Hi there,

My mother and I are caring for my 82 y/o grandmother who lives with my grandfather. We only live 5 minutes away and see her every Saturday.

She was diagnosed with Alzheimer’s disease about 7/8 years ago. We consider her to be progressing into moderate stages and have noticed a deterioration over the past while.

Her social skills are great. She still has her bubbly personality, always cracking witty jokes and knows all her close friends and family. When talking to her, you wouldn’t know she has Alzheimer’s except for the constant repeating. She hides her disease very well.

However, her living situation at home is different. While we let her help out with little chores around the house, (she doesn’t take no for an answer) her hygiene has declined. She has stopped changing her clothes and usually wears the same thing everyday unless we tell her to change.

She has been wearing a colostomy bag since she was 40 and we think she might be starting to struggle with it. We went into her bedroom to change her sheets and noticed a big stain in her sheets where the bag must have leaked. We also noticed the same stains in her sweaters. She never told us about these mishaps or even tried to hide them. We don’t know if she has even noticed.

Her room has always been untidy with clothes and old junk lying everywhere (which she cherishes) but now we noticed that she’s dumping her used bags with all her junk instead of putting them into a bin.

She is not incontinent and has never had any mishaps other than the bag leaking. She is still able to use the bathroom without any issue and always washes her hands. She seems to be able to change her bag and knows the routine. She has gotten very thin lately even though her appetite is great but we reckon that because she has lost a lot of weight, the bag may not be fitting properly.

We can’t talk to her about it. Any time we try to talk her about it, she will get defensive and deny everything. She won’t accept any help and will not allow us to organize home help either. She does not trust anyone going into her room. She gets quite aggressive if we bring up these subjects. My grandfather is no help either. He does not want any part of it and will usually stay out of it. He is very lazy and doesn’t even tidy the house.

She is due for a checkup with the doctor so that will be our next plan of action.

A few questions that I have are:

Is her disease progressing? Is there any further steps we can take to slow it down or even just help her?

Can we get smaller cholostomy bags that are a better fit? Should we mention it at her next doctors appointment?

Should we try to push the idea of home help? Just with keeping the house tidy?

any advice and information would be greatly appreciated.

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Generally, a person who has Alzheimers will progress to the point that they cannot live alone. She may live with your grandfather, but, he may not be able or willing to provide the hands on care she needs. He may also be in denial. Has she appointed a Durable POA and Healthcare POA? (Would grandfather stand in your way on this?) Now would be time for the POAs to step up and figure out the next steps, imo.

Can someone go and stay in her house with her for a couple of days? You might come up with a reason for the visit. That way you can really observe what she is able to do. For short periods, people can cover up their issues, but, for longer periods, it's harder for them to do. I'd make a list of what you find, so you can share it with the doctor. Even if she disagrees, the doctor might think she needs more help in the home. I would be VERY concerned about the colostomy bag not being handled properly. This could be extremely dangerous. Eventually people need direct assistance with their daily activities. Check on expired food in fridge, dirty laundry, unpaid bills, dents in car, etc.

I'd be wary of anything she reports to you, because, often the person with dementia is not able to see things clearly or report them accurately. And trying to confront her, reason with her, convince her......generally, they just don't work. She likely isn't able to do what you want and a doctor's order might appeal to her more. And, if that doesn't work, I'd seek legal advice from an Elder Law attorney. The attorney can explain the legal process and what evidence you'll need to help her.

You can discuss medication for her condition with her doctor. Are you sure she wasn't prescribed meds years ago when she was first diagnosed?
Helpful Answer (8)
Reply to Sunnygirl1

Regarding the colostomy bag, you are correct in that GM probably lost weight. That can be fixed by having an ostomy nurse re-measure the stoma and adjust the wafer circumference that is placed around the stoma on which the bag itself is attached.
Helpful Answer (8)
Reply to Shane1124

Hi Margaret,

I had a colostomy bag for ten months so I’ll share what I learned: The bag is fitted to the stoma, as someone else said, and It should be measured periodically to check correct fit. The stoma changes but not like you’d attribute to weight gain or loss.

If you ask for a smaller bag, it’s likely that’s exactly what you’ll get, a smaller bag to contain the poop. I’m not sure that’s what you want. So it’s a good idea to get an ostomy nurse in to see she gets the right bag that fits and is easy to change.

There are many different brands of colostomy bags with different ways of securing them. Since you’ve observed her hygeine habits deteriating it may be that she’s not securing her bag correctly to prevent leaks.

The bag should be dumped once or twice a day and changed altogether every 3 days. They will leak if over full, if worn too many days, if not secured properly, and if gas gets trapped inside causing it to balloon (it can pop!).

Sanitation is a safety first issue to me and those bags need to be disposed of properly. Maybe set up a wastebin just for her used bags in the bathroom? You can get disposable bed pads and large disposable wipes prescribed for her. The ostomy nurse can help with that and there’s many other products that she/he can order for you such as skin care cleansers and lotions, antibacterial ointments, deodorizers and much more.

I can’t imagine having to mess with a colostomy bag while being old and weak and forgetful. Your poor grandma.

Good luck,
Helpful Answer (8)
Reply to CharK60

There is really nothing that will slow down the progression. Maybe in early stages but not later on. And really, do you want her in a confused state longer than she should be.

If you only see her on weekends, how do you know how she eats when ur not there. Dementia/ALZ people usually don't eat. They forget to and their brains don't tell the body its hungry or thirsty.

Yes, of course mention the bag at the next visit. Make a list of what you said here and have the nurse give it to him before ur appt.

Forcing homecare on her will not work. She has the right to kick them out. I also would have her evaluated to see what stage she is in at this point. If gpa is no help, she may be better in LTC. Medicaid can be applied for as gpa being the Community spouse. Assets will be split accordingly so he can continue to live where he is and pay his bills.
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Reply to JoAnn29

I don't have advise concerning the colostomy bag, but I will emphasize that it is imperative that you succeed in getting help in the home for your grandmother. The fact is that as she ages, she will need more help, not less, and she is showing signs of being overwhelmed. In addition, a regular visit by a housekeeper or home health aide amounts to a mid-week well check, particularly if you have the same person every time. My Mom was very opposed to in-home help even through she qualified through her local senior council for light housekeeping once a week for 3 hours. She didn't see the need for it. I think she literally couldn't see the accumulation of dust, dirt, etc. I was able to convince her to try it once by promising to be there with her when the helper was there. We came up with a list of things mom felt okay with "Heather" to do and posted it on the refrigerator. Heather was lovely and professional, and it so happens quite tall (which we weren't). After Heather left, I commented on that fact. "Just think of all the dusty spots Heather could reach easily that we couldn't!" She laughed. There was a glimmer of hope. So, Heather came back the next week. I was there again with mom. We added a couple more things to the list on the fridge. You get the idea. With my assistance, she slowly adjusted to a stranger coming into the home to give her a hand. The house was neater and cleaner. By the third or fourth time, I didn't need to be there, but made sure to remind her of Heather's immanent arrival and to reinforce the positive effect of Heather's help after she left. I was glad this worked because about two months later, mom got sick, was hospitalized and had to have home aides come in daily as she recuperated after rehab. This went better than I could hope, maybe in part due to the success with Heather. Before Heather, mom was resistant to change, resistant to help from strangers, and not able to even recognize just how bad her house had become. Sometimes you have to give up a little independence to maintain independence. And by the way, if you are asking, why didn't daughter clean, I did some, but my responsibilities everything else they needed assistance with which was an awful lot due to several medical crises for mom and dad; these crises act as catalysts to actions such as power of attorney and applications to medicaid services. Your grandmother is at the point where her care needs to change and if she desires to stay in her home, she must accept help there. Needless-to-say, you/your family must do everything possible to convince grandparents to allow in-home help, or they will have to relinquish much more of their freedom if a move to assisted living or a nursing home becomes necessary. Without knowing their finances, sometimes assisted living isn't an option. It is too expensive. Because mom learned to accept help in the home, she was able to live independently for two more years and that was better for her since she was such a self-reliant person. Hope this helps!
Helpful Answer (5)
Reply to lynina2

Hi. I know your struggles and concerns. My mother has an ileostomy and AD. I’ve repeatedly tried to research how to manage living with both and all I could find were articles saying there needs to be more research in this area. Fortunately for me dad can help some, despite his own bit of dementia (they are together in assisted living). If your grandmother will listen to the doctor that is your best bet. My parents have always been good about listening to their doc and so I always brief the docs BEFORE any visit so anything the doc says they don’t dismiss it as having come from me. The doctor could mention that he notices her weight loss and therefore thinks it is time for a visit with the ostomy nurse. One place I did find some useful information was with the ostomy nurses on staff at the supply company. They were able to talk me through the different equipment options. They would also send free samples so we could try things to find what would work best for my mother. Two things that helped were bags with charcoal filters and an ostomy belt. The charcoal filters allowed gas to escape the bag so there would not be tension at the connection to the wafer. The ostomy belt attaches to the ring of the bag and circles the body, keeping the bag closer to the body.
It was also my parents’ doctor who let them know it was time for additional help. They could not handle in-home help (caused them both too much anxiety) so they agreed to move to assisted living based on what their doctor was telling them. At some point, perhaps even now, your grandmother will simply have to have help, and if she listens to the doctor, the doc may be able to convince her of this. My heart goes out to you. This will be a very difficult road. But you have found a great place of support here in this forum. Please come here often, whether to seek guidance or just to vent. Wishing you strength and good sources of wisdom.
Helpful Answer (4)
Reply to MelissaPA2AZ

It's obvious that your grandmother needs more attention. Since you are only 5 min away, could you visit more often? Perhaps you and your mother could visit at separate times. If your grandmother isn't eating well your grandfather probably isn't either. Bring some home cooking.
Helpful Answer (4)
Reply to Bigsister7

As has been suggested I would definitely get an ostomy care nurse involved. She could also be having some skin problems which could cause her pouching system not to adhere properly. You can find one through the supplier she uses for her supplies. Or you can find them through most hospital “wound care” departments. I would definitely solicit the help of her physician. My best to you.
Helpful Answer (4)
Reply to Pwberg

To all of your questions the answer is Yes. She needs help....but is too proud to ask for it. ;-) Most elderly are.
Helpful Answer (3)
Reply to mmcmahon12000

Most elders will not ask for help. My mother did not. She also had "accidents" in her pants and then lied about it. She also wore those same smelly clothes. Perhaps APS should be called.
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Reply to Llamalover47

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