Can anyone help me deal with a hoarding mother?

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I care for for both of my parents on a pt basis. My siblings and I are trying to get them to go to assisted living, but my Mom refuses to leave and my father won't go without her. We have had numerous people assess their needs and no one seems to notice the hoarding as being a critical issue. Their health is declining and I find myself getting more involved with their care. I am a newly single Mom of a 16 year old girl. She needs me to be a Mom, and the issues with caring for my parents is affecting her. I am trying to go back to work as I haven't been able too due to the extra time in caring for my parents. Additionally my mother is very selfish and manipulative, and honestly a toxic person. I know I have to release the ties or it will have negative affects on my well being and then my daughters. Can anyone provide insight you provide guidance or resources for dealing with the hoarding issue? I have exhausted all community resources, and their PCP physician has put his hands up as to what he can do.
Also my Mom is open to getting care in the home on a daily basis, but she has control and trust issues, so she only wants certain people doing it for her. Just wondering if others have dealt with hoarding issues?

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Take 10 steps backwards from your parents, who need more care and tending than you can give.

They are competent to make their own bad choices; you make your own good ones.

You have a 16 yo daughter who has just had her world rocked by her parents' divorce. That is where your obligations lies right now.
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caitlynzmom, this is something I wished I would have done earlier on when it came time to help my parents with various things. Make a list of everything, and I mean everything you do for your parents.... now cross off half the items on the list... then cross off a couple more things. Keep that list handy, so when your parents ask for you to do something you can say "sorry, I can't possibly do that", and keep it short, even if your parents throw out some guilt your way.

What happens is that we, the grown child, are enabling our parents to keep up their own lifestyle while we need to make major changes to our own. I bet 10 years ago if you asked your parents about caregiving, saying you would need to quit your job, and spend less time with your daughter, your parents would have said "no, do not do that".

As for the hoarding, I seen enough shows on TV to notice that is it almost impossible to curb the hoarding, it will continue no matter what. There are some successes, but not many. Most caregiving Agency will not send their employees into a hoarding situation.

Sadly we need to wait for an emergency situation before we can finally get a parent to move into Assisted Living if they can budget such the cost, or into a nursing home where Medicaid [different from Medicare] will fund the cost.

I had to do that 'wait' with my own parents [in their 90's], wait for that panic call, run down to the house, then call 911. In the mean time you are sitting on pins and needles every time the telephone rings, and have many sleepless nights, while the parents are sleeping soundly with no care in the world. Not fair, is it.
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Oh, the old "your parents raised you" theme. I remember one time I was grumbling about driving my very elderly parents over hill and dale. A co-worker said to me, well your parents took care of you when you were young. To which I replied, well my parents weren't in their 60's when I was a child, big difference.
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I have a friend whose mother was a hoarder. Once the EMS and fire department had to work together to cut a hole in her bedroom wall to get her mother out of the house.
Sadly, her dad died before the mother. He wouldn't leave his wife either.
The mother ended up in a NH after the dad was gone. He had been the care giver but he enabled the mother in all her issues.
After the mother died, the daughters had the chore of cleaning the house. Two floods made a nice mess.
Do not allow your mom to suck the life out of you. This is a critical time for your daughter and for you.
If you could get the dad out, she might follow but probably not.
Get yourself and daughter into therapy. You have to detach.
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Your parents' hoarding is Not Your Fault. It is not your responsibility. If they wanted your help you could provide some. But they don't, so you can't.

If the hoarding is hazardous to their health -- attracting varmints, threatening to topple over on them, making egress from some rooms dangerous -- then report them to Adult Protective Services. If it poses no danger, let them live in it.

You need to detach from your parents. You need to nurture your daughter. I'm sure you know this, but having dysfunctional upbringing may make that especially hard. If you are having a difficult time doing what you know you need to do, seek counseling.
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@freqflyer thanks for the reply. My mother thinks it is the children's responsibility to care for her and my Dad, because they raised us. I told her that is very selfish, especially given the fact that she is turning her grandchild away from any sort of relationship with her. I realize the toxicity of this thinking and am starting to let go. The manipulation is the toughest thing to deal with. She is a master! Yes, I think it will take some tragic event to force the move to other housing, I am preparing my mental mind to accept the outcome. I have a sibling who lives 3 hours away and she constantly feeds stree regarding this situation. She is the executor of their affairs so unfortunately I can't totally block her from my life. Anyway, thank you for your insight, honestly I think I just need a neutral place to vent, as the dysfunction of growing up with a narcxisitic mother and father have result in siblings that really can't effectively deal with my complex situation. They just don't get it as they aren't dealing with it everyday in a physical capacity.
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My mother hoards. She is a child of the Depression. My parents owned a farmhouse, that had lots and lots of hidden storage space. When they filled the storage space, they hoarded up the barn. When they filled that, they hoarded up the garage (dumb idea). Then, they purchased sheds and hoarded that up. They were not considered hoarders, because they had money so that they could hide the hoard and look 'normal'.

I'm familiar with hoarding because I have two friends who hoard. Hoarders need to be treated by a mental health expert who has specific training in this disorder AND the treatment needs to happen at the person's home. Office / Clinic / Hospital based treatment for hoarding has been proven to be ineffective and can make the problem worse.

Before going ahead, you want to assess how much of a problem hoarding actually is. Here is a link to the Internal OCD Foundation's Clutter Image Rating Scale: http://www.hoardingconnectioncc.org/Hoarding_cir.pdf This rating scale has nine pictures of living rooms, bedrooms and kitchens, in various levels of clutter. It does take some judgement, but what you do is choose the picture that best describes the level of clutter you are seeing. If the average level of clutter is similar to rooms #4 or higher, you really do have reason to be concerned. I live in federally subsidized housing. Where I live, if your place looked like that in #2 or higher during an annual inspection, you would get into trouble.

The first thing I would do is contact your Council for the Aging. Hoarding is a common problem amongst seniors. My local COA has a social worker who is trained to treat hoarding. Not only does she do home visits, she has a group for 'clutterers' that meets regularly at the local senior center. She's in contact with local training programs and can arrange for a hoarder to work with an occupational therapist or social work trainee who is learning to treat hoarding. These trainees are well supervised and enthusiastic. Unfortunately, these sort of training programs are few and far between. If you don't know / can't find a local Council for the Aging, I would call your state's Office of Elder Affairs--they'll know who to talk to. If that doesn't work, call your state senator or state representative's office. They have a constituent services representative, who will work on your behalf to figure out who you should call.

In my area, we have Elder Services--which is a different organization (with different eligibility rules) than the Council for the Aging. I would try contacting them as well.

If this doesn't work, I would consider consulting a private Elder Care Coordinator who has mental health training and experience. Mine was an advanced practice nurse who was a nursing supervisor for the geriatric unit at a well-known psychiatric hospital. She was very good at sussing out the situation and helping you create a plan as to where to go from here. She was experienced organizing interventions, moderating family meetings, supervising care, etc. I would consider going this route.

This is important: hiring an organizer / cleaning service to help your parents de-hoard is only a temporary solution. The research is very clear on this--when hoarders are forced to clean up, but the hoarding itself is not professionally treated, they will continue to hoard and it's likely that they will recreate the problem within a few years. This is why hoarders need to work with someone with mental health training. In my friend's case, she did get a cleaning service to help--but only after she made significant improvements in her hoarding behavior and was actively getting rid of junk. My friend 'graduated' from the mental health intervention, to the 'Certified Professional Organizer' and is doing really, really well.

If the hoarding problem is serious, potentially life threatening AND your parents don't / can't do anything about it, then it's time to call Adult Protective Services. Remember that your parents are adults and adults are free to make some pretty dumb decisions.

Your first responsibility is to your own family, especially your 16 year old daughter.  She comes first... if it's between taking her to a band performance and visiting your parents, please, take your daughter to band--and enjoy the performance. If it's between taking your daughter on a trip to visit colleges or minding your parents, go take your daughter to visit colleges. (Visiting colleges is fun!) It's not your job to wait hand and foot on your parents. 
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It sounds like your parents are of sound mind. If that is the case - they can choose to hoard or not, move to AL or not, hire help or not. This is their monkey not yours. You mention that you are a newly single mom of a 16 year old girl. It sounds like there were some unpleasant changes - I think you need to focus on your daughter. She probably will need your emotional support - I remember 16! Also - you said you need to work. Focus on your daughter, focus on getting a job, and determine what little time you have for your parents & what you will do and NO MORE. Good luck to you.
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I feel like I'm reading an excerpt from my life. Although my father passed away 12 yrs ago, my hoarding toxic mother hasn't changed her habits. If anything, they've gotten worse. I had social services come in when my mom was in the hospital for knee surgery. They didn't say it but I lead her to believe if the junk didn't go she wouldn't be released to home but assisted living. She didn' t want that and I cleared out the mess. I had to call for an extra, oversized trash pick up that cost her over $200. The house was clean from top to bottom, by me, and when I brought her home she was actually happy! Her house was clean and clutter free. However, it didn't take long for the hoarding to start again. The next time she had to be hospitalized I just went in and dumped it. Another $200+ in fees. She's now 89 and it's a hazard in so many ways. She also has control and trust issues and I'm her POA and only living child. I should have prefaced this by saying when it all started I lived in another state and was a single mother to 3 teenage boys. At a time they needed their mom the most I had to leave every Friday night and drive to their house and drive back on Sundays. After my youngest son graduated from high school I made the decision to move back to my hometown. It was one of the worst decisions I ever made! It was so hard on my boys who were then 18 and up and alot happened with them and I can't go back and change it. My advice to you is concentrate on your daughter and yourself FIRST. If there is time and you can turn this into a life lesson for her, good but she comes first.
I'm almost 60 yrs old. I've spent the last 20 of it trying to do what I thought was best for my mom and my own health is in the toilet. She's healthier than I am and I'll probably die before she does.
I'm telling you all this to stop you now, before you make the same mistakes I did. Take care of you and your daughter, you come first. Whatever spare time you have, try to involve your daughter so she understands but don't force her.
I'm praying for you and I pray you find a good job that will support you and your daughter, that you and your daughter can work together on the grandparent issues and take care of yourself first. You're no good to anyone if you end up like me. Prayers and goodluck to you, you're a great mom and daughter, don't ever forget it!
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It took a catastrophe to start the cleaning and decluttering (to put it mildly). My mother was in a car accident and spent a week in the hospital. When she came home, a visiting nurse came to her house. Two days later an investigator from Health and Senior Services came to her house. The result was that she was ordered to correct the "safety hazard" - all four rooms of the first floor. I finally had to walk away from my mother. She fights anyone who tries to clean her house and get rid of the hoarded mess. Waist deep in her bedroom. Screaming at me for trying to remove useless stuff. She made sure that I knew she was angry every minute that I was there to help. As a result, 80% of her hoarded stuff was moved to the second floor rather than removed from the house. This resulted in her dragging things back into the first floor and re-creating the obstacle course that will eventually cause her death by falling. It's a daily task to clear the pathways. I got a sinus infection from being in her house due to the cat hair, dust, dirt, and who knows what else was in the air. Finally, she was emotionally and verbally abusive to me one last time and I left. I thought I was having a stroke or heart attack. I thought I was going to faint in her kitchen. I can't risk that again. I won't risk it. I felt like I was having a nervous breakdown in my car after I left. It's been over three weeks since then. I feel so much better physically and mentally. I told her that if she needed anything she could call me and I would try to take care of what she needed, but from a distance. I won't go inside her house if I can avoid it. I take care of her checking account, I pay her bills, I keep track of her medical appointments, but I will not be alone with her. I felt guilty at first,but no longer. I told my brother he would have to deal with her in person because I will not do it any more. That includes giving her rides to her doctor appointments. She doesn't treat my brother or anyone else with the venom she spews on me. I can barely talk to her on the phone because after about five minutes she begins her abuse and I hang up. It's sad and gut-wrenching to detach, but the alternative is the risk of some permanent physical and mental damage due to the stress. I simply won't take the risk anymore.
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