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Living with Dementia and a Stoma

Maybal

New member
Feb 13, 2022
2
0
My Mum has vascular Dementia, diagnosed 3 years ago, she had bladder cancer 8 years ago, and has a Stoma, she lives on her own, with carers gojng in. It's becoming so much more difficult with her Stoma, she's not able to change it any more, she doesn't understand why she needs her drainage bag at night, the bag is attached in the evening by carers, as soon as their gone, she detaches it, it fills up during the night, she's up during the night emptying it, so doesn't get a good nights sleep, but when she does have a good sleep the bag obviously leaks, bed and everything wet, she is distressed, carers or I come in the morning and sort everything out, have tryed taping the connections up, she can disconnect them, I've been in contact with her Stoma Nurse and Stoma suppliers, there is nothing out there like a child's lock, any idea's please, thank you
 

Gilly-Bean

Registered User
Oct 27, 2021
34
0
Littleborough
Hi, I'm so sorry you're having these issues with your Mum. My friends Mum has a stoma and Alzheimer's, she is prescribed sleep medication to help her sleep and it stops her messing with her bag as she used to keep taking it off at night. Hers isn't a urostomy so she doesn't have the night bag issue but it may be worth a try.
 

nellbelles

Volunteer Host
Nov 6, 2008
9,641
0
leicester
Hello @Maybal welcome to DTP I personally don’t have any experiences of stoma’s but I’m sure you will find support on the forum.
I hope now you have found the forum you will continue to post for support and to share your experiences.
 

Frank24

Registered User
Feb 13, 2018
351
0
Hi there I have experience of this with my Mum... managing a stoma with Alzheimers on top seems like a very raw deal to me and I am sorry your Mum is having problems. My mum couldn't really understand this huge change to her body as she kept forgetting it was there. Sometimes she was aware of it, and sometimes not and she could get very distressed by it. It was a hard time. She managed OK until she didn't and like your describing - would unattach it at night and hide it in her chest of drawers and sometimes just leave it on the side. All quite horrific from my previously house proud Mum. I can't even imagine the distress and confusion she has had to endure. I had to get a full time live in carer - and we still had issues with this happening from time to time - which was a flash point with the live in carer... in turn I got incredibly stressed out and upset.
Im sorry to say that if she continues to struggle with this it is likely she will need 24 hour care either at home or in a care home where it can be managed correctly. I remember reading on here of someone who uses a tight fitting t shirt or body suit to discourage their relative disturbing it but not sure how effective this will be.
 

Maybal

New member
Feb 13, 2022
2
0
Thank you so much for your reply, it's heart warming to know that I'm not the only one that has or as had experience with this issue, thank you
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
My Mum has vascular Dementia, diagnosed 3 years ago, she had bladder cancer 8 years ago, and has a Stoma, she lives on her own, with carers gojng in. It's becoming so much more difficult with her Stoma, she's not able to change it any more, she doesn't understand why she needs her drainage bag at night, the bag is attached in the evening by carers, as soon as their gone, she detaches it, it fills up during the night, she's up during the night emptying it, so doesn't get a good nights sleep, but when she does have a good sleep the bag obviously leaks, bed and everything wet, she is distressed, carers or I come in the morning and sort everything out, have tryed taping the connections up, she can disconnect them, I've been in contact with her Stoma Nurse and Stoma suppliers, there is nothing out there like a child's lock, any idea's please, thank you
Oh my gosh. Your poor mum. And you certainly have your hands full. I don’t mean to sound ignorant, and I know what a Stoma is, but I thought it was for colostomy. Does she use it for bladder?
 

Gilly-Bean

Registered User
Oct 27, 2021
34
0
Littleborough
Oh my gosh. Your poor mum. And you certainly have your hands full. I don’t mean to sound ignorant, and I know what a Stoma is, but I thought it was for colostomy. Does she use it for bladder?
A stoma a a hole made in the body to allow output. So a colostomy is for bowel output a urostomy is for bladder output. X