn mom as “absorbent underwear” that she could wear just in case we were a little late getting her to the bathroom. I have never referred to them as diapers. Initially she agreed to wear them when we were going out, and then at night, and gradually they have become her regular underwear. With her pride the language and presentation were all important.

[Dickwin in reply to Jcox]

Jcox,

You said "I have never referred to them as diapers."

Good point. Well taken. Thanks!

Dick

[oilman1]

Currently going through the same thing with my wife. She is up every two hours at night to go to the bathroom and after two or three times I cannot fall asleep again. I now take a nap during the day when she is sleeping and that helps some. She is also having problems cleaning herself after doing a bowel movement and that is starting to become a big chore to clean up after her. I haven't gotten help yet but I think it is getting to that point. Good luck on this hard journey.

[mb2roger]

There are a few things you could inquire about to help you both get better sleep:

As my mom’s PSP progressed and she could no longer use the commode independently, she stopped consuming any liquids after dinner and trialed a bladder medication to reduce her incontinence, while wearing comfortable pull ups as a back up. These supports were helpful for a short time, and then my mom agreed to trial an in-dwelling catheter so she could sleep better through the night, with no limit to hydration after dinner which was beneficial. My mom continued with in-dwelling catheters for her remaining years. There are pros and cons with any treatment or strategy, and an in-dwelling silicone catheter was what afforded my mom a better rest. An in-dwelling catheter does require regular replacements (my mom’s Homecare nurse, in Canada, changed her catheter monthly) and careful hygiene practices to avoid/minimize infections. My mom’s GP sent a standing urinalysis order to a neighborhood lab so we could check for infection whenever we suspected this (symptoms can be atypical, like confusion and excessive fatigue versus pain and fever). I hope some of this information will be helpful to you. Please use all medical and Homecare supports available to lighten your load so you can take good care of yourselves.

[Scottoppy in reply to mb2roger]

Thanks for that, I will have to translate the advice into what is possible in the UK Cheers

[Bojszi]

What helped my husband most was a condom catheter. As long as it is cleaned properly, there should be no problems with infection. They do have them for women. What it allows the caretaker is sleep all night as the urine is collected in a bag which is then emptied in the morning. My husband had his diapers changed every 4 hours, by which time he was sopping wet as was the bed pad. Once he had the condom catheter, he was comfortable as well as the caretaker. Please look into it for your wife. It will make your life much easier.

Reusable Portable Female Comfort Fit Advantage Urinal System with Spill Proof Collection Bag

Brand: Advantage Urinal Systems

ALL INCLUSIVE, Easy and Ready to use. Always empty and ready for next use with patented design

Urine rapidly drains from urinal into a 2-liter collection bag with one-way valve

Reduces falls, caregiver workload, odor and briefs.

Wonderful for continent people with mobility disorders, urinary frequency, post operations, have difficulty ambulating to bathroom, Etc. Also great for traveling and camping.

The COMFORT FIT FEMALE model with its Unique padded rim creates a better seal and increased comfort. This System is portable, Re-useable, easy to clean. The Advantage Systems save time and money while promoting dignity and independence.

youtube.com/watch?v=-EaSDAc...(Not working as expected?) is just one of the catheters out there.