Looking for advice to have conversation with dad about his hoarding. Long story short, since my mom’s stroke (now has dementia and needs 24 hr monitoring). I’ve been responsible for her care, his care, financial matters, etc. for 13 years. I’ve left my home to help them in their own home because they love it here and their social life is all here. However, my father’s hoarding is getting to me. I tried to dismiss, it but it’s hard to do laundry, shower my mom, I can go on and on. It’s not Dept. of Health level - but enough that other family members are noticing, it’s getting worse, and he doesn’t see a problem. I’ve had it - get headaches before I even face the day, but afraid I won’t handle the talk with him the right way. Essentially I want to give him an ultimatum - “join me in cleaning the house or not - but it will be done. You’re selfish and can easily make the tasks I have to do minute by minute easier on me. Respect and appreciate the sacrifice I’m making by not making me and your wife live in a junk yard! Otherwise, I’m out and you’re on your own.” He has all his cognitive abilities (some memory issues) but I’m sensitive to him feeling emasculated, losing control, maybe even depressed. I know that tone above isn’t the way to go but I don’t think he’ll change his ways without it.
I was hands-on caregiver for both parents with dementia before finding help when I couldn't do it anymore. Even with aides, I still had to manage their care. I lived 90 miles away, and that was hard. I did NOT feel privileged to be taking care of them. I enjoyed no part of the process and am still resentful that they didn't plan better for themselves, other than putting a lot of money away for their care, thank goodness. I didn't feel grateful and blessed that I could take care of them AT ALL, and part of that may be because they didn't take particularly good care of me when I was a kid. Over five years it took them to die, and it was awful to watch. During that time I was also providing full-time care of a stroke victim, had other very serious family issues that needed my attention, and wasn't well myself.
Overall, caregiving has mostly been miserable, except for my love of my husband.
I think that’s where I struggle sometimes - never recognized it as a child of course - but I do get like a minute of compassion - esp for my dad - when I recall the multiple simultaneous jobs, attempts to do my hair when my mom was sick - I have a gazillion of these stories. That’s when I look in the mirror and feel “how could you NOT be grateful to be doing this”. Maybe I need my own therapy - I don’t get why these feelings of guilt are so strong. If I think about it, my thinking goes “yes it’s my life and I’m giving a lot of it up - but what am i exactly missing - that trip to India, Africa, Iceland - a Vegas party - how selfish! Time with husband - yes - but he is very understanding and we find a way.”
“I’ve left my home to help them in their own home because they love it here and their social life is all here.”
I felt like that for quite a while. That it would be a shame for my mom to lose her social connections with neighbors and friends. But the end result has been I’ve lost my connections and community over time. You seem to be on a similar trajectory.
They deserve their home, their friends, their community—but you do not? Think about it.
No reasonable parent would want their adult child to give up so much.
My feeling is that you have a problem with balance in your life. The hoarding issue is frankly incidental. You need to step back, look carefully at your entire life, and try to see whether you can frame caregiving in a more sustainable manner.
I don’t have any magic solutions to offer. I have been caring for a parent with a severe hoarding disorder for about fourteen years. I can tell you that it only gets harder; the chaos becomes more profound, the resistance to change becomes more intractable. The trips to help “take care of things” become ever more stressful. You will discover rotten wood and drywall due to plumbing problems obscured by the excess stuff. Bills, documents, tax info will get lost in the clutter. You will even lose your own belongings in the hoard. (Ever tried to talk your way through airport security without ID, because you’ve lost your wallet in a cluttered house? Not easy.)
I try to think about hoarding within a mental health context. Specifically, I think of it much like a disease like alcoholism. Sad, biochemical, no one’s fault. But also not a problem I can solve. You need to set up some strong boundaries. Most people would agree that making yourself the “solution” to an alcoholic parent’s drinking-related problems is not healthy. The same is true for hoarding. You need to carve out a healthy distance from your father and his difficulties. He will, in all likelihood, continue to accumulate stuff and develop more severe problems over time. You need to build out your life so that he does not take you down with him.
It is also not healthy for you to be so focused on taking care of his emotional life. You should not have to swallow your anger and frustration and very legitimate safety concerns so that he does not have to feel “uncomfortable.” You are taking on a kind of emotional caregiving for him that is not healthy, since he is not capable of reciprocal empathy. Your needs and your mom’s need for a safe, clean space are every bit as important as his needs.
Every family is different. I don’t know what that healthy balance will look like for you, or how you will accomplish it. But I like that you’re thinking about how you might do things differently.
A move to AL (forced by health issues) has helped in my family. The facility management must now take some responsibility for safe living conditions, although there are limits to what they can do. (They clean out the refrigerator as that is health and safety; but no one has been able to figure out how to stop my mom from sleeping with newspapers in her bed. She is a legally autonomous individual.)
Before the health crisis, I had a conversation with my mom’s doctor about unsafe living conditions in the home. Like you, I was concerned about the health and safety of another vulnerable family member. That led to an in-home assessment and a referral to geriatric care services. No startling improvement, but there were other adults checking in on the home once or twice a week, and trying to manage conditions for safety. There are lots of different agencies that will do an in-home safety assessment and recommend necessary changes.
In retrospect, I think it would have been best to separate my vulnerable family member from the hoarder. That was not possible for a variety of reasons. These people cared for each other, much like your parents do, but they had needs that could not be met in the same space.
i guess I feel that my life has been pretty easy - no relationship drama, no major illnesses, great jobs, great friends, traveled - but then boom - my mom’s stroke. THEY have those “stories” - the growing up poor, not knowing where the next meals were coming from, parents who raised them more as helpful hands not children to be nurtured - so I feel like - I’ve had my fun! Time for them to be taken care of - with no worries, by an attentive daughter, etc etc. I’m complaining because I can’t be home to see my soapstone counters go in my home or sad I missed that Kenyan safari?
Real question - when you are willing to give up a lot of your life - does that point to something “broken” within you?
Anyhow - in my response to Geaton below - in all honesty - is my level of sacrifice, desire, whatever to care for my parents “UNNATURAL”? That is was a very close friend told me and I think it she was the “spokesperson”‘for my other close friends to share this with me. In short, my level of care for my parents doesn’t make sense to them. It would make sense if I did it for my children - not my parents. I’m sure they’re upset because I’m the fourth of four musketeers who missed the international trips, major birthdays, social outings - to be with my parents. I would’ve love to have gone but I would’ve been anxious being away and was okay with being FaceTimed. I could share 1000 stories of the sacrifices my parents have made (I’m 62) and it breaks. my. heart. in. pieces. to see my mom as fragile as she is. I have no kids so is this like caring for a special needs child? I’ll admit the “unnatural” comment rubbed me the wrong way but willing to at least think about it.
Is there anyone here who finds this work challenging to say the least but feel privileged, blessed, and grateful to do it - recognizing some days are better than others?
For me it felt very natural and rewarding to be intensively involved in my father’s care. But we had a long and mutually supportive relationship prior to his illness, which was brief. I wouldn’t have wanted to be anywhere else when he was dying.
With my mom, who is a hoarder, a different and more self-protective approach is necessary. I don’t think there is anything unnatural about that, either. It’s just whatever works for your family and your situation.
Even so, there are times when I truly enjoy helping my mother and spending time with her.
My 75 yr old father is also a hoarder with schizoaffective disorder and vascular dementia. My mother is currently on hospice with pulmonary fibrosis and is actively dying. We left everything to come to stay with them until she passes. Because of his disability he can’t live alone, but because of his hoarding and my mom letting him do what ever he wants without accountability, my husband doesn’t feel like we can continue to stay here or bring him to live with us. My dad can be manipulative and tends to lie when confronted with the truth. Dad of course wants to stay in his own home, but is in a different state than where we have current business licenses. The rest of the family lives within 90 minutes from my dad, which is another reason to stay. I have two sisters, both younger than me. One has bipolar but lives ten minutes away from dad and one who lives 90 minutes away but works full time and has four kids under 16. Also, my husband and I have been caregiving for family during the majority of the past ten years- for my grandfather, my uncle and aunt, and now my mom. We are also within 5 years of retirement age but since we have depleted our savings caring for everyone else we have nothing for retirement. I just don’t know what to do about my dad. I feel guilty that I may not be able to be there when he needs me most. But as gracious as my husband is I know I need to do what is necessary for us also.
You seem remarkably tolerant, so a tidy up might make things easier for you while leaving enough to keep D happy. He might even (possibly) enjoy going through the tidy piles and finding all his treasures again – or even (possibly) saying ‘why did I ever keep this, it can go in the bin’. Worth a thought?
The question is, how does this impact your mother? Living in the house does not sound safe for her, being at risk of falling over the stuff, delays if paramedics need to come in, or unable to escape a fire. How does she spend her time during the day, if she doesn't have free access around her house?
You say their social life is there. Do their friends and family come over regularly, or do they go out to see them regularly? Is the hoard having a negative impact on that?
And how about your husband? Does he mind the time away from him, or having them in your home when you do bring them there, or is he okay with the situation? Not saying he should feel one way or the other, just that you should be on the same page about all this since it has a major impact on your availability to him.
Fawnby has a great description of a good memory care facility, just in case you want to reconsider that as an option for your mother. Placing her in one nearby, so your dad can still visit every day, might be an option. I suggest at least looking at a few.
Or packing her up and taking her to your home while leaving your dad in his hoard might be the solution. The advantage to that is you could just do it and see what kind of an impact it has on both of them, without making a long-term commitment. Your mother might be inconsolable, or she might brighten up and be happy in a more pleasant and functional environment. Your dad might just choose his hoard, or it might be a wake-up call for him. Would your husband be glad to have you home for the long term, or would having your mother there stress him out?
It's a very challenging situation. You're entitled to vent! You have a remarkably good attitude about it, considering how long you've been doing this. I wish you well and hope you'll keep us posted on what's happening.
Put your mother in a LTC facility and leave your father to his hoard. You go back to your life. You've been the caregiver to your parents for 13 years. That's plenty long enough. You don't owe anymore.
Your dad is more than stubborn. Truth: He's displaying symptoms of mental illness. Getting your dad to clean up and throw things out won't happen. Ever. Due to his broken state of mind, an ultimatum will not work. Understand that, and also get over the nonsense that anything you do will make your mom "cognitively better." People with dementia get cognitively worse, never better. You're leading yourself down a garden path, tra-la, tra-la, "I'll wave my magic wand and everything will be lovely and beautiful and we won't get rats." You're not being realistic.
As for not wanting to emasculate dad, good grief. The last thing you need to worry about is his puffed-up male ego when you're at a breaking point and stuck at "I can't do this," and "I won't do this," and they're unsafe living in a home where you have to scramble over carpet to get in and windows are nailed shut so they can't get out in an emergency. As if they could anyway, with dad sick and mom demented, maybe enough to set fire to the house that they can't escape.
Admit what you are facing, and make plans for them to move elsewhere. Then you can get back to your own life, which you deserve to be able to do. Good luck.
I’m not sure what the correct term would be but when I do engage her in regularly consistent tasks or actions. I can do it for a few days or a week and say “it’s noon - what do we do now?” And she’ll say “walk in the backyard”. Or “it’s 5pm - what did we forget to do” and she’ll know. I can’t help to think just engaging her in regularly scheduled activities around the house will at least be enjoyable for her and keep her more physically active - both better than the current situation.
I agree the hoarding is a mental illness so I’ll have to face that I’m fighting a losing battle.
Thank you.
Yes, this is the only strategy you can really pull off.
1) hoarding is a mental disorder because it is *irrational* (like him saying the 30-yr old fridge in his yard represents his life). If you go ahead and start cleaning without his blessing he will become agitated and possibly enraged. He may even agree to it one day to stop you from nagging him but when you actually show up with a dumpster he will go nuts and block you. Been there, done that with someone dying of cancer who was a hoarder that I was trying to help. They will jerk you around and not care.
2) If you are not his PoA then you still won't be able to force him to move unless you physically wrangle him out. He doesn't control your Mom if she has all her mind and he isn't her PoA. She needs to agree to go with you but then don't be surprised if she pines for him and goes back. Also been there and done that with my MIL.
3) the only person you can change or control is yourself . You need to have boundaries and healthy perspective so that you don't burn to a crisp trying to rescue them from themselves when they don't want to be rescued.
4) "My dad has never been diagnosed with any cognitive impairment." Unless you are the one who took him to this test and stayed in the room to see the results, you have no idea if he's been tested or what the results actually were. If you are going by what he or your Mom has told you, I'd doubt it deeply. All his behaviors you describe point to a cognitive/memory problem.
You should probably just report them to APS, and keep reporting them until he gets a court-appointed 3rd party legal guardian who *will* be able to extricate him from his home since they do it all the time. You now need to have adjusted expectations for what a solution for him acutally is. There is a solution, it's just not the one you had envisioned.
I just have to admit that I struggle with the guilt. I am healthy and financially ok. No kids. I am middle aged with both parents around while and their care is kicking my behind and they are different - they’re here. What’s that saying about those who are blessed with a lot should give a lot?? That’s what I feel. Deep down I even felt guilty posting that I was angry about the hoarding! Who gets to witness their married parents of 65 years around and loving each other, laughing with each other. Have I given up a social life. Yep. Time with my husband, yep. Ugh. I feel a little selfish sometimes too.
decision time! Thanks.
Your mom does deserve much better living conditions, and it may just boil down to her having to be placed so she can be safe and taken care of 24/7.
What you described in your reply to "jwellsy" is not safe for you or your mom.
Does not matter that it has not reached the pet feces and rat droppings you mentioned.
It is not physically safe for you to be caring for your mom in a place where you have to climb over things or you can barely open the door.
What would happen if you had to call 911 would the paramedics be able to get in safely and get your mom out safely, or you or your dad if one of you got hurt?
And having them in Assisted Living does not mean your caregiver duties end. You have a sometimes more challenging task of being a Care Manager. But they both will have more activity, more socialization.
Are there Adult Day Programs in the area? They may both benefit from that and it would give you a break and a chance to begin a clean up/out process.
Not saying you have to get rid of things but box up the stuff that has been put in a closet that he may not even know he has.
That’s my struggle - when does being sensitive take a back seat to safety or my comfort level given how much I’m willing to sacrifice. I’m trying real hard to recognize he may be a sentimentalist, hoarding is his coping skill given my mom’s health issues, he may hate feeling like he was once a “man’s man” but not has to listen to his daughter in his own home?? I’m trying but I’m seconds away from yelling at him that I know intellectually wont solve anything.
My last resort as I type is to pack up my moms things and my own. Head back to my home and tell him - have at it. Your house do what you want.
yes - I leave my home and husband to take care of them in their own home for months at a time. Then I bring them to my home for their doc appts. Rinse and repeat.
I would be lying if I said I’d consider assisted living. It’s something I couldn’t do. Rather be stressed and caring for them than anxious not caring for them.
he won’t acrept help and I feel he think as a daughter this is what is supposed to be done.
i may just have to accept it is what it is and try to be grateful that I have been blessed to take care of them. At least thinking that way keeps me from jumping off a ledge. 😵💫
Your dad may have a different definition.
Is it bags of wet garbage and piles of newspapers,
or flats of canned goods and WW3/grid down prepper supplies?
Picture every corner in the bedroom piled ceiling high with a mixture of clothes and shoes. Every closet is filled with suits. Every surface - dresser is piled high - old mail, empty paper cups, years old greeting cards, every door has those hooks on both sides to hang clothes that won’t fit in the closet. Windows nailed shut. Carpet dusty, ceiling fans dusty. So it’s clearly not sanitary but not the pet feces or mouse droppings level yet. To climb over things over the carpet and barely be able to open the door to let my mom out daily is taking its toll. Before the day even gets started I have to take a deep breath.
Has your dad been diagnosed with dementia? You say he has some "memory issues" it might be more advanced than you think it is.
"Hoarding" can sometimes be "symptom" of dementia.
If dad is cognizant then this is more of a psychological condition and needs to be addressed as such.
Has he always been a hoarder, and you have put up with it for 13 years? What has gotten it to the point so that you can no longer tolerate it, it is getting worse?
What kind of help does dad need himself? You say you are responsible for his care.
It might be to the point where you tell him you can no longer carry on helping him and he needs to either
1. Place mom in a Memory Care facility or possibly Skilled Nursing if that is the level of care that she needs. Then you back off, you return to your home and go on with your life.
(I do hope that you have not left a family and a job to care for your parents)
2. Hire caregivers that will come in and care for them.
If dad or mom are Veterans the VA may have programs that can help.
The VA will pay family to be caregivers.
I would start by a whole lot of online research.
I would also reach out to your local Council or Agency on Aging for advice.
I would also discuss with Dad's MD and with the Dept of Health and with APS when necessary.
While the Hoarding reality TV shows are certainly in most cases well above what you are dealing with, watching a few episodes will definitely give you an idea what the mental issues are involved with Hoarding. This isn't something you can or ever will be able to control unless your parents are in care. If it hasn't come to that yet, you do need to understand that it will, and be ready for that. I am so sorry.