Help/Advice - Vascular Dementia, bowel cancer and a stoma .....

[Debs0162]

My mom is 77, she has vascular dementia and will not accept that she has any issues with her memory. She asserts she is fine.

Last year she had bowel cancer which resulted in her having a stoma. Post surgery she has been given the all clear which was great news. She has coped so well with her stoma but one battle we are losing is on her retaining the information about what she can eat and what she cant. I have written it all down on a large whiteboard for her which is in the kitchen. My dad is her main carer but he has been in and out of hospital himself so its been difficult. She insists on eating "greens" asparagus, green beans, cabbage, etc, everything she shouldnt this is very bad when you have a stoma and results in constant leeks. We constantly have the same conversation and the information wont stick due to her dementia.

She has never really been a big drinker but now she keeps going to the local tesco and buying brandy and beer and she has started to drink in the evenings and exhibits the sundowning behaviour that I have read about on this site. She gets very agitated and very aggressive. She insists she's not drinking and she is fine and has no problems with her stoma which is wrong - she just forgets. This evening because of poor food choices and alcohol she has used five stoma bags and is rapidly running out....

We have no help with mom's dementia at all. The GP doesnt seem to want to know, we are trying to cope with her on our own but my dad is struggling and he is with her more than anyone (I work full-time and work long hours). The stoma nurse is great but has no experience with dementia patients so cannot give any suitable advice.

Is there any support at all for carers who can give advice and support in how to cope with someone with dementia we are desperate for help but cant seem to get any and dont know whats out there.... Thank you.

 

[Aisling]

My mom is 77, she has vascular dementia and will not accept that she has any issues with her memory. She asserts she is fine.

Last year she had bowel cancer which resulted in her having a stoma. Post surgery she has been given the all clear which was great news. She has coped so well with her stoma but one battle we are losing is on her retaining the information about what she can eat and what she cant. I have written it all down on a large whiteboard for her which is in the kitchen. My dad is her main carer but he has been in and out of hospital himself so its been difficult. She insists on eating "greens" asparagus, green beans, cabbage, etc, everything she shouldnt this is very bad when you have a stoma and results in constant leeks. We constantly have the same conversation and the information wont stick due to her dementia.

She has never really been a big drinker but now she keeps going to the local tesco and buying brandy and beer and she has started to drink in the evenings and exhibits the sundowning behaviour that I have read about on this site. She gets very agitated and very aggressive. She insists she's not drinking and she is fine and has no problems with her stoma which is wrong - she just forgets. This evening because of poor food choices and alcohol she has used five stoma bags and is rapidly running out....

We have no help with mom's dementia at all. The GP doesnt seem to want to know, we are trying to cope with her on our own but my dad is struggling and he is with her more than anyone (I work full-time and work long hours). The stoma nurse is great but has no experience with dementia patients so cannot give any suitable advice.

Is there any support at all for carers who can give advice and support in how to cope with someone with dementia we are desperate for help but cant seem to get any and dont know whats out there.... Thank you.

I don't have any help but have to respond to you. I live in Ireland so just know the system here. Do you have a Social Welfare officer or what we call a district nurse? Can her doctor refer her to someone who can help? It must be so worrying for you.

I hope other TPs see your post soon tonight and respond to you.

Virtual hugs and support,

Aisling.

 

[Debs0162]

I don't have any help but have to respond to you. I live in Ireland so just know the system here. Do you have a Social Welfare officer or what we call a district nurse? Can her doctor refer her to someone who can help? It must be so worrying for you.

I hope other TPs see your post soon tonight and respond to you.

Virtual hugs and support,

Aisling.

thank you Aisling, to be honest the GP has been really unhelpful.... she doesnt have a social worker allocated and I dont know how to go about getting one.... we feel utterly alone with it all ..... I appreciate your reply and thanks for the support. Debs

 

[rhubarbtree]

I had a stoma for about a year so fully understand the food issues. It is so difficult having to forgo the foods we have been drilled to understand are good for us. I still have to avoid brown bread, rice, beans and frizzy drinks. And I am sure you are right to be worried about the brandy and beer. She seems to be craving all the things that will not suit her now.

I am surprised the stoma nurse wasn't able to suggest some medication. I was given a prescription for the tablets we usually take on holiday just in case (hope you can decipher this). Was also told marshmallows are binding.

If I were you I would seek more help from the stoma nurses. They really know everything about the subject.

 

[Clive T]

Mum's had a stoma for 25+ years, and Alzheimer's for just over two. I've come to consider the bag a sort of mixed blessing. At least if there are bowel incontinence problems it's sort of contained.

We were really surprised at how difficult it was to find anyone with any experience of both colostomies and Alzheimer's. Mum's GP was really helpful, but he said he didn't know of another case in the county. The stoma nurses at our local hospital were a mine of useful practical information on coping with the bag, though they, like yours, had no experience of Alzheimer's. The Care Agency we used originally had one or two members of staff who had stoma experience, and they trained a few more.

In truth, we never found anyone else, though that may be simply because we got bored with looking and gave up. I hope someone else on here will be able to give you more practical help.

I'm mum's main carer and eventually after avoiding it for as long as I could, I rolled up my sleeves and taught myself to take care of it. I'm quite proud of the excellence of my stoma bag fitting now (insert big-head show-off smug smile here). It's amazing what you get used to. But, and it's a big but, it's a 24 hour, seven days a week thing. Whilst writing this near midnight mum came downstairs, needing her bag emptying. I imagine it's much worse for your poor dad, how awful for him.

Mum eats everything. I even do chilli with rice, and we don't have that many leaks, maybe one a week. Lots of pasta, which is good, and the stoma nurse recommended giving her Jelly Babies, which with their gelatine content are very effective at thickening everything up. Mum loves them, too.

I do hope someone on here can give you proper advice.

 

[Debs0162]

I had a stoma for about a year so fully understand the food issues. It is so difficult having to forgo the foods we have been drilled to understand are good for us. I still have to avoid brown bread, rice, beans and frizzy drinks. And I am sure you are right to be worried about the brandy and beer. She seems to be craving all the things that will not suit her now.

I am surprised the stoma nurse wasn't able to suggest some medication. I was given a prescription for the tablets we usually take on holiday just in case (hope you can decipher this). Was also told marshmallows are binding.

If I were you I would seek more help from the stoma nurses. They really know everything about the subject.

Many thanks, we have an appointment at the hospital on Thursday for a stoma review.... no help with the dementia but hopefully some more advice about stoma care.

 

[Debs0162]

Mum's had a stoma for 25+ years, and Alzheimer's for just over two. I've come to consider the bag a sort of mixed blessing. At least if there are bowel incontinence problems it's sort of contained.

We were really surprised at how difficult it was to find anyone with any experience of both colostomies and Alzheimer's. Mum's GP was really helpful, but he said he didn't know of another case in the county. The stoma nurses at our local hospital were a mine of useful practical information on coping with the bag, though they, like yours, had no experience of Alzheimer's. The Care Agency we used originally had one or two members of staff who had stoma experience, and they trained a few more.

In truth, we never found anyone else, though that may be simply because we got bored with looking and gave up. I hope someone else on here will be able to give you more practical help.

I'm mum's main carer and eventually after avoiding it for as long as I could, I rolled up my sleeves and taught myself to take care of it. I'm quite proud of the excellence of my stoma bag fitting now (insert big-head show-off smug smile here). It's amazing what you get used to. But, and it's a big but, it's a 24 hour, seven days a week thing. Whilst writing this near midnight mum came downstairs, needing her bag emptying. I imagine it's much worse for your poor dad, how awful for him.

Mum eats everything. I even do chilli with rice, and we don't have that many leaks, maybe one a week. Lots of pasta, which is good, and the stoma nurse recommended giving her Jelly Babies, which with their gelatine content are very effective at thickening everything up. Mum loves them, too.

I do hope someone on here can give you proper advice.

Thank you for your feedback, I will try the sweets and see whether it makes a difference. We have an appointment on Thursday with the hospital about the stoma. Just not help at all for the dementia element and the impact this is having on her - her bag leaks four and five times a day - the blessing is she doesnt remember but her skin is getting sore.

Thanks for taking the time to respond.

 

[AndreaNolan]

My mom is 77, she has vascular dementia and will not accept that she has any issues with her memory. She asserts she is fine.

Last year she had bowel cancer which resulted in her having a stoma. Post surgery she has been given the all clear which was great news. She has coped so well with her stoma but one battle we are losing is on her retaining the information about what she can eat and what she cant. I have written it all down on a large whiteboard for her which is in the kitchen. My dad is her main carer but he has been in and out of hospital himself so its been difficult. She insists on eating "greens" asparagus, green beans, cabbage, etc, everything she shouldnt this is very bad when you have a stoma and results in constant leeks. We constantly have the same conversation and the information wont stick due to her dementia.

She has never really been a big drinker but now she keeps going to the local tesco and buying brandy and beer and she has started to drink in the evenings and exhibits the sundowning behaviour that I have read about on this site. She gets very agitated and very aggressive. She insists she's not drinking and she is fine and has no problems with her stoma which is wrong - she just forgets. This evening because of poor food choices and alcohol she has used five stoma bags and is rapidly running out....

We have no help with mom's dementia at all. The GP doesnt seem to want to know, we are trying to cope with her on our own but my dad is struggling and he is with her more than anyone (I work full-time and work long hours). The stoma nurse is great but has no experience with dementia patients so cannot give any suitable advice.

Is there any support at all for carers who can give advice and support in how to cope with someone with dementia we are desperate for help but cant seem to get any and dont know whats out there.... Thank you.

I also care for my mum who has colon cancer (untreatable), diabetes, vascular dementia and a 13cm prolapsed stoma. As mums understanding of her stoma and bag deteriorate, it’s becoming harder to care for her. I learned to change her bag the day I was diagnosed with breast cancer so a steep learning curve for us both at that time a year ago. There is little help with the dementia, however keeping her as active as possible can help. The doctor recommended giving her Zopiclone to aid sleep and Diazapam to help when she’s agitated and confused. With the bag, I suggest a banana to thicken the output. Avoid cola at night as it can increase output. I use coloplast rings around her stoma for skin protection and elastic curved strips around the flange to help bag adhesion and minimize leaks. Mum also loves her rum ... so I dilute it with coke and avoid bedtime drinks. Keeping your mum hydrated is beneficial, but it can be difficult to encourage water intake! We also need help with mums combined conditions so will share if we are successful. Good luck.

 

[Sarasa]

Hi @AndreaNolan , and welcome to Dementia Talking Point. Just to point out this is a very old thread, you can see the dates at the top of each post, so the original poster is unlikely to reply.
I'm sorry this year has been such a tough one for you and your mother, but your tips sound excellent. Do you have carers coming in or plans to introduce them, as it sounds like you will be needing a little extra help soon?
Keep posting, you might like to start your own thread as I'm sure caring for someone with dementia and a stoma is something that a few of our members are facing. This is a very friendly forum and you'll get lots of help and support here.