Essential caregiver. Is this something anyone else has experienced?

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Essential caregiver. Is this something anyone else has experienced?

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After months of waiting, I’ve been allowed in my mothers AL apt. We have some great caregivers and staff and I’m grateful. My question is about the state of my moms apt. She has packed boxes everywhere! A rolling suitcase I’ve never seen before? There are papers, dust boxes and bags of things all over. She’s on a walker and I can’t imagine how she even gets around in her room. I have no idea where to even start, bc she won’t let me move anything. Is this something anyone else has experienced? Her apt is a studio and very small.

Assisted Living Home Safety Mobility

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No, it doesn't seem to get easier.

Talked to my brother yesterday for a minute and we discussed mom's hyper drive into hoarding since the pandemic began. She refuses to throw out the boxes that anything came in, b/c she thinks that when she 'goes' it will somehow help us. EMPTY BOXES. Dozens.

YB was mostly concerned (which is not very much) about the piles of books (so slippery with the dust covers on) and the piles of puzzles. Literally over 100 puzzles, as she orders between 10-20 new ones per month. Back when she could take a bunch to the Sr Center and be 'noticed' for her contribution has passed and she may never go back to the Sr Center, it isn't going to open up before summer, if then. Both YB and I offered to take all the books and puzzles there for her but she would not allow us to do that. She NEEDS the 'attention' that comes with being generous. I get it, but in the meantime, you cannot walk through her house without knocking over piles of junk. It is beyond frustrating, and dangerous to boot.

PLUS, people know she loves puzzles, so she keeps GETTING MORE. If she'd do one, enjoy the thing and then let it GO out of her place, it wouldn't be an issue.

We came to the conclusion that we'd do nothing. I HATE that her living conditions are not clean and safer for her, but I have given up trying to take anything out of the house.

You know what baffles me? She can call and order ANYTHING she wants from a catalog, but cannot remember my home phone number which has been the same for 44 years.

Now I have a friend who is begging me to come out to her home and help her 'de-junk' her bedroom. I guess it's pretty bad. But I declined and told her my friendship with her would end after one day of my brutal 'throw it out' mentality.

Hoarding is one of the worst things to deal with---esp if the person is simply not going to organize or 'help' in any way. They may want organization, or feel that somehow they are helping by taking in others' junk, but it's some form of OCD, I think that freezes them in place.

I wish you much better luck that I have ever had helping anyone with hoarding problems. Only my DH did the KonMari method about 5 years ago and HAS KEPT IT UP.

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The mystery is solved! Someone moving in gave her boxes because she was moving out! No, she’s not moving out but that was the plan. Ugh does this ever get easier?

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AT1234: Perhaps you can start small and end up with something accomplished, e.g. start by moving a few things at a time. Prayers sent.

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I personally know a hoarder. This is a tough situation because the person, dementia or no, is in a STRONG state of denial. In a weird way it is a fascinating disorder because it is so hard to understand why the most obvious of junk is of value to the hoarder (e.g., wrappers, shopping fliers, expired food items). Also, what seems like an absolute mess to us actually represents something of an organized system to the hoarder.

To me the key is to identify how more stuff is getting into her apartment. That might help to determine next steps. Whatever you might surreptitiously be able to stuff in a pocket, folder, purse on each visit might go unnoticed. What I would NOT do at this point is confront your mom, get into arguments, etc. This will go nowhere.

Curious if her caregivers have pointed out anything to you or the facility director. I agree with others that her living situation could pose a fire risk to everyone. Perhaps the director could bring in a staff counselor/mental health person to consult with your mom. This is a deep psychological disorder and is not going to be resolved by someone coming in and saying, "Clean up this place."

Keep us posted, please. This is a tough one.

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It's possible some of the boxes may be from packages she has received from friends and relatives. My mother is in secured memory care, and even before the pandemic, relatives have been sending her cookies, books, candy, socks, toiletries, clothes, etc. She receives several boxes per month, and when I was able to be there before the pandemic, she would not let me throw them away. She said she was saving the boxes to put her things in for when she moves out and goes back home. Some of the boxes still contained items she did not notice and did not unwrap, including homemade treats that were going bad. Good luck!

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Yes! I dropped off pkgs for my dad when he was in a LTC facility for rehab last spring. The facility held it in the lobby for 24hrs before delivering to his room.

You might open up a box there with mom to see what "surprises" someone sent. Then again, it might be best to do what ggcarnpj suggested and sneak a box/bag out at each visit. Never know what might be "growing" inside. 😜

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Move out one box per visit when she's not looking. Would she remember? In the end leave maybe 1 box n 1 bag n gently offer to go thru it together see what's useful that could maybe shared

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I might try that tomorrow!

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This doesn't make any sense to me at all, except that Brookdale is involved. Your mother is in a locked AL facility, so 'elopement' should not be an issue, right? Hoarding should not be an issue, either, since the staff should know PRECISELY where all these extra boxes and suitcases are coming from! They've been in a lockdown mode for quite some time now, with loved ones not allowed in........meaning, someone INSIDE the facility is allowing your mother access to these items or worse yet, BRINGING them TO her. So your mother is either lurking around looking for trash to lift and bring into her apartment, as a hoarder would do, or a staffer is helping her. In either event, the management is RESPONSIBLE for the condition of her apartment! She has dementia, which renders her incapable of making sound decisions.

If she's been able to order things online (?) or by phone with a credit card and that's how she's getting things, then the staff should STILL have raised the red flags when the hoard grew & alerted the ED to the problem. If she has credit/debit cards available, they have to be taken away from her now.

My mother also lives in a Memory Care AL but a privately owned one after I pulled both my folks out of Brookdale for too many reasons to mention here. One of the reasons was extremely poor management. They have a responsibility to ensure your mother's safety at all times. A hoarded apartment is NOT a safe environment for a demented elder who uses a walker to live in. They are aware of it too, since staff goes in and out of there daily.

I would lay it on the Executive Director's plate in no uncertain terms. WHY did s/he allow such conditions to take place in your mother's apartment? How and what does s/he intend to DO to fix this unlivable situation you're all now faced with? Let him or her give YOU some good answers here! This would infuriate me beyond words and I might even threaten the ED with removing my mother from the place or calling my lawyer, that's how angry I'd be.

Someone like the ED has to tell your mother that she is not allowed to have 'all that stuff' in her apartment, in simple language, and that it has to be removed. She will kick up a fuss, because that's what hoarders do. Everything they have has value to them, including garbage and paper wrappers. So you're going to face a tough situation now, thanks to the powers that be NOT having taken action and allowing this situation to exist in the first place.

Once your mother is told by the STAFF that her apt has to be cleaned out, then you can get that stuff out of there, even if she's crying and carrying on. It won't be easy, but her place will be safe once it's cleaned up.

Wishing you the best of luck dealing with a very difficult situation.

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My mom is not in Memory Care, she is in Assisted Living. She has dementia but is not incapable of many wild decisions even where she’s at now. Too many to list here.
The ED is not experienced and has zero LTHC experience at all. So short of saying something about a grandparent there is no training for geriatric at all. Yes, I am involved - heavily involved however I had not been allowed in my mothers apartment for months. The clutter and mess aren’t my primary concern her safety is. Thank you for your help I think that is wise advice.

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Is she diagnosed with dementia? If so, doesn't your POA become activated? You could come when she is at an activity or somewhere else and remove as much as you can at a time, then if caught, say it is for her health and safety - which it IS! My DH and I have done some of that with my mom; things just disappear, with an appropriate, truthful excuse (got wet from flood in upstairs apt - lots was removed because of that, both wet and dry LOL). The stuff has been in boxes for over 20 years - she hasn't missed it.

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There are no activities, they can come and go down halls to get mail but she is not out of her apt very often. That’s why this makes no sense.

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I just want to say how wonderful it is that you can finally see your Mom, and be with her. I cannot imagine how awful it has been for so many thousands of our loved ones who have been isolated from family for so long. And I can understand why she might be so attached to her belongings in her room...it's all she's had and probably brought some sense of security.
My Mom passed away 5 months ago. I miss her dearly. I am thankful you can spend time with yours now...enjoy it as much as possible, trying to overlook the mess. When she's gone, none of that will matter. I don't have any practical advice for the mess...just a smile that you can be with her and give her a hug.

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She is a hoarder and perhaps lazy or overwhelmed. She cannot under any circumstances be allowed to live like this and it is dangerous. If the landlord finds out, she may end up on the street. What you have to do is talk to her and explain to her this is NOT going to continue and no matter how she screams and rants and yells, YOU are going to empty boxes and put things where they belong - no if's, and's, or but's - AND DO IT. Are there people who could distract her or help you? I have friend who about 60 years ago moved from Pennsylvania to California into a small apartment. Her apartment is still covered in boxes she brought with her but has never opened or tossed. That is insanity and no one, no matter who, what, why, where should allow this. Just clean it up and ignore what she says because she will want to keep it all. BE REALLY TOUGH WITH HER. Perhaps she could stay with someone for "visit or vacation" while things get cleaned out. It must be done - now.

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Surprised AL facility would allow this level of hoarding. It could present a fire danger which puts all residents at risk. Would also be a danger to staff. Why does the administrator say they allowed it to get to this point. Do their contract terms address this?

Maybe some day when she has gone to a meal, you can load up stuff to open up pathways around the apartment.

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They aren’t doing dining room and haven’t for 10 months.

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Does the AL have a policy about hoarding? Maybe it can become a matter of cleaning up vs moving out. That might be too simplistic (probably is), but just a thought ...

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Do absolutely Nothing except to offer to clean up.

If she doesn't want you to then DON'T and don't spend your visits nagging her about it.
It's her Apartment, her life and you are still the child and NOT her parent.

So, please try to enjoy your visits and ignore the stuff around you.

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I do my concern is only fall risks, which is what put her here to begin with.

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Hoarding and piles of things can be dangerous, and make it difficult to clean the apartment. I'm surprised that the AL facility hasn't mentioned it to you. They are usually responsible for cleaning the apartments. Do you have POA for her financial affairs? Be sure that you have all of this paperwork in place: POA for medical and financial decisions, living will that has her medical directives, will (if she has assets), some banks and financial institutions have their own POA forms, and social security should have you on file as someone who can speak on her behalf. If you have POA, have all of her financial statements and bills sent to your address. What are the boxes and bags? Is this what she brought with her to AL and never unpacked? Or is it new? Can you put the suitcase high up on a shelf when she is not around? In my mother's facility, sometimes I'd get her settled for a meal in the dining room or when she was at an activity (this may be on hold during the pandemic) and then go back to her room to straighten up when she was not around. It bothered her when I did it when visiting her. She may want your visiting times to be happy times, not doing work in her apartment.

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Yes I am her POA and am in contact weekly with Palitive care nurse and staff at Brookdake.

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Please consider having your evaluated by a her doctor for dementia and a referral for a psychologist for hoarding - a form of obsessive compulsive disease. With a little medication, persistence to go through a couple of boxes every day, and patience - you can help your mom go through those boxes, put things away and help unneeded items along to others.

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Yes, she has dementia. With the lockdown Her decline is made much worse I see her at window visits until Jan 12. I’m a member of Texas caregivers for compromise and have tried to help Mary Nichols in changing lockdown visitation laws here. It’s been very difficult bc LTHC varies from county to county.

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First get her signature to approve you speaking with her drs & getting her medical recoreds and get a lawyer to get power of attorney! This is NOT too hard! Next get a friends to help you, go thru the house piece BY piece and havee piles for each category! 1st allow mom to show you where she can rmember bills,banks. accounts.....she will point to a pile or just tell u where or say I cannot remeber. Also gget account #s & see if there anre any life insurance records.

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She lives in a locked down Assisted Living facility. I monitor finances, there is nothing but her AL and meds spent out of it.

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You asked this question on Jan 13 and so far have not replied to anyone one here yet. First you need to give us more information so we can be helpful. Answer the questions others have posed here. Was she a hoarder before she moved to AL?
You need to be concerned about her health and safety. Yes you may get pushback from her on moving things but so what? You do what you have to do.

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Yes, she was.

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What spurred this cleaning frenzy?

Is mom moving? Or just needs to have this done?

I'm going to use the awful "h" word: Hoarder.

My mom also has a small apt jam packed with junk. It accumulated slowly over the years (24) and despite my best efforts, I was asked to quit 'cleaning' for her. She phrased it as 'stop touching my things' but she doesn't see well enough to see that my 'touching her things' is cleaning and dusting.

Even with a walker, mother could actually bring in MUCH more stuff than when she was walking with a cane. Plus there is the almost daily deliveries from Amazon, USPS and UPS. Don't discount how quickly boxes will pile up. And mom often doesn't remember ordering anything, so she either never opens the box, or opens it and decides to return an item and can't figure out how. I think most of the boxes she has out in her place are, in fact, empty.

The most important thing in helping a hoarder is to have very LOW expectations as to what you might acheive. Everything she sees is going to trigger memories and perhaps a long discussion as to why she won't give away/ throw away stuff.

I tried, I got OS involved and we tried together and every single time we tried to simply clean a pathway for her to walk, she'd get so upset.

Now, no one does anything for her, other than make sure her bathroom garbage goes out once a week (think a week of sopping wet Depends---but they CANNOT go to the trash until Sat.)

YB checks on her, gets her weekly groceries and once in a great while will force her to cut back on clutter than blocks doors.

I wish you much better luck than we had. A person is certainly entitled to own as much stuff as they want, I guess, but at the risk of making your home a hazard? We had to accept that mother does not want help at all.

Good Luck. I'd sure like to see a 'good' hoarder cleanout story.

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Has she been ordering on line? I would ask the director if she is having pkgs delivered all the time. Do you have access to her Credit Card Statements? Her bank statements if she has a debit card? If you find this is what is happening, you may be able to return the items.

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That was exactly what I thought, I have everything (that I know of) going thru one joint account. I think she’s got a credit card from sister. That’s the only thing I can think of. Every year her church tries to contact her for money. The office has asked me to please get them to stop hounding them but so far I’ve been unsuccessful. They may have brought boxes and suitcase, I don’t know. Everything has to be brought to the front and left they can not come in.

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How long has your mom been there?

Did she unpack when she moved in?

Who supplied the boxes, if she was unpacked when she moved in?

Maybe some more info would help.

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She’s been there three years and has never unpacked herself, i unpacked her. There have been many move in and out due to COVID and I have no idea where boxes or rolling suitcase came from. All I know is she doesn’t want me touching her things.

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Where did the papers, boxes and bags come from, are they not your mother's things? And if she won't let you move anything how do you expect the cleaning staff should handle this?

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I don’t! That’s the problem, i know they can’t, and I have no idea where the boxes themselves would have come from. I was there again Saturday she wanted to talk about where she wanted to be buried, so that’s what we did. My mothers hoarding is combined with elopement so that’s what caused concern.

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Essential caregiver. Is this something anyone else has experienced?

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