We have been helping my mother get moved to a very nice (knock wood, looks good at any rate) independent living facility near us. She and my Dad had been living in a home my husband and I own for the past two years because their living situation (mold, filth, hoarding) in their apartment was untenable and unhealthy. Dad passed away at the end of August, and I've worked hard to gain Mom's trust and to temper my own feelings around her to try to be as supportive and emotionally encouraging as I can.

The move, which we are taking very slowly, has been going well, but today I just feel overwhelmingly discouraged and angry. It isn't that anything terrible happened today just a normal day of picking through the piles and piles of trash, soiled laundry, pet and human waste stains and smell to ask Mom what we can get rid of, and trying to be patient while she loses focus again and again and again. She was also irritable today, which made it very difficult to get anything done (yesterday, on the other hand, was a good day). Also, although it was our choice to pressure them to move to our house (we bought a new house for ourselves), it's awful to see the condition it's in now. We put every extra penny and so many hours (10+ years) of our own blood, sweat and tears into making that house a home. Now it's covered with feces, urine, blood, dust, hair, dead skin, roaches. The stench is awful. It's what we knew would happen and was a sacrifice we were willing to make, but maybe it was a bad decision. The cheapest decision, in the long run maybe. Maybe the only one that would have gotten them to move from their apartment. But a painful, even hurtful choice, nonetheless. It's hard to see the results of our hopes and dreams and hard work reduced to a rehab project.

No real question here. I'm just looking for support and encouragement. By the end of the day I felt overwhelmed; I regretted deciding to help in any way, to be honest (which was always a choice) because I am faced with an impossible seeming situation: Mom is declining rapidly, we have been unable to identify any reputable memory care places in our area to plan to move her to in the future, she has no resources beyond SS and our state could really care less about folks who can't 'pay their own way' (SS is considered by many here to be just another form of 'welfare' my own parents were ashamed to collect it). Even if we rely on the state in the future, the waiting list is so long and there are so many people in much more dire straits than my mother that she could literally die waiting for a place.

I am committed to seeing this through with her and to helping her in any way I can, so long as I can retain my own mental and emotional (and physical) health. This move will be a huge downsizing effort and should help to solve a lot of the problems that have plagued us for decades, though certainly not all. And there is also the heartbreak of watching my only other immediate family member disintegrate more and more quickly, always just out of reach of my ability to improve her situation without having to be with her to ensure basic things like hygiene and eating any kind of healthy meal are taken care of.

For the countless others in similar situations I've read here. How do you care for yourself on days like I'm having? Days where all you can see is catastrophe and nothing seems like a solutions? I know waiting these emotions and thoughts out will help. Tomorrow I may see the positive side of everything. Meanwhile, it sure is painful and hard. What helps you in these moments?

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Move her and THEN deal with the trash.

Asking a person with dementia to deal with their hoard is madness.

I'm sorry if that sounds harsh. It's the truth.
Helpful Answer (17)
Reply to BarbBrooklyn

Wow, that's a lot! and lately I am having a lot of those days.
I recently moved my sister with Alzheimers across country to an independent living in a community near me but she will need more care soon.
The move was huge and discombobulating for her; she is still recovering. I spend a lot of time with her ensuring she's safe, eating ok, bathing, etc. as much as I can. Beside the clearing out of unending STUFF!
On the days I get overwhelmed and discouraged, I remember three things:

1. I try to live in her reality and not try to make her live in mine.

I.e. distract her when things are not going her way, agree with her view of things (as much as safely possible) NEVER ask if she remembers any thing, because she doesn't unless prompted, and try to engage her in simple things like going for long drives, fun movies, putting a puzzle together, etc. We went to visit my parents grave the other day! She just got a digital picture frame (AURA from Amazon) that friends and family can send pictures to and she/we love sitting and reminiscing.

2. If today is the last time I ever see her, how do I want to remember her/our time together this day?

3. Done is better than perfect.

You are at the beginning of your journey and that part is really hard until you get her settled. It will get better and remind yourself of that, and give yourself a big hug for all you do. She is lucky to have you!
Helpful Answer (13)
Reply to Tmounsey56
NeedHelpWithMom Mar 13, 2023
What a sweet and very insightful posting. I hope many people will read this and learn from your experiences and terrific outlook on life.

I especially love how much of a realist that you are.

You are very wise.
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For anyone to consider social security "welfare" is beyond ignorant. It's funds WE HAVE SAVED OURSELVES thru decades of sweat and blood work! So in Austin Texas the population feels they should say NO THANKS to their own hard earned money, while tons of people collect REAL welfare who are gaming the system? Smh.

Your mother is a hoarder with dementia. She will decimate YOUR home the same way she did her own. And the "maybe" pile will turn into the "keep" pile in short order bc it's impossible for her to let go of most all of her toxic garbage.

Cut your losses NOW, get mom placed and THEN see what you can salvage of your home before nothing remains TO salvage. The best self care you can give yourself is a solid plan of action to get her placed and stop allowing her to ruin your life or your home any longer. That means you're putting YOURSELF first, for a change, instead of allowing this madness to continue.

Today is the day to realize this and call an Elder Care atty to guide you thru your options, like Medicaid. Don't bother asking your neighbors how they feel about "welfare medicaid" bc they'd be the first in line applying for it if their home was being destroyed by an Elder w dementia and hoarding disorder!

We all wring our hands over the dreaded day they move into managed care, yet the truth is, they do FINE and we've wrung our hands in vain all that time.

Best of luck to you
Helpful Answer (12)
Reply to lealonnie1
Way2tired Mar 1, 2023
Spot on lealonnie !! SS is our country’s pension plan that is mandatory for us to pay into . It’s not welfare .
Just an update, here... Mom is now spending the night at her new place in IL. For those who wondered, it includes weekly housecleaning and linen service, 3 meals per day in the dining room if she gets there on time (she hasn't eaten there yet) but she also has a full kitchen. There are multiple activities onsite she can participate in, from visiting musicians to a weekly painting class. I will be surprised if she participates in them, but they are options. I'll also be coming by frequently throughout the week. I plan to keep the laundry done and the apartment straightened up -- my hope is that trash and filth will no longer pile up around her.

She has been great about just letting my husband and I do what we need to do with everything left in the house, which is the vast majority of her possessions. Our plan is to stage a room as a "boutique" for her to select some things from, rather than asking her to stand by and direct us or asking her about every item as we go through things.

She has not been assessed for dementia or for other causes behind her cognitive symptoms. She claims she's spoken to her doctor about it more than once and even asked specifically for a referral to a neurologist for further testing -- but the neurologist is not seeing Medicare patients, as it turns out. Other senior programs for testing here and in Houston currently have waiting lists. I very much wish she would switch primary care physicians but she refuses to do so.

Meanwhile, she's handling this very well so far. I'm sure we'll continue to struggle on some days as we prepare to get rid of things -- but it's honestly going so much better than it has in years. And she does seem very relaxed and comfortable in her new place (thank goodness).

One last thing -- for those who mentioned that in their experience, out of sight is out of mind... yep. We've noticed that, too. We're also employing the, "Can I have that?" approach if she's unsure about something. It's reassuring to her to think I'll take something, and then I can do what I wish with it. But that's happened only a couple of times and only with very small things.
Helpful Answer (10)
Reply to groovygal
Way2tired Mar 4, 2023
Hope things continue to go well .
.Like the boutique idea !!
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My dad, who was completely fine in the head, realized about two years before he died that he and my mom were going to leave us with 50 years of accumulated "stuff" (not hoarding, thank goodness) and decided to start purging. The problem was that he had to find a home for Every. Single. Item, and could not be persuaded to just send some of it to Goodwill or the Salvation Army. He finally agreed to "gift" me with some things, knowing I would toss them on my own because they would now be mine, but in the end I told him to just stop worrying about the task and I'd deal with it when he and my mother were no longer around to worry about it. I said to enjoy their things while they still could and not to worry about the rest.

It was a monumental task. It took four days and two dumpsters just to clean out his garage, and I brought in an estate sale company and a hauler to deal with the house contents.

As Barb said, move her first, then deal with the mess. Try to look at it as a bad tenant, because that's really what your folks were, and that can happen to any landlord with an investment property. (Our first tenants did $6,000 damage to a BRAND-NEW construction duplex in just four months.) Just try to disconnect from the fact that it was your parents and not a random tenant, and do what needs to be done after an eviction, as this kind of is. Bring in a hauler and have them just take it all away.
Helpful Answer (9)
Reply to MJ1929
NeedHelpWithMom Mar 1, 2023
Do you think men and women save equal amounts of stuff? I think about the ‘sentimental’ stuff that moms save from their kids!

I guess men can save just as much according to your dad. It’s interesting what people save.

People have interesting collections of junk too! Not things that I would consider collectible, stuff like salt and pepper shakers! LOL 😆 Those things don’t interest me in the slightest, but whatever floats a person’s boat, I suppose.
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Couple of suggestions,
- create a visual “calm” space for yourself. As we’re approaching Spring, I’d do it outside with a table and chair that you can go to to sit and chill. Scroll your iPad or phone and remove yourself physically and visually from the clusterF your parents created in your once lovely home.
- do a playlist of music you love and have it going while your at the home, aloud if you can or earbuds if you can’t. Then blast in the car when you leave….. mine was the music from GoodFellas, via SoundCloud & Spotify as I wanted all the songs. If you don’t know how to do this, ask your kid or grand kids as they can do it in……10..9..8..7..6 here ya go grandma it’s on your phone in seconds!

You & your hubs have gone above and beyond the pale to do for them and unfortunately they / now just mom are a combo of unappreciative and do not understand the seriousness of their predicament. Ya can’t change it.

I have a ?, has your mom already moved to the IL? & if so, how is it going?
is all this being done to get her ready for the move? Was any type of “needs assessment” done prior? Did IL require mom to do a “play date” or a luncheon & activities session at the IL before allowing her to become a future resident? Or did you just tour the IL then did a deposit all on your own?

Also please pls realize that the reality shows - like all other filming - have folks (crew) working in art, set and property departments that do add, move or reposition items for dramatic effect. Lots of smoke & mirrors.
Helpful Answer (7)
Reply to igloo572

we were heartless or maybe we were kinder we moved the folks into a nursing home with a few things from home - and went back and emptied out their house without them. reading your story i think we were kinder

retail therapy helps me, just looking through racks and getting out

walking was my biggest get away - a nice vigorous one hour walk once a day chatting with friends on the phone while i walked walking keeps me from gaining weight so i don't get stressed out about enjoying eating
Helpful Answer (6)
Reply to OncehatedDIL
Way2tired Mar 1, 2023
I agree . Take what they need without the dementia person there “ helping”. My husband took his Dad to get his things in Florida to move back up north by us . Hubby said it was a disaster . All FIL wanted to do was go to his favorite restaurants one more time . FIL came back up NORTH with 20 bathing suits and pairs of shorts .
So sorry that there isn’t a way right now to get your mom placed in AL or MC as it sounds like that is more what she needs.

Its exhausting for both of you to have your Mom go through that mess. This Is how I did it with my mother …Quickly move her with what she needs . And bring some other things you know she would want , a few framed photos etc . So she has some familiar items in her new surroundings.
Then you go through and throw out the trash. The other stuff that she may ask for , photo albums a few favorite Knick knacks whatever save them in a few boxes . If she asks for an item bring it. Or you can bring one box at a time for her to “ go shopping in .” After the third time my mother didn’t ask for anymore boxes as it was too stressful . If she asks for an item you threw out . Say you are looking for it .

Rely on friends , this site , etc for support . I walked ALOT . It would help the anxiety . There are caregiver support groups however I never found time for that . Try a long hot bath with a bath bomb. Read a good book to escape , even if it’s just 15 minutes a day . Get your hair done , or a massage , Go to dinner with a friend.
Helpful Answer (6)
Reply to Way2tired

Seems she is moving Mom.

My Mom had a 4 bedroom farm house. She had 55 yrs of "someone may be able to use that." She went to an AL so only needed the basics. I agree, if Mom is showing signs of Dementia asking her what she wants to take and what not can be overwhelming to her. Just take what you think she needs and get her moved in. Then go back and clean out the house. I would wear a mask, gloves and get disposable coveralls since you will be dealing with feces, urine and roaches. Start with cleaning that stuff and then get rid of trash. Clean out the frig and the food cupboards. Then start on the other stuff. You may need to hire someone to really clean. May have to tear up rugs and get rid of.

I so hope her animal/s are not going with her or you will have tge same problem. If Dementia is involved she can't care for animals.
Helpful Answer (6)
Reply to JoAnn29
groovygal Mar 4, 2023
She did move her dog with her, however, I asked her to ask her brothers and their spouses if they would be willing to take him if she becomes unable to care for him, or if he continues to eliminate in the new apartment. Both uncles immediately said yes, though neither offered to take him immediately.

So far, miraculously, the dog has not had an accident in the new apartment (over the course of 48 hours). Which is weird and amazing. Maybe he just likes it better in the new place?

We will definitely be hiring professional cleaners at some point, though we've been cleaning as we go (especially today).
I hope you’ll move mom ASAP and then plow through the mess. Dragging it out going through it all slowly with her is only making it so much harder for you both. I’m truly sorry you’re going through this, take a walk outdoors whenever you need a break, even just a few minutes can refresh your spirit. I wish you peace in the storm
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Reply to Daughterof1930

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