Mum has colostomy and dementia anyone else know how to deal with this?

When I worked in a nursing home, we put a plastic bag over the colostomy bag so that in case of breakage, there wouldn't be an accident. At this stage of the dementia if she's unaware of the smell, that's part of the disease process. There's not much you can do to make her be responsible to that expectation. However, if she is compliant at home, then I would limit her outside excursions to only an hour or two. Her resistance is not to you but to the environment because she's not in a familar place to get clean. You can also stick a "downy sheet" to the outside of her underwear and this might deter the smell in public. Just a thought.

Thanks SRPLUS good advice ill try anything. So sad as she was always so very discreet about this before the illness im just waiting for district nurse to call since diagnosis and its taking along time to get her. Thankgod for this site.

One of the first parts of the brain that’s affected by Alzeimer’s disease is the area that's responsible for your sense of smell. Perhaps she really does not smell the odor, or maybe doesn't identify it as offensive. Might help understand why she won't go clean up, if she really doesn't realize that she smells bad

If you could get her to realize that she can't trust her own sense of smell, would she be more cooperative? Does she have enough cognitive ability to learn this, if you show her with a smell test, that her sense of smell isn't working? It's not likely in an dementia patient, but might be worth a try. Here's a list of things that you might test her with. (Copied from the Dr. Oz page). A normal sense of smell should be able to recognize these items, without looking.

Rose Cherry Smoke Peppermint Leather Lilac Pineapple Soap Strawberry Natural Gas Lemon Clove

Another thought, are the public places she's going optional. I mean, like shopping or visiting. Is she still cooperative enough that you can make a deal with her? Like... "Mom, I will only take you to the mall with me, if you agree to clean up your colostomy when say it needs to be done. "

That kind of "deal" used to work with getting my dad to wear his hearing aids, but as his dementia has increased, it doesn't work anymore.

(BTW, I'm a nurse and have take care of hundreds of colostomy patients, and I know that the smell can be far worse than the smell of simple stool incontinence. I wish you luck.)

Thanks gayle even on a site its embarrassing to ask but im sure its not nice for anyone to have. I understand a bit better now that maybe she dosnt smell it like we do.
Yes as regard your dads hearing aids same here she only got them two days ago and now " I DONT WANT TO WASTE THE BATTERIES" ?? im so drained and feel like im constantly at her for something and dont want to NAG all the time but sometimes you have to make things better for everyone around!

Do you have to take your mom in public? I mean does she have to go with you or you can't go to the grocery? My thought is if you don't have to take her then don't. That way neither one of you will have to go through the dilemma. If you want her to get fresh air and a change of scenery, you could still take her to the park or places like that where the smell can drift off and you wouldn't be as apt to be close to others. You know, you don't have to be embarrassed so much. Everybody poops and I know that you care more about your mom than any strangers that might act impolitely. I think about it like this: if I had a deformity or some kind of rare handicap, I know that my mom would have still taken me around other people and always have taken my side against others who might have wanted to hurt me. I just try to treat my mom the way that I know she would treat me if I were the one going through what she is going through. I hope I don't sound critical of you, I feel just the opposite. My counselor told me not to torture myself about things when 1. I didn't cause the issue, 2. I can't control the issue, and 3. I'm doing the best that I can. Your mom is so lucky to have you to take care of her! She's dealing with a double whammy and you are a saint to be doing all that you do!

Yes I agree with you geedeeooo. My mum would give her last breath for us! Its not a problem when shopping locally its in public transport lucky we dont go that often!
Its not nice for anyone but when I see the look on peoples faces when they are near her in shops and the smell is so bad and she just dosnt realise and then they think shes just a smelly old lady shes not its like you want to tell everyone that shes not well.
I just wondered if someone had some fantastic idea id never heard of worth a try! Ill just stick with my bottle of perfume handy.
And youre are so right I shouldnt be embarrassed my mum wouldnt be if it was me.
I will try and be more patient with her and maybe suggest i go to the toilet with her and yes blackmail she needs to understand that when i tell her she needs to change then she does it and dosnt get angry about it. Shes early stages but I think the anger is her dignity as she was always so clean and disgreet.

Your comment about her anger being her dignity rings true for me. I can hardly even imagine what our mom's are going through. And it's unbelievable for you, dementia, ostomy bag, and her anger to deal with! I'm sure all the other issues of life on top of that make you feel as overwhelmed as I do. My mom is completely helpless now but she had a partial mastectomy when she could still walk and she got up the day after and went to the bathroom and cut the tubes that they had left in her for drainage after the surgery. The tubes were meant to be temporary and everything worked out okay for my mom. I can't imagine how hard it must be for you to deal with something as delicate and infection prone as your mom's ostomy bag when she is fighting you over it. You are an incredible daughter to do so much for your mom. I know she appreciates it and even though she might not be able to say it anymore, she knows that you are now giving her life just like she once gave you life. You both have my respect and admiration. Your mom raised a really great daughter/woman!

I'm looking for answers to the same problem. My wife has had a colostomy for 30 odd years now and it's never been a problem. Now as her Alzheimers gets worse, her ability to manage it is waning fast.. It came to a head yesterday when we had lunch in a restaurant.. She made an awful mess in the toilet there.. You can imagine the scene with diners banging on the door, needing to go.. Eventually got in and cleaned her and the toilet. As for solutions to the problem, I don't think there are any.. I will from now on, have to accompany her to the toilet.. The temptation is to not bother going out, but that signals an end to an important part of life, not only for her but myself and family/friends..

I need advice. My mother has a colostomy bag and dementia. My
problem is she is beginning to pick off and lift the wafer consistently.
She is in an assisted living facility, and she is demanding more and
more attention. She doesn't realize she is doing it. They don't know
what to do to stop the behavior either. Any ideas?

You may be able put a soft wrap around the abdomen, like a loose abdominal binder or the kind you would use for a back support, even with the bag underneath (check with ostomy nurse first), or use a leotard-type garment in most cases. We do this a lot with G-tubes. Find other things to occupy the hands too.

After working with alzheimer's and dementia patients for over 20 years I have learned to keep their hands and mind busy. Try playing their favorite music, put a favorite movie or old tv show in the DVD player. At the same time give them a hands on job such as coloring, drawing, a puzzle, blocks or even dominoes. Remember the old game of lining the dominoes up and tapping them just to watch them fall? I have witnessed many dementia patients that still enjoyed watching them fall. They will smile or laugh at it. The goal is keeping their mind and hands busy.

I am in a similar situation, except my father won't be distracted by a puzzle, a stuffed animal, silly putty, etc. He HAS recently become distracted by the elastic band of his diapers--he has added elastic to the list of materials that "hurt" him, including metal and wood. But even letting him mess with the underpants won't keep his hands from drifting back to the ostomy. My mother has tried different types of bags and a band around his waist, all to no effect. In fact, he destroys so many bags she exceeds the number Medicare will pay for monthly and has to purchase them out of pocket. Who knew a poop bag could be so outrageously expensive? This is ruining my mother's quality of life (never mind the multiple changes, not just dumping each day--she has to sleep on the couch and wake up every two hours to deal with the messes he's made). If anyone has ANY other suggestions, I would appreciate it. (As for keeping active during the day in order to help him sleep at night, he has debilitating neuropathy and has refused to even sit in his wheelchair for meals for the past couple of weeks. The hoyer lift has been employed on occasion, but he lashes out violently at the home health workers, who will simply leave when he physically assaults them.)

There are adhesives strips called BRAVO strips you can use to adhere to the outer edge of the wafer. I had to start doing it for my dads ostomy. Also, cut the little tab off the wafer so she can't pull it up.

Correction....they are called Brava barrier strips....the round ones are designed for ostomy patients.

D you /nurses use Brava Coloplast around the wafer? Its elastic barrier strips that conform around the wafer and give extra protection. She may still pick at it, but with the double layer, may not be as easy to undo. I feel for you as living with a husband with Ostomy and Dementia. Sometimes he's cooperative and sometimes not so much.

Do the nurses use Brava Coloplast around the wafer? It's an elastic barrier strip that gives extra support to the wafer. Covers the edges. She may still pick, but could be harder to get to the actual wafer. My husband doesn't pick at the wafer, but it would sometimes get caught at the top of his clothes. The dementia and ostomy are not easy to live with for a caregiver.

Coloplast makes 2 kinds of barrier strips and they will send you samples. We tried the round ones and the ones with little wings added for my mom who is 84 with severe dementia and keeps pulling off the appliance she hates.. The wings gave a bit more time. And if she partially pulled it off, it would re-stick - unlike the wafer. The current problem is that she keeps pulling off the bag from the ring. She is very quick and it makes an awful mess. They want to try an abdominal binder, but that seems like it would prevent proper drainage. I am looking for a solution. Any ideas?