She's afraid to drink or sleep, gets dehydrated, and goes crazy. My aunt lives at home alone with alternating 24-hour caregivers, but we're having trouble keeping the workers because she's so uncooperative. She needs to wear diapers for her incontinence but refuses because "the man who takes out the trash might notice." She is not sleeping at night and is up many times going to the bathroom, trying to avoid wetting the bed. Then she's so tired she can't get up in the morning. She has bed alarms that alert the caregiver so they can help her when she gets up, so they don't sleep either. Her other "solution" is to limit fluids. They give her water but can't make her drink. Then she gets dehydrated and ends up in the hospital. She stays a while, they get her fluids up, she starts to feel like herself, then she checks herself out and goes home. Then the process starts again. So, she's suffering from the dementia of dehydration and sleep deprivation much of the time. Then she doesn't recognize the house she's lived in for 30 years, etc., etc. We brought her a bag full of different diaper samples for her to try and she got extremely angry that we had even considered that she might need them. And that was on a good day. Any suggestions?
I'm surprised that she can worry about "what the man" may think. That requires some logic. I assume you've all tried to tell her that everything is wrapped up and hidden just like when she had menstrual periods so that the man won't even know, so I'm not sure what else you can do.
I remember trying to convince my dad that he could "go" when we were out and there was no bathroom for him to use. I'd let him know that he was wearing a pad so it was okay but he'd say "I can't wet my pants!" Yet, when we returned home, he had urinated. It's just amazing that your aunt has this kind of fixation and the control to keep it up.
This will pass - she'll get to a place where she won't notice or care. But until then you have a real problem on your hands. I hope others on the site have some ideas for you.
Please keep us posted.
Carol
We never speak of the pads except just her and me, and only in private. If you can convince her to speak to the caregivers in private so that "the man" doesn't know about them, that might help. Despite my mom's close relationship with my husband, she gets quite upset if he sees a pad or hears a pad conversation. She admits to me that she realizes he must "know" but she can't bring herself to let him see/hear all this.
We have little garbage cans in the bathrooms that we have liners in. In my mom's case, when these are full (of pads), she ties them up puts a new liner in, and either throws them out or leaves the tied-up bag by the can and my husband or I will take it and throw it out.
If someone could say to your aunt, "Look, what we'll do is this - we'll tie them up in bags that you can't see-through and the man won't have any idea what's in here," would that help?
As for the drinking, that's hard. I struggled with my mom but every doctor insisted. I got every doctor and every nurse of every visit for every thing to tell her why they wanted her to drink water. She heard it from the experts. She heard it often. She hated it but hates the dementia even more and I've been able to get her into a liquid routine. I have a two-liter plastic bottle. I've marked the ounces and I take liquids out every time she drinks. If she drinks water, it comes from that bottle. If she drinks non-caf tea or coffee, the water comes from that bottle. If she drinks something else, I pour that much out of the bottle. We have a deal that I "won't try to trick her into drinking extra" and she watches me do this. I don't know if your aunt's caregivers could try any of this.
I found that if I make mom a mug of non-caf/herbal tea or non-caf coffee that she's more likely to drink it. If I give her a glass of water, she doesn't take it that seriously, but maybe because I took the trouble to make a hot beverage or because we would be wasting money on the tea bag or coffee? I don't exactly know why, but she always finishes them if they're not plain water. Also, if it's iced tea (non-caf/herbal), she'll always drink that, too.
As for sleeping, my mom doesn't sleep well and took so many day naps that she was rumbling around all night and I do my best to try to get her to stay up so that I can sleep at night, too. Sometimes, a little excuse about a timed event works, such as, "It's time to eat lunch" or "It's time to play cards."
We call them special panties or briefs. I instruct any care giver we have for her to refer to them the same way.
You don't say what kind of meds she's on. I'm interested to know if she's on any diuretics for heart failure. That can certainly cause the see-saw you're seeing. Generally, at least for mom, it indicated she was getting dehydrated from over-medicating with diuretics. Once the body gets good and dehydrated, a person's thirst mechanism gets so messed up, they continue down that road.
Forcing her to drink water isn't the answer. Having a big glass of ice water at arm's length at all times is better. Let her body regulate itself.
If she's taking diuretics, I ABSOLUTELY would consider she's being dehydrated by her meds . . . her body goes into almost shutdown mode to compensate . . . and, if it goes on long enough, she loses her sense of thirst making it worse.
I would discuss your concerns with her doctor.
Getting caregivers who are on regular shifts (8-12h) instead of staying 24 hours would remove the concern about them sleeping, which would make their response faster. Besides, they're usually not paid for 24 hours even though they're on duty, so that's not fair to them. The amount is usually below minimum wage when it's applied to the whole time they're working.
When I dealt with a woman who often didn't remember to go to the bathroom in time, her neice & I eventually decided to remove all the underwear from her dresser (put them where she couldn't find them) and replaced them with diapers.
She also dumped the dirty ones in the bathtub, so I'd put the trash can in the tub (but she'd put it somewhere else, then continue putting the dirty diapers in the bathtub).
When an elderly person needs help with incontinence, a lady wears a "women's undergarment" and a man wears a "brief". I have elderly patients and this is how I refer to Depends-like pads. I never, ever say "diapers".
I've seen that before, when an elderly person (usually a woman) won't drink water because she doesn't want to urinate in her pants. There are other ways to get fluids into her. There's applesauce, tea (hot and iced), watermelon, popsicles, coffee (decaf).....When I was little and had a stomach bug my mom would give me the syrup out of a can of peaches. She'd give it to me separately than the peaches so I had two treats. Get creative and do what you can to keep her hydrated.
Mom doesn't have any issues with wearing disposable panties. She tires very hard not to go in them, though. She is distressed when she "leaks" while waiting for help from two aides to get her to the bathroom, but quickly gets over it when they clean her and change her.
Before she needed full disposables, she wore pads in her regular panties. We simply put gads in every pantie as it came from the dryer, before it went into her drawer. Maybe that transition helped her accept the full panties. That approach might be worth a try.
I agree with having a separate night shift of aides, if she regularly gets up. She needs help from someone who is awake and immediately ready to help.
My daughter hates getting up at night and stops drinking in late afternoon. But she drinks lots and lots of liquids during the day. Maybe this would be a way for you to "agree" with mom and cooperate with her not wanting to drink. Push fluids during the day and then say, "OK, now it is time for no more water." Have soups and other "wet" foods for the evening meal.
This is such a common issue for caregivers to deal with. Please come back and tell us what you try and how it works for you.