Am I killing my mom?
March 19, 2016 8:18 PM   Subscribe

Mom has early dementia. Dad just had a stroke. I'm being the tough guy and intervening on her book hoarding. Now doubting myself... help!

So my mom has been on a slow and steady decline cognitively for several years. Her last assessment from a neuro/NP was 2 years ago, at which point she was still just diagnosed with "mild cognitive impairment". Since then, her short term recall has worsened dramatically. She asks every question half a dozen times, often immediately in a row. ("When are you going back home? When are you going back home? When are you leaving? How long are you here? How long will you be with us, etc.) I've already scheduled her for a new assessment on Wednesday.

The other challenge is that her world has gotten very small. Most of her life is sitting on the couch reading her spam email and making (thankfully small) donations to liberal causes, and also buying used books. She sometimes orders a couple books a day, definitely several a week. Meanwhile, she still has a volunteer gig helping at the local library book store. While it's awesome for her to get out of the house and contribute to the world, most of what she actually does there is pile up books and takes home two or more grocery bags of books every time she goes (twice a week).

In a couple years, my mom has probably quintupled my parents' already large library. It's especially painful to watch my dad's carefully curated over 70+ years collection of fine literature muddied with a lot of crap anthologies and quote books, but snobbery aside, the books have become a safety hazard. My mom's room was filled with piles of books so it smelled bad in there and she had only a narrow path to her bed.

All this was depressing to me, but it seemed to bring meaning to my mom's life, and she got very angry when we talked about cutting down, so it continued like this until this week, when my dad had a stroke.

In the name of making her bedroom safe for him (he usually sleeps upstairs and I thought he'd be going straight home from the hospital and would need to move into her bed) I insisted on removing books from the bedroom. Unprompted, an occupational therapist at the hospital specifically asked about piles etc and told my parents the book piles have to go.

So I've spent a bunch of hours this week packing books. I've already removed over 30 bankers boxes from her room (and left several hundred books in there since they don't pose a safety hazard.)

In the meantime, my dad ended up in a rehab for a week and is recovering really fast. He's walking and talking really well and probably won't actually need to sleep downstairs.

Despite that, I started to work on the living room tonight, with the goal of just shortening any piles that actually cover windows and removing the books that are starting to spread out across the floor into the room. And suddenly my mom, who had been somewhat sad about my removing the books, got really, really sad. She just sat there in a chair watching me, looking terrible. I stopped to talk to her, but nothing I say sticks. So she says stuff like, "I'd like to list what's in each box" and I say, "there are already more than 30 boxes. It would take weeks to list each book" and then she is quiet for a while and then says, "If you're going to do this, I want to make a list of what's in each box".

I know this is a ridiculously long question already. What I'm getting at here is, my mom has little that gives her a sense of meaning and purpose anymore. The books do that. On the other hand, there are thousands of books piled almost to the ceiling. If one of them has a fall, it's going to be really rough for everyone. I am suddenly my mom's primary care taker and although I'm optimistic that my dad will be back in action soon, I'm realizing things can happen quickly and I really don't want one of them to fall and break a bone.

So.... I guess this is like, what is the most humane thing here for my mom? I'm worried about sending her into a depression. The books are the first issue, but the next will be her drivers license, as her appt Wed will likely show true dementia which is a mandatory report to the DMV.

I wish I could get my mom into activities that I view as positive and healthy (water aerobics! Gardening!) but I haven't been able to figure out how to make these things happen. Again, I know this question is sort of open ended but what I'm trying to get at is, how do I support my mom's mental health and personal autonomy, while being real about health and safety hazards and stepping in when I need to?

posted by latkes to Human Relations (36 answers total) 4 users marked this as a favorite
Response by poster: (Parents are in Sacramento, CA. I live 1.5 hrs away [without traffic] in Bay Area, if that matters.)
posted by latkes at 8:22 PM on March 19, 2016

It sounds like you're one the right track with the assessment, and I think you already know that you have to step in and intervene when it comes to safety issues, no matter how painful it may be to do so. The fact that she's still driving seems particularly alarming given the memory issues you've described; you have a responsibility not just to her, but to everyone on the road to ensure she isn't driving if it is unsafe for her to do so.

I'd encourage you to seek out the dementia support services available in the community. I can't give specific recommendations for Sacramento, but there are social services programs and adult day centers that can help support you and her and try to give her activities that are as stimulating as possible but appropriate for her cognitive state. A social worker at the hospital may be able to refer you to local programs as well.
posted by zachlipton at 8:29 PM on March 19, 2016 [2 favorites]

I'm sorry you have to deal with this.

Hoarding is difficult to manage, and it can be difficult to know when to intervene. But if it's a safety hazard, it's safe to say it's time to take action. And, I'm sorry to say this, but hoarding is usually already a symptom of depression.

There are hoarding help lines out there - I would suggest calling them and get suggestions. Her doctor may also be able to suggest resources.
posted by dinty_moore at 8:30 PM on March 19, 2016 [1 favorite]

Is there any way your mom would be able to accept a books in, books out policy to keep things in check after this initial clean out? Like maybe when you visit every few weeks or however often, you clear away some of the older books and tell her you're going to take them back home and donate them (to senior centers, prisons, schools, wherever is appropriate and that she'd be happy with). Obviously you can skim the best from whatever you take away and get rid of the rest, but perhaps this would help her accent and get some meaning from what is a necessary cleaning up/safety effort?
posted by MadamM at 8:30 PM on March 19, 2016 [1 favorite]

To deal with the small problem of her wanting to having a list, take a cell phone photo of each cover, or better yet, download a bar code scanner app and scan in all the books to a list.
posted by k8t at 8:42 PM on March 19, 2016 [19 favorites]

If lists would cheer her up, you could use an app like Goodreads to scan the barcodes on books as you box them. You could generate shelves: Box 1, Box 2, etc. This might also be helpful if you do decide to store some of them, as stoneweaver suggests above. Librarything is another app that might serve the purpose.

I was once hired to clean out the home of a man who had hoarded books as dementia set in and there were a lot of duplicates and triplicates in his collection. Another advantage of using an app to sort the collection is that it would make it easier to identify these and weed them out first.
posted by bibliotropic at 8:42 PM on March 19, 2016 [14 favorites]

If she has dementia, give her just a random list of books curated from the Internet, like top 100 novels from each genre.
She won't know the difference.
Part of caretaking for people with dementia is getting creative.
posted by AlexiaSky at 9:04 PM on March 19, 2016 [18 favorites]

Take a picture of what's in the book with your phone and mark the box with a number and mark the photo with a number. If possible.
posted by discopolo at 9:07 PM on March 19, 2016 [2 favorites]

I feel like a bad person even suggesting this, but -- if you get rid of piles when she's not watching, does she notice? For some people with dementia that's very disorienting and you definitely shouldn't do it, but for others, it's the action of bringing home the books (/other hoardable object) that's important and they don't actually have any idea how much they have or what they have once it's in the house, and if they don't see you remove it they don't notice it's gone. Possibly you can just keep shuffling them out a pile or two at a time when she's taking a nap.
posted by Eyebrows McGee at 9:40 PM on March 19, 2016 [22 favorites]

If you really do need to generate lists for her peace of mind, this might be the kind of thing you could pay someone $15/hr to do. For under $300, you could probably have all your boxes inventoried.
posted by salvia at 10:12 PM on March 19, 2016 [4 favorites]

Since she's going to forget she asked you and is going to ask you again in a short while, the next time she says "I'd like to list what's in each box", say, "Okay, thats a good idea!" Then continue with what you were doing, and when she asks again, in five minutes, give her the same answer. That way, she's happy, which is what your concern is.
posted by MexicanYenta at 10:43 PM on March 19, 2016 [14 favorites]

I'm sorry if I failed to read carefully and missed this but is it possible bookshelves?

The question kind of made it sound like cruddy fiction but that can be very comforting sometimes, to have around, especially if ones brain isn't up for a heavier lift.
posted by A Terrible Llama at 10:58 PM on March 19, 2016 [5 favorites]

You are doing the right thing, which is the best that you can. I think you need to phone a friend (or hire someone- perhaps someone from the library? ) Find a way to have her out of the house while you do it. Then full force take no prisoners get it down to where both parents can move freely. If she asks where they went- tell her that the library needed them back.

What you describe is a huge safety hazard- I'm sure you already know this. And you are being the good guy by fixing it, not a bad person. Figure out which are her favorites and make sure they are close and accessible.
posted by LuckyMonkey21 at 11:18 PM on March 19, 2016 [1 favorite]

Talk to someone either at the hospital or rehab about getting in touch with a social worker. You have two elderly parents with varying medical issues. It doesn't mean you're handing over any power or anything, but you need someone who can answer these questions and it's something that is super easy to hook up.
posted by rhizome at 11:18 PM on March 19, 2016 [1 favorite]

You could keep reassuring her, "Mom, these books won't be gone forever. We're just putting some in storage, so you guys have more room here." Keep saying that, as many times as she needs to hear it. Invite her to take part in selecting which books need to stay and which books should go into storage. Pay attention to the books she seems really passionate about, and save those.

If you can store a bunch of books somewhere, do that. If you can't, and they have to be given away, tell your poor mom they're in storage anyway. Tell her they're at the big storage place, downtown. Safe and sound. Let your mom cling to some happy delusions. Tell her good, loving lies.
posted by Ursula Hitler at 11:26 PM on March 19, 2016 [3 favorites]

"If you're going to do this, I want to make a list of what's in each box".

This breaks my heart a little bit. I mean - your mother may have early dementia, but she's asking you to do a clear, actionable step and not disagreeing with your removal of her books.

I've done this before (minus the photo album part), and it's been remarkably effective in letting me let go of physical objects that no longer made sense to store:

Take photographs of the books you're removing, a dozen or so at a time. Print each photograph out, and put it in a physical photo album, so that she still "has" the books. She can mentally keep onto the books she has, without any of the space/storage/hazard problems.
posted by suedehead at 12:00 AM on March 20, 2016 [22 favorites]

Is it possible for your mom to do some of the listing, on at least one of the boxes? Maybe it will help if she's engaged in the process, rather than being someone to whom something that feels unpleasant is happening.

Agree on the taking pucs-making an album suggestion above. We did this with a family member who couldn't get rid of things such as old toothbrushes. Worked very well after initial resistance.
posted by Nancy_LockIsLit_Palmer at 3:34 AM on March 20, 2016 [2 favorites]

Yes, I was going to suggest taking pictures of the books in groups Maybe if you have a pile with the spines all facing out, it would be super quick to photo even 20-30 at a time. You could do that as you pack, and decide later whether to worry about transcribing into a list. Scanning barcodes for Goodreads is a good idea, but it sounds incredibly time consuming for that quantity of books. Are you stacking the books flat in the box, or spine up? I assume the former, but if it's the latter, could you just open the already packed boxes and take a quick picture of the contents?

I am a bit of a hoarder (or more accurately anxiety-prone declutterer), and I frequently snap photos of boxes that I pack up to go out to the garage from our smallish house. And store them in Google Keep, with the thought that someday I will be able to find the "box with children's books gifted from grandparents at their birth" or "pool and sprinkler toys for next summer" when I really really need it.

Also, it sounds like in this case the issue is that she is collecting physical books more than reading them, but could her library friends hook her up with an Overdrive account on a tablet? Would having thousands of books at her fingertips help manage her anxiety of losing access to physical books? If so, for me it would totally be worth buying her an inexpensive tablet or even an iPad mini, just to get her through this stressful experience. (Bonus: you can then FaceTime with your folks when you can't visit as often as you'd like.) If you do get her a tablet of some kind, maybe lock it down to avoid online shopping. New paper books from Amazon wouldn't be an improvement over free library sale books.
posted by instamatic at 5:13 AM on March 20, 2016 [1 favorite]

Is there a reason you're not listing the books you pack away? I mean, how are you even sorting these books? Are you putting them in storage or just throwing them away?

I used to have a library of several thousand books, a lot of them fiction trades. The only reason they weren't piles was because we had sixteen bookshelves. When we moved across country, I had to pare down and it was heartbreaking and sad. I did it myself though, so it was okay if hard, but somewhere in it all, we misplaced one box of books-to-keep and put it on the curb instead.

That box still haunts me. I moved two years ago and still think about that box and wonder what was in it and what books I am Missing.

To do what you are doing without cataloging would literally drive me into a spiraling depression. Especially if I had memory problems.

Buy a barcode scanner and sort them all into an Internet list, then tag all the books scanned as wherever they have gone.
posted by corb at 6:22 AM on March 20, 2016 [5 favorites]

Can you reframe her hobby as, "Wow, it's so awesome that you're getting all these books at such great prices; the [place to donate books for a cause she cares about] will be thrilled! Can you keep your eyes open for middle grade chapter books? The schools has been asking for them." I know it probably won't work because she seems to actually want these books for herself, but if some of her collecting can be diverted into books she explicitly intends to give away, that might reduce what comes in and doesn't go out.
posted by metasarah at 6:23 AM on March 20, 2016 [2 favorites]

I would definitely look into a hiring someone to go through and create an inventory of all the books already packed away. I get that you may not have the time or energy to do it, but it seems like a relatively reasonable request, and if it would make her more comfortable with this process, then it may very well be worth spending some money on this. I also agree with trying to get a storage unit to keep them, at least for the time being.

As a bonus, having an inventory may ultimately make it easier to donate/sell/give away the books later on down the line.
posted by litera scripta manet at 8:29 AM on March 20, 2016 [1 favorite]

Response by poster: Hi guys, thanks for the advice. I dowloaded Goodreads to scan books, but just to be clear, I think the listing books thing is a bit of a red herring. I was giving that as an example, but she alternately perseverates on wanting to choose each book to pack herself. This is not a realistic plan as when we started this earlier in the week, she literally packed 3/4 of 1 box, and listed each author in her shaky hand on a post it, in the time I packed about 15 boxes. She wandered off to do other housework mid-task and can't remember why we are packing the books in the first place.

I am not particularly sorting boxes, although I did label about 6 or 7 boxes of all mysteries. As mentioned by someone here, there are many duplicates and triplicates. She doesn't have any particular favorites. She can and does definitely still read, but she doesn't retain. I'm not sure that she's actually finishing books anymore as when I watch her read she seems to loose focus quite quickly. For the newspaper, she reads aloud the same headline 3 times in a row.

In terms of just keeping the books, I have definitely wondered if I should do that, which I guess is why I'm asking this, but I do think that the least harm solution is at least reducing. At one point a year ago my dad did buy her 3 new bookcases which she promptly filled and are now two or three books deep, plus towering stacks on top, plus now stacks in front of each shelf that reach the hight of the shelf.

I actually think I'm leaning toward Eyebrows' suggestion most. I think it's probably the least painful for my mom if I just sneak books out. So maybe now that the bedroom is safe I'll just sneak out a box at a time, skimmed off the taller stacks, until the living room is a bit more contained, then leave it as is.

I have forbidden her from procuring any more books, and keep reminding her that the hospital said so, and she seems on board. I wish I could wean her onto Kindle but she is most interested in the physical books.

My worry is that by stopping the book collecting, I am taking her main meaning in life. I'm not sure there's an easy answer for that.

FYI on the social work front: I am on it. Our appt Wed will be with the NP and a social worker, it's part of the Kaiser memory clinic she goes to. I actually work in medical case management and have lots of people to go to for advice and ideas. And I did reach out to a social worker when my dad was inpatient. In my experience, I have not found the medical social workers to be especially helpful, but I will focus on specific local resources when I meet them Wednesday.

Thanks all.
posted by latkes at 9:10 AM on March 20, 2016 [4 favorites]

Is it possible for you to find another activity she'd enjoy? Would she at all enjoy gardening?
posted by amtho at 9:41 AM on March 20, 2016 [1 favorite]

When my grandmother's dementia had gotten bad, she still read her magazines, but tended to find actual current events a bit overwhelming. So, we scrounged up a few 10-15 year old issues of her favorite magazines, and occasionally she'd ask "has this week's TIME come in yet?" and mom would say, "Oh, have you read that one? Try this one," and hand her one of the 5 other TIMEs, which she would greet as brand new.

I say this to suggest that one day (not yet, from the sound of it) the entire collection of books can be boxes stored at your house, and every time you come you bring her a new box and take away an old box back to storage, so that she's always got new books. And the total number of boxes involved could invisibly shrink to about 5-10, rather than her current 50-60(+?).
posted by aimedwander at 10:26 AM on March 20, 2016 [2 favorites]

I think you have a really good handle on this. I've worked with a lot of folks with dementia and I agree that the listing thing is a red herring. I think your mom realizes that by taking away the books you are taking away one of the last means of control in her life.
Use the hospital as a scapegoat. Remind her that it was the hospital that forbid piles of books, not you.
posted by pintapicasso at 11:22 AM on March 20, 2016 [1 favorite]

When we were wrestling with my Mom's early stages of dementia, we consulted with Kira Reginato, who is an expert on these issues. She can offer you resources, ideas, etc. Her consulting fee is reasonable and I have recommended her to a couple of folks at work and friends who have also found her help valuable. She's in Petaluma but will consult over the phone.
posted by agatha_magatha at 12:30 PM on March 20, 2016 [1 favorite]

I'm late to the party here but since I can still comment I thought I'd mention one thing that worked well with my mother was to find whatever way I could for her to still feel helpful in some way. That list got smaller as time went on, after a while I couldn't let her iron clothes anymore for example, but I would still do things like take her shopping so she could help me pick clothes. I think even asking "Mom, which necktie do you like better?" or "Do you like this shirt or this other one?" helped her feel useful and that, in turn, seemed to help her feel that her life still had value despite being increasingly unable to care for herself.
posted by LastOfHisKind at 1:20 PM on March 20, 2016 [5 favorites]

One suggestion:

but just to be clear, I think the listing books thing is a bit of a red herring. I was giving that as an example, but she alternately perseverates on wanting to choose each book to pack herself. ... As mentioned by someone here, there are many duplicates and triplicates. She doesn't have any particular favorites. She can and does definitely still read, but she doesn't retain. I'm not sure that she's actually finishing books anymore

For you, it sounds like books are meant to be read, so you consider the books are meaningless because she's not reading them.

For her, it might be that, books signify a mental/emotional safety blanket of sorts. I'm projecting a bit, but books may connect her to memory, to safety, to stability, and might be more important this stage in her life to have books around, than to necessarily read them.

As a result, I think having an excel sheet / goodreader archive is less important than having a visual set of photos that she can physically flip through. The point is not to know what books she's missing, but the point is to give her the visual, emotional sentiment of being with her books.

It sounds like you're dealing with something incredibly difficult. Good luck.
posted by suedehead at 2:29 PM on March 20, 2016 [4 favorites]

It sounds like part of the reason it's hard for her to let go of the books is that they are so much a part of her life. She likes the time online shopping for books, she likes buying books and having books. As a book lover, I know that most of us want actual hard copies of books, but I'm wondering if for your mom, a kindle might help. She could shop for books there, buy e-books, check out e-books and e-magazines from the library and even download lots of books for free.

Also, since she does volunteer work at the library, donating books there might be more amenable to her. At the very least and in-out policy for the library books she brings home makes sense. She brings a grocery bag of library books home, when she goes back she takes one (or two) with her to donate to the sale. This way you're slowing down the acquisition without making big life changes that might leave a hole in her life. You could also keep a list of the books that go to the library.

The Sac library is a good place for her to be involved in (I live in Sac) and though something like gardening might be preferable, books are her thing - if you can set up ways to manage the books it will keep her enjoying her life.

You sound like a good son and I wish you the best with the dementia assessment.
posted by mulcahy at 2:47 PM on March 20, 2016

Another option - could you pack up the books, put them in storage, and then bring them back one box at a time for her to catalogue. Yes, it'll take forever, but it'll be a way of spending time with her books that will not involve getting anymore of them.
posted by kjs4 at 3:14 PM on March 20, 2016 [3 favorites]

How much of a dent would it put into the library to get rid of just the duplicates? Are the current bookshelves 7-8ft tall, or the smaller three- or four-shelf ones?
posted by rhizome at 3:59 PM on March 20, 2016

get a nice big bookshelf for her. fill it up except for one shelf. every time you visit clear out that shelf. i bet she won't notice or at least won't tell you she notices if she still gets to buy books...
posted by at 4:47 PM on March 20, 2016

On second thought also, have you thought about gifting her a Kindle and a subscription to Kindle Unlimited?
posted by corb at 4:58 PM on March 20, 2016

Would it be possible to channel that love of books into a Little Free Library in her front yard? If she's still mentally okay enough to get the concept, it could be a fun hobby that would satisfy her need to physically touch and collect books.
posted by naomi at 7:59 PM on March 20, 2016 [5 favorites]

I think you're absolutely doing the right thing, understand that it's sad, but it sounds like she's not going to remember what you're doing past the part where she's visualizing you do it. Can you get her out of the house while you do it a little bit at a time, maybe to the senior center in town or out for a walk in the park/shopping with a friend/family member?

Don't store the books. Why bother? She doesn't know these were her books. You can let her catalogue books if that's fun to her, but there's no reason to keep them around.

I'd probably try to come up with a system that, once you remove the book piles on the floor, or even as you're in the process of doing so, allows her to have a rotating supply of books. It seems like as long as she keeps seeing new books coming in, and doesn't see old books going out, she'll be copacetic. Maybe taking her to the library once a week and letting her take out a big bag of books, and making sure you gather them up (again, not while she's watching you do so!) and return them on time? Maybe letting her get a bag of books from the bookstore every week (if the library doesn't meet standards) - and this would have the added benefit that you could return a bag of books weekly, on the down low, that are different books? That would make it easier on you to do the sneaking books out part.

Point being, I'm in absolute agreement with the strategy that you don't need to tell the truth as long as you're telling her what she needs to hear. In fact, I'm pretty sure that strategy comes from the book The 36 Hour Day, which I hear is great for family members of people with dementia, and I would recommend as a read for you. Sorry you're going through this, and good luck.
posted by treehorn+bunny at 1:46 AM on March 21, 2016

Can you tell the library what's going on? Then they can tell her they don't have any books to give away that week.
posted by thebrokenmuse at 2:26 AM on March 23, 2016

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