Dementia and Hoarding

The A&E cable channel has a very good show called Hoarders on Monday nights at 9 PM Central (10 PM EST). I suggest you try to catch a few episodes of it. You can watch full episodes here:

http://www.aetv.com/hoarders/video/

It's clear in watching it that the people they profile are hoarding things that are much more than "stuff" to them. The stuff represents memories, connections, love -- all the things they can't seem to get from people around them. It's like they've lost their connection to other people and connect to the stuff instead. Several of the people they've profiled clearly have pretty severe mental issues that limit their ability to understand the extent of the damage their hoarding is doing to themselves and their families.

One woman had something like three tons of used adult diapers sitting in her house. She only asked for help when she fell off the potty chair she slept on at night (the only open space she had) and couldn't get up. They had to condemn her house once they removed all of the garbage. It's really, really sad to see the shape some of these folks are in. And their families have tried over the years to help. But it's a mental illness and needs the help of professionals.

In each show they always have both a psychologist to deal with the emotions in getting rid of their stuff and an organizer that can help the clean-up crews and the families go through the stuff and organize the remaining stuff. I'd suggest you watch a few of the episodes and try to find some outside help (psychologist and organizer) to help you through. Best of luck to you...I know it's not easy. But you definitely need some folks who specialize in hoarding. It's more than most people could deal with.

My father has mixed dementia and a lifelong problem with hoarding. While he was married to my mother and step-mother the hoarding was contained because they kept control of the house, except for one room he filled with stuff. After my step-mother died three years ago, and we discovered his dementia diagnosis, my siblings and I stepped in to care for him. It seems to me that the hoarding got worse with the dementia - cognitively he was less able to organize information and objects, he seemed to need everything to be out and visible or he would forget he had it and would buy more, and he definitely hoarded in order to defend against feelings of loss. We were able to move him to assisted living recently and this required a major downsizing of stuff. He hated it but went along. Now, when he gets angry about it I try to remember that at least he is safe - not eating rotten food, leaving dog feces on floor or tripping over piles of paper. We could not address every issue in a way that would make him happy, and I realized our job was to keep him safe and provide care, and that is what we have done. Painful, I know.

We also have power of attorney for finances, legal issues and medical care. We have been able to restrict his access to money to reduce his manic buying, and the assisted living facility is password secured, and since he cannot remember the password he cannot come and go and bring home junk.

Judithmft, my heart goes out to you as you deal with all of these issues. I have firsthand knowledge of the hoarding dilemma. My mother-in-law had a serious problem with hoarding. I can remember the family sitting in her living room many years before she died and discussing who would end up cleaning up her mess. I knew even then that it would be me and, unfortunately, I was right. Hindsight is 20/20 so, if I had it to do over, I would hire one of the services who cleans out the house and markets it. Instead, I did it myself. Big mistake. It took me a whole summer. I would work my full time job, then go home to change clothes and fix dinner for my family, then off to MIL's to clean and sort. The town where she lived would bring a dump truck on Friday and leave it over the weekend. I used our limit on the truck, then piled the rest at the curb for pickup. In all, we had about 7 dump trucks full of trash. Then, it took 2 moving vans to transport the rest to our house. She had junk mail and magazines more than 20 years old - bagged and tagged in the basement, every plastic shopping bag she'd brought home through the years, every broken appliance, empty jar - if it came in to her house, it stayed. When we moved her to assisted living, the only thing she wanted out of her house were some of her pictures and her television. She seemed relieved to let it all go when the time came. It had been a heavy burden to her and she couldn't deal with it and wouldn't let us help her until there was simply no choice.

Thanks to all of you for your replies - its so helpful to know we're not the only ones dealing with this! Redhatprincess, your story is exactly where I am now and I did it 10 years ago too when we bought the house we live in now from her, I empathize with how exhausting it is! We did go to her neurologist on Thursday (the one that treats her for the dementia) and he told us in no uncertain terms that the time had come for us to take matters into our own hands and move her in with us and clean out the stuff. In some ways this is a relief as it gives us permission to deal with the problem...I almost think she is relieved as well as she has some awareness that the dementia is making things too difficult for her to manage on her own. Judithmft, I think hearing the doctor say that our job is to keep her safe helped me too - its so hard when they are your parents or in laws and you're not used to telling them what to do but the doctor really put it in perspective for us. Thanks again everyone for the support!

One thought I have as I remember going through this nightmare is that, as our loved ones become more and more childlike from the dementia, we have to respond to where they are. When my son was little, if I had done only what he wanted, he would never have bathed and would have eaten only ice cream, pop tarts and chocolate, with an occasional hot dog thrown in. My MIL became so childlike and dependent. It took a while for me to learn that I had to do what she "needed" and that wasn't necessarily always what she "wanted." I'm so glad you are getting the support you need.

The stories above touched me, since I also caregive a Hoarder. My Mum, 85 in April, has been this way all of my life, and it has puzzled me to no end. Due to circumstances, she moved, and when she did, the crew that helped, boxed everything and put it in one room of the new place. She was ill at the time, and in and out of hospital and nursing. With her out of the way, I stepped in and sorted and tossed for weeks. I got the mess down to a reasonable condition, although, as soon as she got home, she started again. I spoke to her, in bits and pieces, since she has dementia, and has a short attention span, and she understands, somewhat, that she has "issues". This has helped some, and at least now, she hands me over the junk mail when I am around. I still sort the cabinets and toss on a weekly basis, and it will be oncoming, I am sure. Yet, due to the overhaul, last spring, the future view is not as ominous as I once saw it. My suggestion, if I have one, is to find anytime the person is away from the home, and start in inconspious areas; closets, cabinets, whereever things wont be instantly missed. I did not tell Mum how much I tossed and really all I heard from her when she started living at home again was how much she appreciated me sorting out her stuff. Anywho...Best of the Best to You.... PS- I have a standing policy with myself- If I have not used an item in over a year, it must be given to a new home!! Keeps the mess down and sure beats seeing it all pile up and look as though I am a "Hoarder"...lol

Isn't it interesting how caring for a hoarder changes us? I have always tended toward minimalism but, after my experience with my MIL, I am militant about keeping clutter down. If I shop and buy new clothes, I have to put an item in the Goodwill bag for every new item I buy. And, like you said, if I haven't used it in a year, it's gone. I picked up a phrase from some show that helps. Do I love it, need it or does it have strong sentimental value? If not, I give it away. I certainly don't want my children to have to do for me what I have done for my MIL. I love them too much.

That's It, isn't it? I dont want my son faced with the mess some day... Been updating all my files, getting my "affairs" in order, who wants what, what goes where... Who needs to have to go through the messes WE make, to any extent? I bought an RV to live in, when I knew I was needed to care for Mum, so the clothing issue pretty much takes care of itself...lol I do have a small storage building, for those keepsake things, and that is on the list of things to clear out as the spring weather holds. Books, music and photos, are the tough ones. Music is being put on computer, in an external harddrive, so soon the CDs will head off to new homes. Photos are already digital, with just a few older ones to scan in. Books? Well...lol... Anyone recall the movie, with Lucy and Desi? with the trailer...where she keeps collecting rocks???? That might be my RV story..unless I can keep finding ways to downsize. Seems each time I give a book or two away, I find freebies again.. (I don't own or watch TV, so I read, or watch DVDs on my laptop) All Be Well....

I know this blog started over a year ago so I don't know if anyone will respond. We moved my Father-in-law and his wife close to us at Thanksgiving and bought them a 1600 sq ft mobile home in a senior center to live in. I always knew that the MIL was a "collector" but in 4 months the home is a disaster. My FIL has Alzheimer's and it is getting worse. My MIL has decided she hates where she is living, doesn't think I have done anything to help her and absolutely refuses to see the danger she has put both of them in regarding her "stuff". I can't seem to do anything right or enough but she has junk everywhere and piled high. I am afraid if she moves him again he will just shut down.

I'm so sorry to hear about your situation. I wonder if there are some local agencies (Area Agencies on Aging in the phone book) who could help you find resources to deal with your MIL.

She's probably feeling pretty lonely and by herself, if her husband has Alzheimers and she's in a totally new location where she doesn't know anyone. I wonder if you could help her connect with other wives in her situation? Support groups through the hospital or senior centers and their activities? If she can start to connect to more people, maybe she won't want to connect as much to the "stuff".

Older folks find change more difficult and when you throw in a husband with ALZ and a new location where you've left your old friends and routine behind, I can see why she's stressed, which then becomes YOUR problem.

We're here to listen, so feel free to vent when you need to. Good luck!

I just had a long talk with her. She is definitely moving back to her past home in Carson City. She says she is getting rid of a lot of stuff before she goes. I hope this is a good move for both of them. She says I hurt her feelings and that she is definitely not a hoarder.

So how do you feel about her decision? Can you provide her with any help for your FIL when she moves back to her previous home? She's probably feeling overwhelmed with so many things going on in her life.

Having moved my mother out of her home of 49+ years to a Sr. Assisted Living facility, I know the results of a move. She was angry at me for 6-9 months and of course, her mind deteriorated over that time. Dementia sufferers need stability, constant "sameness" in their life and schedule. BUT having said this, you must do what you must do and obviously a move is a must. Just be prepared for some mental break down....not emotional so much but just the confusion that goes along with changing their life. I continuously told my mom that I knew she was experiencing a major change in her life and for that I was sorry but I needed to move her closer to me and now she's in a much safer environment.
As for the hoarding, that is another difficult situation and I don't have any advice for that other than to try to move with her the things that are the most important to her. Her "security blanket" items.... My prayers and hugs will be with you. Please feel NO GUILT in doing this for her. You have to become the take charge parent and that is so difficult to do that to them but it must be done.

I know I am late replying but the first post suggesting you watch "Hoarders" is a godsend. I started watching it and not only love it - it has opened MY eyes to MY tendancies to hold on. Mom has dementia and dad was her full time care giver until my son & I moved in. It was a move that had to be done quick so mom could get discharged to home. Mom & Dad grew up in the depression and yeah yeah I know - we hear this all the time...but NOTHING got thrown out- everything has a 2nd use. I was raised this way so that's what I chalked it up to This show opened my eyes to dig deeper.....mom is so far gone she has no idea whats going on now. My dad on the other hand - OMG - the plastic bags the groceries come in......he has BAGS & BAGS of them....the boxes the diaper wipes come in - there are 3 empty ones in his room - his reply - they can be used for something......

If your mom does not want to deal with "decluttering" what I have found is do bits & pieces at a time so it's not a SHOCK. But don't be mad, hoarding is in fact a mental illness and needs to be dealt with as such. To you it's junk to them it's THEIR LIFE.

Hope since your original post, things have smoothed out for you!!! Kathy

I FULLY understand about what you said about "my tendencies"... I too (after watching Hoarders on TV) have begun going through my stuff.... Way too much. I also was raised in "you'll be able to use that for something so don't throw it out yet." Well, at some point you have to throw it out just to be able to open closets. HA.... Yes, that TV show is excellent for showing us what can happen if we don't take charge - even of our own lives.

Another show that is very good is "Enough Already" with Peter Walsh. It is on OWN Monday nights at 8:00 in our area. He really gets to the cause of the hoarding. While I don't have the tendency, it has really helped me to understand my MIL and why she became a hoarder. She suffered from obsessive compulsive disorder, had several major traumatic experiences in her life and hoarding was her way of coping with it.

I am a semi hoarder. My Mother raised with a Mother and sister moving from place to place wherever she could work in Canada had nothing but My Mother married in the depression never wanted to have any clutter. Before she married, She,her Mother and a good friend (Her Sister was married) would take turns carrying a piece of clothes or whatever downtown trying to sell it cheaply. A nickle or a dime. After Marrying she wanted an uncluttered home and always gave excess items away.In my teen years I kept a trunk full of mementos which she never touched. After marrying and having 3 kids a neighbor taught me about garage sales. I eventually went into a thrift shop and raised my 3 children, bought a home and a car. Junk was good to us. Now, in my late 60's with a small SS income I keep everyting and value it a 50cents, a dollar or more. I don't collect in the same way a hoarder does. I toss trash but "stuff" especially books are piled in my rooms and garage. I put stuff out for a garage sale and put half back in the garage before it starts. I can't seem to let it go. When I have a sale I make enough to pay an extra bill or more so just can't give it away. I sold on ebay for a few years but rarely now. I guess I am a hoarder too and understand how they feel. My house is a mess yet I bring more stuff home. My son has moved home and no job. He brings stuff home too but usually puts it under tarps in the back. I would love to have a normal home. Bless those who are genuine hoarders and keep the trash. Why do we have all those clothes we cannot wear?

I LOVE LOVE LOVE Peter Walsh! He started the whole thing about decluttering. If you want a great book that can change your life, get Clear Your Clutter with Feng Shui by Karen Kingston. I've recommended that book to several friends (after it was recommended to me) and invariably my friends come back to me and thank me. She has wonderful visual descriptions about how our clutter has little strings that attach to us, so that over time, we're totally weighted down by the burden of the "stuff" we're dragging around. It's a wonderful book. Every time I reread it, I'm up until 2 AM getting rid of stuff!

My hardest clutter is things that were given to me by others. I have multiple clocks my dad made for me that have either broken or are not my style any more. My dad is now gone and I struggle with what to do with them. I know he's not the clocks, but it's hard to let them go. I have one sitting on my dining room table to go to the resale shop (it's a charity shop that helps others) but I haven't actually taken it yet. I have no children, so no one to "will" them to.

I went to the home on Sunday to take them to breakfast and say goodbye. She had told me she had gotten rid of a lot of stuff, well there was more scattered everywhere than I had ever seen. She is supposed to move tomorrow and it will not happen with the amount of stuff she has. My FIL is just wandering around not really sure what is happening. He thinks he is moving to Long Beach where he lived 20 years ago. This is just becoming a sadder situation every day but I can't seem to get through to her that this move is going to be to much for him.

I was not a caregiver of a hoarder. I was the horder. At one time, my house was so full of mostly junk there was just a path through the boxes piled high with stuff. A very close friend whom I loved very dearly, came to me and said, let me help you. You need more room to walk around.

My kids were 12 and 14. I had saved every article of clothing they had ever worn from birth. I had saved every toy they ever had, broken or not. I had saved lots and lots of old newspapers, just in case there might be something in them I needed to read, also junk mail and many, many other odds and ends. Fortunately there were no remnants of perishables, such as leftovers, puppy poop, or anything that could decay. My bathroom was spic and span and clear of any saved items, and my kitchen was cluttered but relatively clean. But the rest of the house was full of boxes of mostly of trash. I had very little money, so I never bought unnecessary items to add to the pile, as some have mentioned above, but there was plenty that needed to go.

My friend sat down with me, and we went through box after box, and we put all the things I wanted to keep in large plastic bags, and others I was willing to discard in boxes for trash. He held my hand, while tears were running down my face. He kept reassuring me, we are not throwing away anything you want to keep. We are just going to move the bags into the unused garage. You have full access to any of it, any time you want. You still have every one of these things, they are not gone. The experience was awful. I felt as if my arm was being torn out of my body.

It was agonizing. I cried and cried, but we cleaned out every room.

To make a long story short, after two years he asked me if I had ever touched anything in the garage. I had to admit I had not. He said, well, it doesn't look as if you really need any of it. Can you let this stuff go? I somehow managed to choke out a "Yes."

So he had a friend with a dump truck, less than a full sized one, came over and help him fill it up to take to the dump. It took three loads to get rid of it all. I stood with my back to the loading process, crying my eyes out. As I said above, the pain was excruciating, as if a limb was being torn from my body, but I knew it had to be done, and he was doing it out of love for me, not as one of my disapproving relatives would have done it, forcing me to "correct my behavior," by throwing everything out on the spot.

Since then, 1979, I have more or less managed to keep a lid on the problem, but it still strikes fear in my heart when I hear the garbage truck picking up and compacting the garbage, "maybe they are taking away something I needed that I accidentally threw in the trash." Sometimes I lie awake wondering where certain things are that I had and valued 50 years ago, that have long since disappeared from my life.

Thank you for sharing from the viewpoint of the hoarder. Those of us who are or have been caregivers can get cynical and jaded, and often not very sympathetic. It helps to know how painful it is for you. I pray you find peace.

My situation is that my MIL is the hoarder and she is also the main caregiver for my FIL. They have only lived close to us since Thanksgiving and she complains because he gets up and moves things around constantly. I have been told that this is very hard on someone with Alzheimer's because it just causes more confusion. She has decided to move back to their previous home and I must say that this is the 4th move in 2010-2011. I don't know how she does it except that most of the time it is just moving boxes from one house to the other. She is in complete denial of the hoarding, she calls it collecting and she says it is the only fun she has left because the caregiving is all consuming. I need to get a VA caregiver in there for my FIL but I am afraid what they will say about the living conditions.

Ohhh Margie, No kidding and then when the economy took a dump - I took on a "why throw this out when I MAY have to buy another one?"

But thx to that show........I have discovered "deeper roots" - none confirmed by a medical professional (lol) but I am adopted. I have no issues or regrets - just NO PAST until that day. So I kept all of MY childhood stuff and my sons.....because it was MINE - it defined me.

But over time I have learned that "memories" are also mine and take up a whole lot less space.

I never would have dug so deep had I not watched that show - it was an eye opener.

I wish you luck with you closets - lol - I can so relate to that! Have a wonderful evening

Where is your husband in all of this? Is he able to offer you support while you deal with his father and mother? It sounds like you're dealing with your MIL all by yourself. If that's the case, I feel for you. It sounds like you've done what you can and maybe if someone complains about the conditions your FIL is living in (a caregiver you bring in, not you) your MIL might listen. She just sounds totally overwhelmed with the caregiving responsibility. Good luck to you and your family.