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Having such a difficult time with my MIL. She was placed about 3 months ago in a nursing home after three emergency room visits for leg pain. While at home prior, my husband and I were preparing her medications, doing groceries, and for several years have been paying all of her bills. She began not taking her medications, the final straw was when we went to fill them there were two full days she hadn't taken. Now that she is placed, she is adjusting well and engaging according to her doctor at the facility, and everything sounds wonderful. When we visit, she doesn't understand why she is there, and wants to go back to her home where she can live without assistance. She is at the stage where she remembers nothing short-term, or has a good day and can remember different S/T things. She gets to the point where she gets so upset when we visit because she asks about going home. Thanks to your previous posts, we have told her the doctor determines when she can go home, and that just makes her angrier, and she calls the doctors crazy. This is taking its toll on both of us but more so my husband. I have told him to not visit as often but he feels guilty. We were doing her laundry, and it appears that she is now washing her own undergarments rather than putting them in the laundry basket, and we rarely have a full basket. She is hoarding towels from the facility and toilet paper rolls. Just looking for some rational feedback. Truly appreciate the folks who have taken time to post on other forum questions.

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The hoarding is not uncommon among people with dementia and with elders who don't have it. Especially ones who are living in care facility. They will hoard food, toilet paper, all kinds of things because they worry constantly that they won't have enough.

Care facility life is very different than life in your regular home. At home you eat or drink whenever you want, have as much as you want, and you choose what you have. In a care facility they choose what you have. And when. And how much.

Your MIL stockpiling toilet paper and paper towels is probably because she's incontinent. Good for her washing her own drawers if she's been incontinent in them. If you or I peed or crapped ourselves we would immediately rinse the soiled garment out and hang it up. Then put it for the laundry.

Your MIL likely still understands that a laundry basket full of pissy and pooped clothes is going to stink and has enough of her faculties to know that it's gross. Good for her trying to be dignified and not leave that mess for someone else. Your MIL washing her things by hand should be encouraged. At the AL I worked at there were lots of ladies who did hand washing and would have the clothes hanging up all over their rooms. Housekeeping or family just collected them and did the wash.

If you're not getting a full laundry basket when you go to pick up her wash, look around for clothes that were washed by hand. You'll be able to tell which ones they are. Then just discreetly take them and do them in the machine with actual laundry detergent. No harm done.

In fact, if your MIL has enough space in her room get her a small, wooden drying rack and tell her if she rinses something out to hang it on the rack. Set it up for her with a rubber mat under it so the floor doesn't get wet. We had ladies who had drying racks in their rooms or bathrooms.

Don't visit for a few weeks. Have a friend collect her laundry. Then come back. MIL needs to acclimate to her new life and she won't if her family is around.

Talk to the staff. Or have someone she doesn't know observe her for a day, She may be doing very well and even enjoying herself, but will turn on the hysterics and anger when you and her son show up. It's like flipping a switch. The second family shows up the begging, crying, agitation, and hysterics get turned on. This is also so common. She may never stop this. Some don't.
I'd wait on having 'meds' prescribed until you learn how she's doing and interacting when you and her son are not there.
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Reply to BurntCaregiver
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You can share your concerns with the facility rep and let them manage the issues they can. I learned to not try to fix everything. As my LO changed, the issues change. Looking back….I’d be much less focused on things I can’t control as it was quite stressful. I tired to switch the conversation to positive things and distract her from negativity. I focused on reinforcing how much people in the facility liked her and enjoyed her being there. I often showed up with balloons and treats to celebrate the great news ……what? I just said it was good news about her. She just understood it was a good thing and it’d make her smile for a while. I’m not sure what her level if cognition is, but you can adjust your responses to her accordingly. I think it’s difficult to accept that seniors often are not happy or content, no matter where they are, It sounds like your husband may be struggling with that,
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BurntCaregiver Mar 16, 2024
@Sunnygirl

What a good idea to show up with ballons and treats to celebrate whatever good news you come up with. I imagine this would help with some of the negativity.
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Please do not let the complaints and down attitude get to to you. You are family, and not only that, likely seen as "children" in some respect. And you will get the complaining and down side more than anyone else. I'm going through it and know how wearing it can be.

But I know from talking to the staff, my mom is engaging in activities and with the people and staff. The activities director for the memory care floor told me just this week that my mom is such a joy to have around and likes to be helpful to others, they do puzzles together (a favorite activity that mom and I used to do all the time when I visited home), attends all the activities, etc. Yet when I ask her what she's been doing, the answer is always, "Nothing. There's nothing to do here, I don't have enough to do. I hate it here...etc." Don't assume that how she interacts with you is the same as she interacts with the other people around her.

Visit less often if it's causing so much mental distress. That's my best advice. For my own mental and emotional stability, I usually only visit mom twice every week so I can check on how she is and how her care is going. About a week past I had a care plan meeting with the director and nurse from the memory care floor.

Find a support group where you (and your husband) can talk about the difficulties and worries you are having. Many of them are typical, but it's difficult to process and accept that this is the way it is now. I try not to overburden my friends too much if I don't have to. It's a conversation damper to talk about such a stressful situation too often with them. Most people don't really understand unless they have been through it. And it often does feel overwhelming. Make sure you are getting sleep and relaxation, and stay involved with your own hobbies and groups that bring you pleasure. Your own care is just as important.
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BurntCaregiver Mar 16, 2024
@Missymiss

Exactly. I remember when my friend placed her mother in the AL where I was a supervisor.
This woman was the life of the party. A real social butterfly. The second her daughter and granddaughter showed up, it was like she flipped a switch.

She was starving because we fed her garbage (garbage that prepared in the kitchen of our chef who was a graduate of the Cordon Bleu). Everyone was stealing from her, sneaking in her room at night, and hitting her.

One day my poor friend was in tears after the "performance" her mother gave. So I called her mother out in front of my friend and her granddaughter. I asked her why she went up to the buffet three times if the food was so bad. Why she was playing cards and laughing with her friends not half an hour before her family showed up. I reminded her that I see her every day all day so I know what her life was like with us.

She refused to speak to her daughter and granddaughter for several weeks and removed them from her visitor's list. She got over that. She never spoke to me again. I was then the villian of her 'performances'. This didn't bother me because I just ignored her except when it was time for her medication. The act she put on for her family changed and I became the new villian in her 'performances'.
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Thank you AlvaDeer. We struggle with the "fiblets". You have given us a great explanation of the current situation and it is most appreciated.
Take care!!
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Reply to HopefortheBest
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Continence problem cover-up?

Towels, toilet rolls being kept & underwear not being in the washing basket.. Accidents & embarressment would be my first guess.

I'd discuss this with the Managaer. Request feedback from the usual care staff on MIL's toileting behaviour. Usual culprits are change in diet, change in meds, UTI, constipation with overload.

A bowel chart may needed for a while. To see if MIL is 'regular'.

Incontinence is common due to weaking muscles but can also have neurological reasons ie altered brain signals.

Pullups (disposable continence underwear) may be good to trial. Comfortable, look like regular underwear but no need to wash.
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waytomisery Mar 16, 2024
Very well could be a new incontinence issue . I should have thought of that !!
Even with Depends my mother was hiding clothes that were wet because she stopped remembering to change the depend often enough plus it was getting more difficult for her to do on her own.
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I blamed it on the doctor when my mother first went to a facility to keep her calmer in the very beginning . When that stopped working , I switched to “you need to stay where there are nurses all day and night “.

If I had told my mother, when she first went to the facility, that she could not go home , I think it would have given her another stroke or heart attack, or made her flip out and end up in a psychiatric hospital . I had to let her adjust slowly . I realize that for other’s this would give false hope that they were going home and create a problem . Each person is different . Eventually my mother realized she wasn’t going home and she cried. But like I said , for her it was better to not be told that right away because of severe anxiety and agitation until they got her meds figured out.

My father in law was not as far gone as my mother , so we told him the truth that he had to stay . As his dementia got worse , telling him that he could not leave , he got agitated . We switched to “ you have to stay where there are nurses “. When that didn’t work we told him that the doctor says “ you are frail and need to be here.”
Which was the truth at the time .

You may have to switch to telling her she has to stay there where she can get assistance , or she has to stay where there are nurses in case of emergencies. My FIL used to argue that he did not need help .

My mother did weird things with laundry. We had the facility doing the laundry . They were made aware and would go in her room and take the laundry while she was eating in the dining room.
Many hoard things. Often it’s eating utensils . When I worked in facilities I would find them in the dresser drawers , nightstand , in the storage on their walkers . My father in law hoarded napkins and bananas . My mother hoarded, cake and muffins . I used to have to clean out her room of food .

Your husband should not feel guilty .
His mother has a broken brain and she can’t understand . Your husband didht cause that. Yes , it is sad , but he should not feel guilty. I know it’s hard because he sees Mom upset .
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HopefortheBest Mar 16, 2024
Thank you so much for your thoughtful reply. It was full of wonderful information. She is "storing" utensils and cups behind curtains and in her drawers. Feel better hearing from someone that worked in facilities.
Thank you again and have a great day!
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She's taking meds, but for what? She needs ones for depression, anxiety, agitation. Talk to her doctor about it.

Also, when you visit, go in the morning, not the afternoons. She may be Sundowning and so her prior home may not be the one she wants to go to, but the one of her youth. Not sure about the hoarding but that's the least of the issues. How often are you visiting? Does the facility have activities that you can take her to? When you visit her, leave while she is at the activity (and have a staff member sit with her and then you transition away to go home).
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HopefortheBest Mar 16, 2024
Thank you for your thoughtful reply. This is great suggestions. She does take an anxiety medication but it will definitely need to be addressed. The facility notes state she is adjusting well and engaging in activities. They do not see the same thing we are seeing so we will be scheduling a meeting with the staff as we have not had a follow up since she was admitted. Appreciate your help.
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To be honest I would be honest.
It's the best way.
Don't expect there to be no tears, no anger, no lashing out. This is yet another dreadful loss. There is little to be happy about here and this is worth mourning. Assure her that you mourn this loss for her as well, but that she is no longer safe on her own.

This will likely be something you endure ongoing. She sees you as having an answer, THE answer, the place to go for for her with your support. You must make it clear that isn't going to ever happen again and it is a source of great grief to you all, but especially to her.

I don't believe in the "therapeutic lie". They don't work over time, and are seldom therapeutic.
I sure wish you the best. This is horrifically sad. For you all.
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