@readthetealeaves - My mom’s NP ruled out a UTI and then recommended we buy overnight Depends. The NP said meds were not good for dementia patients.
I’m sorry your loved one is to this point. It’s definitely emotionally hard.
For my mom, after a hospitalization and rehab, she came back to my home with complete incontinence. It was a drastic loss of functioning but it never changed or got better, so I had to deal with it as a permanent situation.
She no longer feels when she needs to go, or if she has already gone. She also has no sense of smell or touch to know or feel when she is wet. I have her in adjustable depends 24/7. For the overnight leaking issues, I have 2-3 waterproof zippered mattress covers on the mattress (they enclose the entire mattress), then her sheet, then a washable pad, then disposable pads on top of her sheet on her bed. The adjustable depends hold a lot of fluid so work pretty well. I also added a half tablet of imodium to her meds each morning (with dr approval) to reduce the almost daily diarrhea issues she developed when donepezil was added to her meds.
My mother took Ditropan XL and it helped quite a bit. She also had chronic UTI’s and was on Trimethoprim prophylaxis.
@readthetealeaves — since your pharmacist already has the list of her drugs pose the question to them. Tell the symptoms and see if they can help pinpoint a cause.
This thread has been very helpful. But do you find that people in real life try to keep their elder problems secret? We all pretend everything is fine to our not-so-close relatives. But when we get behind the facade, everybody becomes more honest. I hate to complain about my situation, and I hate to pry about somebody else’s issues with their parent or parents, but is maintaining the “stiff upper lip” really better? There might be things we could share that would help. I don’t know. Just feeling sad today about my Dad’s generation and the difficulties that aging brings.
I have a core group of friends who definitely are in the loop about my parent struggles. We heavily lean on each other as our parents are all about the same age. I’m not very good at the “stiff upper lip” approach. I’m usually the one blubbering. I have found though that sometimes being the first one to be honest can cause a change reaction with friends, in a positive way.
Hugs @BerneseMtnMom!
@BerneseMtnMom —. Right now I’m worrying about ME in the future. Taking care of my dad is tough but he’s a piece of cake compared to some of the stories!
I DO think there are tips and tricks that can be shared. I’ve already learned a couple here. It’s tough though because everybody has a situation so individualized.
I’m a newbie at this caregiver job in relation to many here. But already I find that I don’t want to talk to anyone about what I’m experiencing on a day to day basis. It sucks pretty much. Figure they know it too.
I want to hear GOOD stuff from others and have conversations that don’t involve health problems at all. I need conversations that lift me up and out of the quagmire. I need gossip and fun stuff. Fine to hear mundane problems too! Had a hard time at DMV? I can do that.
The health stuff is short handed.
I love having this thread because people understand and have concrete suggestions and compassion when you need it most. It’s okay to unload without overloading those closest to me.
Hope this made sense!
Among my closest family and friends, I’m the only one who still has a living parent, so I’m reluctant to give more than a cursory response to “How’s your mom?”. I don’t need to bore people with my issues. People sympathize, but I don’t think they want to hear the details of how hard this can be.
^^^I agree with @shellfell There are some friends who have parents a little younger and are still in good shape, and I do feel free to vent or unload to them when they ask. And I know who is genuinely concerned about me, etc.
But I do have many friends who have lost both parents and so I don’t usually discuss how stressful this is on me. They often ask what is happening and I can give them updates on where I am moving them to etc. But I don’t go to these friends to talk about how hard it is to see my mom struggle with memory etc because that feels very tone-deaf to me.
I agree with all you guys have said. It is very individualized, and while I will try and help my cousins who are just starting down this path, I know their situation with their mom is very different from my situation with my dad. One thing that is similar is there are two sisters, one is close by, one is far off. Another thing is the crushing boredom our parents feel. So I will try to pitch in to help with the boredom thing.
@BerneseMtnMom I used to be very worried about my dad being bored. But as he approached his 90s, he really didn’t need much stimulation. Watch tv, talk to the aides, acquire and prepare food for himself and my stepmother, that was more than enough.
I found the breakdown of different types of loneliness interesting and helpful.
Here, not behind the paywall http://thewashingtonpost.newspaperdirect.com/epaper/iphone/homepage.aspx#_article5023796a-5fd4-48c5-85ed-aab9a56c65b5
But I think this is about the perception. And that might be a bit changed by dementia.
@momofasenior1 @psychmomma @ECmotherx2 and @gouf78 thank you for the replies for the incontinence medicine /side effect issue
@HouseChatte I agree helpful article and I concur with you as well @lookingforward that dementia plays a big role and those dementia challenges make it difficult to do the groups, remedies, and social ideas they suggest. I wish their was an easy answer
@lookingforward there are parents of parents here without dementia.
Why do healthcare providers insist upon scheduling the demented/cognitively impaired, non-driving patients without consulting the caregivers? How are the patients supposed to magically appear at the appointments without anyone knowing the appointment exists? This is so irksome! Surprise—the patient doesn’t show up!?!?!?
@lookingforward, thanks so much for your eloquent, cautionary post 
My mother pulled her colostomy off last night. She has no memory of it. Still forging forward with AL but called a nursing home that will take her, a really nice one, just in case.
Feeling tired! I went through a kid’s brain injury and breast cancer simultaneously and was not tired like this. Sympathies to everyone going through this.
My fantasy would be a three generation household where care of the elder happens kind of naturally. Many of us are doing this alone.
I never, ever talk about this to anyone anymore. Their eyes glaze over and I just feel like a whiner. This forum is great.
My local elder service agency has a support group once a month. It is nice to go and have reciprocal relationships of helping each other within that safe space.
So I lost my mom to brain cancer in 2010…that grief was different than this grief with my dad as dementia slowly takes him away…we had about a year from diagnosis to death and death was inevitable with my mom…I seem to be struck by the sadness of missing my dad now whereas my mom wasnt missed until after her death…I bring this up as I have been randomly sad lately even though nothing has really changed…anyone else?
And I dont share alot about my struggles with my dad or my daughter who is bi polar…I usually lie except to a few closest friends
Yes, losing loved ones to dementia and Alzheimer’s is very tough, especially when have few/no one to support you through the tough times.
I have a support group with other caregivers at my church and another I could go to at the local med center/university. I am someone who needs to talk about it.