My mother has always had a difficult personality, and as time goes on, her personality has become even more difficult. We have been through many aides, but I now have a team in place that she can tolerate and that can tolerate her.
Recently, she has begun to have screaming tantrums when she needs to have her diaper changed. One aide handles the situation like a pro: She advises my mother it is time to change her diaper and proceeds to change the diaper -- even if my mother is screaming at her. My other aides are frightened of my mother's tantrums and have left her sitting in the dirty diaper until my mother is receptive to being changed (and this can be hours later).
My mother has suffered multiple UTI's which can be caused by a dirty diaper, so this situation is of great concern. Has anyone had any experience with this issue? I would hate to have to let some of the more emotionally fragile aides go because they have been with us a long time and my mother is comfortable with them. On the other hand, I feel I cannot allow this situation to continue. I have tried to reason with my mother to allow her diaper to be changed when needed, to no avail: "I'll change it when I'm good and ready!" I've explained the UTI danger, to no avail: "I don't care!"
Any suggestions or advice would be very much appreciated!
Oh, and save your energy on explaining UTI to her. You're wasting your breath. My Alz. mother sometimes refuses to do things, and I tell her when she's done changing into a new clean diaper, or taking a shower, I'll take her out to go shopping. That usually gets her to cooperate.
What does you mother like? What incentive will work with her?
"Screaming tantrums" - what exactly is your mother's objection, though?
If it is anxiety again medication might help.
OR
this is just her having a tantrum like you say. If this is the case then the caregivers that back off need to be TOLD, INSTRUCTED that they are to carry on with the change no matter the screaming that is done.
If they are from an agency you could request other caregivers that will do what needs to be done.
BUT if you mom is doing more than screaming, if she is hitting, biting, scratching then she needs to be either medicated or since this is in your home you can put mitts on her to somewhat restrain her hands. Sometimes giving someone a towel or a soft toy will keep the hands occupied.
I probably would not give her anything to eat during one of these tantrums as she could easily aspirate whatever is in her mouth. But a child's teething toy might work.
You need to hire people who can do just that: push past your mother's tantrums and change her soiled briefs. Otherwise, you're going to have a lot bigger problems to deal with than screaming fits!
Good luck!
While it may be "okay" to struggle through it, screaming and all, it would be better if there was a way to calm her down. I don't know how staff handles this issue, as clearly sitting in soiled briefs isn't good - generally, so they tell me, they can't force someone to do what they refuse to do. They usually have to coax them, promise something good, get them to think it's their idea, etc. Hospice nurse said mom seems to be "shy" now about being changed. It may be that her dementia has progressed further, esp with the stroke. But, much as I dislike medications, I would try that before trying to change a whirling dervish! The nice thing about the one she took, worked first time, every time, usually in about 15 m or so, and no need to wean her off of it if it doesn't work out. If you can find one that she can take a little before the usual changing time and it goes smoothly, go for it!
Otherwise, they'll just have to suck it up and continue bulling through the process. If those aides can't do it, find others. You can't reason with dementia, so trying to explain why the change is needed really won't help.
Any chance you can "foster" a cat or two, for a little while? If not, then so long as no pets in the house, they sell rodent traps with tasty poison... I can't use them, as I don't want the cats to eat a poisoned mouse! Hard to leave traps around too, as the cats could get a nasty nip! Often they do have cats who won't ever be "pets", but if kept in basement with litter, water and food, they might "manage" the rodent problem, then you can send them back. Basements are usually good for cats finding the mice...
Unfortunately she needs to be changed when soiled and her care providers need to change her in a timely manner.
I cannot imagine how hard this is for everyone involved.
My husband has advanced dementia and cannot talk. He too screams when it is time to change his diaper. It does not matter who does it: the caregiver or me. He screams! And he is not bedridden yet, so putting a blanket over the area won’t work. I’d like to hear advice for those who can still sit on the toilet.
UTHIS can happen from many causes and one just not drinking enough water.
UTHIS can be cured easily enough.
Tell the Caregiver to try just letting your mom know ahead of time when she needs to have her diapers changed but tell the Caregiver to tell the mom to let her know when she's ready.
Just use a good night time brand of diapers to keep the urine away from the skin.
UTI's can also happen from too much moisture and diapers leave no breathing or airing out.
You should have your mom lay on pads and not have a diaper on for a few to several hours a day so her private area can air out.
Can someone distract her with an object, shiny toy, doll. stuffed bear, an object, something? Or even talk to her about something? I think an interesting object might be better help and a positive focus Even a child's toy that rattles, or moves might help. Only a couple bucks. They do that for children to distract them so they dont kick out, fidget etc when changing diapers. They get annoyed as well. Altho with adults its called briefs for dignity reasons. They know enuff when someone says time to change diapers. That could make them mad. Just a thought.
Do people make a production about changing her? Like saying ok Christine (i picked a random name) its time to change you, as they gather supplies and get ready. That might be enuff to set her off. Because it was announced, and then it takes a min or 2 to gather supplies, and she has time to think about it and react. Maybe gather supplies first or have them near her, not saying anything. Then quietly do it? It might help, it might make things worse. You'll have to try diff methods to see what works. Maybe say - after your clean, we shall have lunch, snack time? Discuss the yummy food she will have. Maybe she will focus on that. Might help, might do nothing.
Id also call doc. She might need anxiety med. Now its not to drug her, its to help her with her anxiety. We want the senior to be calm and happy. They shouldn't be distressed and upset and miserable. Not multiple times a day. Remember their brain is not functioning properly. So what would be an annoyance could now provoked great anxiety.
Id also see if she is doing it with 1 person but not another, just in case. 1 person might be rougher with her to get it over with. It could be something/nothing. She might not like the way it is done with that person. Or their underlying annoyance with having to do it while she is getting anxious.. She could pick up on that.
My dad had problems with 1 cna he detested.. That was so unlike him. big warning sign. Turned out it was something to be very concerned with. She was fired. She treated elderly like an object to be manhandled. An annoyance to be dealt with. Just something to consider. I never thought about that until I saw his reactions when she was near. Im glad I watched closely.
She could also understand that her privates are out and she wants modesty. Doesnt know how to voice that any more. Especially bc its a carer. A stranger.. You have to be a sleuth. It could be something, it could be nothing.
There was a lady at the nursing home that would easily get anxious and sound off for a long time.. very distressing to her & staff. Her family gave her a doll and a teddy bear, (switched out at different times so it seemed new) and she was very happy hugging it. Never heard a peep out of her, and people stopped to chat about her doll. She loved that and just beamed ear to ear. With guys it might be something with trains. That was huge when they were young.
It could also be that they are in pain when rolled onto their hip. The hip might have arthritis, bone spur etc. That might cause anxiety.. or just being rolled on their side might be scary. The anxiety med might help. Talk to doc. Good luck let us know what works.
It took a little time but once I put together my super crew my old mom does the potty, bathing and grooming with milder resistance, less often. And milder resistance less often makes life much, much better!!
Also heat the wet wipes. No one and I mean no one wants very cold and clammy wipes on their bottom. That could be enuff to set anyone off. They are microwaveable. Just check temp b4 using. That could be the culprit. Cold wipes are a shock to the system. Thats enuff to make anyone yell. Good luck
Also different styles of coverings are important, for example use scissors to cut the sides so you can bring the old one off cleanly and quickly, and don't use the panty style that she has to step into. as they feel very wobbly and vulnerable trying to step one foot into pants. have a heating pad nearby, so the washcloths or disposable wipes are warm and enjoyable, not cold and shocking, and that the air in the room is warm enough or have a nice little space heater blowing on her. Use music, for mood and distraction. . And establish a pattern with it, for example "every time I turn this music box on, we are going to freshen you up, just the way they do the Queen of England!" Consistency is helpful, and reduces opposition. Also a reward directly after... Like "after you are freshened up that's when you get a spritz of your favorite perfume," or "a cookie" or... A small peice of her favorite old time candy. I found creme stick candy in a candy store of a local historical farm, and wow it took mom back to happy childhood memories... I hope some of these are helpful.
Sometimes bribery would work. "How about if we have some juice after we get this taken care of," "OK, how about if I give you 10 minutes and then we'll do it." Sometimes distraction...just chatting as you make the change. As someone else suggested, maybe music. Bottom line: Don't do any thing that will just make the situation worse and escalate things, and please, please, be sensitive and do not use words like "diaper" and "wet the bed" and phrasings that will make your loved one feel mortified and embarrassed. Best wishes!
There may be several reasons why your mother screams at being changed. First as pointed out by others, the word "diaper" is inappropriate for adults. It is degrading and demoralizing. Pick another word and instruct your caregivers to use that word, period.
It is upsetting to see some of the comments above about getting caregivers to "push through", "bull through" etc. and making sure you have caregivers that will do it. Those tactics are unproductive and bullying or medicating an adult to change a brief without exhausting every other remedy could be considered mistreatment/abuse depending on the tactics used. Additionally, not sure what kind of memory unit had screaming residents when they were being changed but how horrible that we allow such treatment of our seniors.
The primary external cause of agitation and behavior is caregiver approach. Others have mentioned abuse, pain, privacy and good calming approaches and music. I hope you will insist on caregivers that are empathetic, trained in Validation techniques and who understand that behavior is a form of communication.
Your caregivers should be looking for the unmet need that causes her behavior. Even if she knew the reason she probably couldn't tell you. Is she in pain, afraid of falling as she sits on the toilet, difficulty in bending knees to sit. Was she sexually abused, teased as a child, she feels exposed, is it painful to urinate, etc. It wasn't her idea, she'd rather do what she was doing instead of being interrupted for a brief change, her dignity and privacy are being mishandled? She resents loosing her independence, she hates her caregiver, she hates being bossed around, ..... just a few thoughts and there are many more.
The caregiver needs to gain her trust. Toileting should begin with a quiet suggestion in her "language." What terms does she use; pee, poop, bathroom, freshen up, toilet, sandbox, tinkle, etc. "Looks like it might be time to....." "Before we have dinner, snack, (whatever) let's stop by the bathroom. "I almost forgot, you probably need to (her word) . So sorry, I can help you now. "I don't need help" Of course you don't. I'll be there just in case. Does she want to be in charge, such as wiping with toilet paper, then the caregiver can finish with a wipe, assuring her that she did a good job, "just a little touch here and you're good to go" Patience and a sense of humor are essential. If the first idea doesn't work, try another one.
Please remember that these individuals aren't children that can be pushed around. They are individuals who still have feelings, needs, and rights. It is our job to preserve their dignity, self esteem and to be the detectives and voice they need so they can receive the best possible care. It isn't a contest of wills, we don't have to be right, we are not the boss. We can skillfully get them to do what is needed for their care using the right approach.
No one said it is an easy job but done right, it is one of the most rewarding jobs you can have.
At first when this started with the PSW's I was alarmed and thought they were hurting her but then it started with me and I realized they, like me, weren't doing anything and the screaming/crying/difficult behaviour was just her way of expressing her displeasure. No abuse was happening but to anyone listening on, they would think she was being murdered (smile).
One PSW works through the tears and difficult behaviours - pushes through and gets the job done. The other PSW doesn't - she gives up at the slightest resistance. I think she is afraid of hurting her and also, she doesn't want anyone whose hearing the commotion to think she's hurting her. Remember their job is on the line and the last thing they want is to be accused of being abusive.
For my mom, I try to put myself in her shoes. She doesn't think anything is wrong with her, she things she can walk when she is bedridden and hasn't walked in over a year. She also doesn't always remember or recognize the PSW's, even though they are there everyday, or me for that matter.
Imagine you're sleeping/resting comfortably and some strange person comes into your room and immediately tries to take off your clothes/your diaper..... or tells you that you've had a bowel movement or pee'd and they have to clean you up......wouldn't you know if you did (and in your mind you haven't), further more why would you do that in bed when you can just get up and use the toilet like a normal person..........I'd be thinking what the hell, I'd be screaming and crying too (smile).
What works for me most times is the appoach..... I start with a little converstation, see where she's at mentally, begin with something not too intrusive like massaging her scalp or brushing her hair.... then I move in for the kill..... why don't I wash your hair with this soothing shampoo..... or instead of saying it's time to reposition you so you don't get pressure sores (what the hell is a pressure soar and why would I get them) I say why don't you turn over so you can see me and we can talk......in the midst of repositioning mention I notice the diaper needs changing and will do that for her quickly. I work my way up to diaper changes, maybe give her the diaper or wipes to hold and ask her to help me.....
I find the direct approach doesn't work sometime because she genuinely doesn't think there is a problem and what needs to be done, has to be done.
With medication, I stopped telling her I'm giving it to her because then she asks what it's for and I have to explain all the aliments she has that she doen't know she has. That confuses her because in her mind she is not sick. I just crush them up and put them in her juice or tell her they are vitamins.
It's hit or miss... some days this all works other days it's a no go. For me, what works best is never rush. Sometimes the PSW's just want to get in and get the job done, since they have other clients and are working with time. Work your way up to the tasks they find unpleasant or too intrusive, timing is everything. Make note of their mood and that will give you an idea of where to go. Be chirppy and pleasant always even when you're stressed - pretend. Talk....let them know what you're going to do, doing as you do it.
Hope this helps. Good luck and best always.
When was the last time she was seen by a doc? She may need an appt to be seen for pain, an update on meds, arthritis, etc. These are just things to consider. She might not be due for an appt. As for anxiety meds no one said to give her one before every brief change. That would be too much in a day. They might give some in the afternoon or lunch so she can get thru the day and doesn't have sundown-ing. Doctors don't throw meds at residents either. Their medical needs are considered. She may not even need that. These are just things to consider as well.. She may just need redirection and calming and quiet at a change.
You just have to see what works. Good luck.
Maybe consider a warm, spray bottle to rinse off her bottom with every diaper change to cleanse urine and bm off. Start with a clear water one to rinse off most offending substances. Use a warm soapy one to cleanse more thoroughly. End with another warm, clear water rinse to get soap off. pat dry and put on a new diaper. Of course, this one is trickier to manage with more water being involved.
If your mother is usually difficult to manage, she may benefit from a mild anti-anxiety agent. This may only be needed during the daytime or in the evenings if she tends to get Sundowner's Syndrome.
Mom has the others bluffed for now. She screams and they back off. You need the General!!! (and I'm not talking about General car insurance!!)
A neighbor had the same issue going on. Mom would dirty diaper on purpose as soon as one aide showed up to work. Demand to be cleaned up in the bed and making the woman do all of the lifting. Just dead weight laying there. The other aid shows up and says stand up, cleans her up, changes the linens and it's done. First lady was just too nice and was terribly afraid to make the patient mad so she caved to her every whim.
useless/like a burden and she is acting out because she can’t communicate those emotions. Or is it possible that she has painful sores? (Try Desitin or other diaper creams). Was she ever sexually assaulted and perhaps drawing some type of connection and feeling violated, but not able to communicate or even realize this?
Try both reassurance and distractions. Tell her she is loved and everything is okay. Hug her. Ask her advice or opinion to make her feel useful and needed. Distract her with her favorite music or TV. Give her something to look at during the change / something else to focus on. A postcard or photo to hold (ask questions about it during the change). Some other distraction from her era/past hobbies/interests? What other distractions does she like? Give her some kind of “treat” she likes when she’s done. Make this as spa like as possible. Diaper and fingernail polish change? Diaper and shoulder massage? Change it up so she doesn’t develop a negative association with something she loves.
This may be a “phase” and once she feels more comfortable, she may stop.
Perhaps try some classical music during this time (before the time to change to relax her) - I see someone just below mentioned this.
Can you comfort her by touching her hair ? face ?
I wonder if your mom thinks someone is going to hurt her? We may never know what her motivations are to resist.
I do not have personal experience with refusal although I don't think there is 'one size fits all' in these situations.
It is difficult when care providers are 'good' in some areas and inexperienced or unable to manage situations when these behaviors erupt. It certainly is not easy for anyone. And, as your mom's behavior increases, you may need to hire others / let go of the caregivers you've had for a while. It is a progressive disease and changes have to be made to accommodate your mom's needs. I know you know this. It is just really hard. Gena.
(This may have been mentioned by others - if so, apologies for the redundancy!)
And all that aside, bless you for all you struggle through for her. I also have a difficult mom (most of the time), as I'm sure many of us do - caregiving is not for sissies! But when I am at my most frustrated, I try to think how frustrated she must be, and I realize I have the easier role.
Hugs to all!!
Is she embarrassed? Is her privacy insured? Could you give her a reward for completing the task without screaming? Does she like baby dolls? Could she change the dolls diaper ( we call them briefs) while the aids change hers. Does she respect her doctor? Could he tell her she’s misbehaving and these aids are his personal friends and she’s mistreating them! Mean spirited but a possibility. Could she do it herself and make a mess out of the effort and seek help? Would a small glass of wine before or after help the situation. Intimidation and shame? What would your ( pick a relative her father, mother, or husband ) think if they knew you’d rather stink than change your brief!!! Leave her alone, (but keep an eye on her) until she calls the aid back?
Or tell her she will have to sit in the hall til the principal comes. Thought I’d end on a lighter note. Good luck.
mom