How to deal with diaper/underwear changing when they refuse/become aggressive?

The one with dementia is clearly ruling the home, how miserable for all of you. I cannot see how this is sustainable at all, despite your best efforts. This is costing you dearly, and to continue as is will leave your health in tatters. Your mother, if healthy and whole, would never want this for you. She needs a team of caregivers, trained to deal with her behaviors, this only happens in managed care unless she’s extraordinarily wealthy to pay for it in home, a home she soon won’t recognize anymore. Please consider changing the plan, knowing you’ve done your best, and protecting both mom and your wellbeing. I wish you both peace

I was an only child/sole caregiver for my mother. She still had her mind, could make her own medical/daily decisions despite being mostly immobile. She refused to be put on hospice, refused to wear adult undergarments, was demanding and manipulative, she was a terror. She refused to allow EMT’s to take her to the hospital after a fall, she was allowed to refuse bc she answered 2 of 4 cognitive questions. To prove to EMT’s she was fine used her walker, very haphazardly got to the bathroom unassisted. Her will to not go to the hospital was stronger than the force field holding the earth in place. Then she was mad at me for calling 911. I did everything for my mother before she fell ill-the last meal she ever made for me was when I was 12-oven roasted chicken. Now I did even more for her-except think for her. I got about 2 hours of sleep per day. 3 days after the EMT’s came first time I went to get her breakfast she got up on her own. She fell. I wanted to call 911. She insisted she was fine, wanted to get back in her chair to rest. A bit later I offered her a snack she began to call me “mama”. I called 911. She didn’t pass their 4 question test, they promptly took her to the hospital despite her refusal. The ER scene was horrific she screamed for her mama, kept trying to get up, hit and kicked the staff. She finally was exhausted and calmed down. Doc told me she had pneumonia, sepsis, a collapsed lung not to mention her terminal cancer diagnosis. She was admitted to the hospital I went home, slept for the first time in my life it felt like. I went to the hospital next day expecting her to be barely alive. She was sitting up laughing with the nurses, feeding herself breakfast. That lasted 3 days then she declined. They suggested me care for her at home with hospice. No I said I can’t do it anymore. She was accepted into an acute care facility with hospice, she refused to go. Only way it could be paid for was with her social security/Medicaid. She refused to give her bank statements to prove she had no assets etc (she had sold her house etc and moved in with me years prior bc of all her medical bills from 2 battles with stage 4 cancer). The facility explained to me it would be $11,000 up front private pay for 2 months while I did an interdiction, got a judge to grant me POA. The stress landed me in a panic nervous breakdown on the verge of suicide in the ER. My mother was told about my condition, disowned me. Her plan was to move to a hotel, take care of herself. It was deemed for my mental health/her level of care needed/her sudden dementia the hospital would do an interdiction of their own to get her bank statements etc and her admitted to the care facility bc they wanted her out of there. I did not go see her for 4 days. I went back, sat in her room for hours a day as she didn’t know who I was, declined to the point she was barely conscious, not speaking/eating/drinking at all. The hospital decided she did not have long left, allowed her to stay there with comfort care until she passed. She lived out her last 19 days in the hospital. In that 3 days when she rallied after being admitted she called and froze her bank account so I could pay none of her bills while she was in the hospital. I had depleted my savings to pay my bills while I cared for her for years. She also called and canceled her life ins policy. She died. I spent my last $1500 to have her cremated bc I couldn’t afford a burial/service for her. Get your parent the care they need-24/7 home caregivers or at a facility. Step out of the situation, just be her child-go visit her. Let pro’s take over her care. Taking care of yourself is just as important as her being taken care of, you matter. You need your own life because while devoting one’s self to another’s care is noble it’s not required nor is it ok or healthy in any way. I am traumatized by how things played out, riddled with anxiety/guilt, now she’s gone and I must learn to live again. Don’t be me.

You and the doctor know what medications DON'T work now you need to find ones that do.
As frustrating as this is for you it must be frightening for your mom.
As difficult as it is try this a few times. (Until you find meds that work)
Lower the pitch of your voice.
Talk quietly to mom.
Explain EVERYTHING you are going to do.
Get her to the bathroom before she has to go. And yes you need to go with her.
Get her on a every 2 hour bathroom schedule.

Is she compliant with the caregivers that you have at night? If so maybe you need to have caregivers 24/7

As much as you want to keep mom home it is very possible that she needs a facility where there is staff 24/7 that can meet her care needs. Keeping someone at home is the goal every caregiver wants but sometimes it is not the best thing for the person you are caring for.

So very sorry to read about the loss of your dad. I'm sure it was heartbreaking.
My mom would act out in different ways...she was particularly combative with some of the aides that came to help her. The doctor put her on Seroquel, which seemed to help a great deal to keep her mood more consistent. You have a few things you are dealing with....your mom should be using an adult diaper, at least to stop her from urinating on her clothes. Her reactions could be a combination of dementia, but also uti can cause terrible hallucinations and can be frightening to our loved ones. I've had patients that did not want to take a shower or get cleaned up, they would actually develop shower fear ...And I got very good at giving sponge baths, using buckets of warm soapy water, (baby bath only on private parts) and washing hair in the sink. Sometimes seniors who are agitated get very nervous about having a shower or even to be touched. Yes unfortunately this is kind of the New normal...so if you can, get as much help as you can so that you can keep your sanity. Sometimes I and two other CNAs would work with the same patient in their home and we would each have 8-hour shifts... That works well for those who can afford it because three CNAs work together to make sure all your mom's needs are met. This would be my choice as I get older.
Or possibly memory care in a nursing facility would be something you might consider.
None of this is anything that you are doing wrong and unfortunately it is very common behavior. You are doing the best you can.
Try contacting care.com look into home care in your area. My best to you and your family.

I agree, maybe time to place Mom.

I’m sure you know that you can’t go on as you are for your sake. I agree with the suggestions that you move her to a facility where the staff is trained in handling those behaviors. They can call on more help if needed as well. My mother is not combative and she used to be fine with having me help her, well other than being embarrassed that she needed help. Once we hired caregivers and then moved her to memory care she lets others do more than she now lets me do because “they are professionals.” I also have to remind her of this when she starts to need any type of help but claims she can do things herself and won’t let caregivers do it. I sometimes feel like I am being lazy letting them do so much but in all honesty I enjoy not having to do the things she fights! You and your brother are her children and it probably seems wrong and embarrassing to her to need her children to help with personal hygiene. You need to find more help than just you and your brother, be it in home care or in a facility. I felt guilty about putting my mother in memory care but it has been the best thing for both of us. It is time to let professional caregivers take over! She may even let them do more than she will let you do and you will all be better off for it!

For all the professional caregivers in this forum, please know how much families appreciate all you do, even when your charges don’t!

You do not have the qualifications to remove your own appendix. Same with dealing with a dementia patient. Find her a memory care home or skilled nursing.

You need to place her in memory care. This can only get worse, not better. Professionals are accustomed to this behavior and will know how to handle her.

She may need her medications assessed. Ask her doctor, but I'm pretty sure doctor will suggest placing her. There comes a time when home care is no longer sustainable, and that's where you are now. Very sorry.

I can relate to so much of what you describe with your mother! Except for me, it is my 64 yr old husband. He suffered a stroke with significant brain damage 10 years ago.
Every diaper change is traumatic for him. He yells "help! help!".. and squirms and thrashes about, sometimes grabbing my hand, and pulling away so I can't clean him. I am not rough. I try to be gentle, although fighting him to get it done, I feel I'm probably using more force than if he were relaxed and cooperative.

He also does not respond well to benzodiazepines. It just makes him more agitated. And while some meds, like depakote, have been effective in keeping him calm and content, as long as he is already comfortable, and sitting up in his recliner watching tv, or laying in bed watching tv, he still gets so upset about diaper changes and any attempt to clean him; his face, his hands, nails, he pulls away.
I've had doctors and nurses explain that he is extra sensitive, and also vulnerable and feels like he is "under attack".

Your mother's care needs are more than you can manage at home. You are getting stressed, frustrated, physically and mentally worn out. Yes, it is difficult. And there's not much you can do to make it any easier. She needs to be in a skilled nursing facility where trained staff, who get to go home and sleep after their work shift, can tend to her needs. The skilled nursing facility will try medications to keep her behavior more manageable. She may need to be "doped up", but she will be safe and have her care needs met by competent workers.

In answer to your question, you can't stop the escalation,and it will just get worse. Dementia is not a condition allowing improvement. We are programmed to think things will improve, this won't.
Your mother before be all this would not want this for you. In memory care she can be managed and helped by people who can more easily see it as a job than you.. because it is their job.
We all think when we are in these situations that we are expected to go down with the ship.. we keep fighting to put things back together.. I wonder if we do more harm than good. When I was in a similar situation, I look back and see nothing I did as of any use. My dad just hated me more and I am forever broken by it.
It's care home time.