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.
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?
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.
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,
charlotte
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.
It is Best from the Rest to Allow a Doctor to now step in with his Good advice. She of course can argue till the Cows come home but he can also suggest, You also, That "You would not want Protect Services for the Elderly to have to Intervene," Should anything bad happen..."
Def. mention all of this to her primary doctor! Getting her some home care would surely help her and your family. The doctor may go ahead and fill out script for home care being her health has somewhat declined. If an aide went into the home even just to tidy up a few times a week and kinda check things out would probably make a huge difference. There is medicine out there to slow down the progression of her memory loss, start a diary with all of the things that you see going on, maybe there is a pattern? I wish you luck.