Lewy body dementia and Mom: Why does she make it so much more work for me?

This is Dementia.
This is what it does to everyone.
(by everyone I mean that dementia not only effects those that have it but friends and family. I think it effects friends and family more than the one diagnosed)
A few suggestions.
*Get a caregiver to come in and help YOU. Yes the caregiver is for her but taking some of the pressure off will help YOU.

*If there is an Adult Day Program near you get mom involved. She will be gone most of the day a few days a week. She will get socialization and you will get a break.

*This is the difficult one. If caring for mom is more than you can handle mentally, physically, emotionally begin looking for Memory Care for her. You can not put your health at risk caring for her.

I am sure she did not intend to make more work for you
I am sure her intention was to help
You have to remember that her brain is not working properly.
She can not change, she can not get better, she will get worse.
YOU have to change the expectations that you have

My mother told me she’d done her laundry. I couldn’t find her clothes. And I knew she was starting to forget how to work the washer. She had taken all her dirty clothes and put them away. I went through her closet and found almost every shirt she owned was obviously stained or smeared with food, but on a hanger. Dirty pants on the hooks. Underwear and socks hidden all over her house. I am STILL finding socks. She must have 50+ pairs.

Funny and oh so frustrating.

Creating more work for caregivers is what dementia does. It's an awful cycle of "whack a mole". You fix one issue and another pops up, or the same issue recurs when you think you have solved it. It's relentless and gets more so over time.

When it gets to be too much you put the person into care if at all possible. Every caregiver reaches the "it's them or me" part of care giving. There is no shame in that. NOBODY can do this 24/7 and stay healthy and sane. It's impossible.

It really helped me to learn more about dementia by watching Teepa Snow videos on YouTube. People with dementia have broken brains. They lose their ability to work from reason and logic and therefore judgment; they lose their inhibitions; they lose their ability to empathize with others; they lose their short-term memory and start forgeting how to do things they did all their lives or recognize/remember familiar people. But they can't help it or prevent it no matter how hard they try.

Worst of all, they "look" the same so we treat them the same, react to them the same and expect them to be the same. It's a cruel disease. That's why educating yourself will help you to have better, more peaceful and productive interactions with your LO, since she is living with you. You must protect yourself from burnout, and give yourself as much care as you are giving her. Venting is good.

Sadly, mom can no longer 'think' from point A to point D in any kind of way that you can understand. And it's not going to get better, I'm sorry to say.

Neither of my folks really developed 'bad' dementia. We could always talk them through things, and they remained lucid to the end of their lives.

My MIL, on the other hand, has something going on with her--since I do not see or intteract with her at all, I only hear about it, after the fact when something has happened. DH gets SO FRUSTRATED with her, as he cannot step away and look at her with clear eyes. He just sees her and says "She's crazy". Well, yes and no.

She's always been difficult, but now she's much worse. IS this dementia? IDK. He and SIL will not have her tested and so they just fly by the seat of their pants.

I have encouraged him to stay in closer contact with his sis and to try to lift some of the burden of her care off her. SIL is one of those 'angels on earth' who let nothing get to them. She sees the truth and the facts and still is amazingly patient and kind. She keeps DH from having a meltdown when he's spent time with his mom.

Sadly, since his mom is truly unable to change, he must be the one who does. We talk about this and he just chooses to blame me for not going with him to be a 'buffer' to her anger. Being a buffer just meant she'd turn all her anger towards me and that was unacceptable.

Sounds like mom needs to be in a higher level of care than she is now. MIL should be in an ALF but would never go, so we all just are holding our colllective breaths for the next fall or situation she cannot handle.

The way we found a social worker was to contact the states Agency on Aging, at least that’s what it’s called in Moms state, looking for help getting care. They sent out a social worker to asses her needs and an overview of her assets, the SW assessed that yes Mom/we needed help at home and she likely would qualify for Medicaid so she did all of that initial paperwork and got things going. The best part was that services started rite away because she qualified for the program under a waiver until the Medicaid took over.

I totally know how frustrating it is but your story about the laundry made me giggle (in a commiserate sort of way), my Mom actually lives with my brother and this was a regular point of contention before we got some help, it only happens once in a great while now that we have someone 5 days a week. It was also a big point of independence struggle for Mom but she would do things like put dirty (urine soiled) laundry in the dryer and like your mom mixed dirty and clean stuff all the time. She just couldn’t track what was clean and what was dirty just as she couldn’t remember if things in the washer were clean or dry. Now the thought process that something isn’t dirty “just a little wet” after a leak through and just needs to be dried I can’t begin to explain but I do know that it makes sense in her broken mind. She also had/has a habit of hiding things so they can’t be seen and those surprises tucked away and wreaking…anyway having been very ill myself I can sort of relate to her feeling like she can do laundry today and then not being able to complete it because she bit off more than she could chew. But the rest I can’t relate to and simply have to remind myself and sometimes DB it’s her broken brain not something she can reason out or control at work. We make great attempts at stepping back, taking a deep breath or three and trying to find the humor in it. Yes it means more work for you but as you rehash that yellow summer dress chuckle to yourself “what in the world was she thinking”, it’s amazing how much the presentation can change your mood, the same thought can be applied with anger but what does that accomplish other than putting you in a bad mood and helping you stew about it longer?

I can tell you from experience that approaching a person with cognitive issues, especially dementia, with anger about something they did trying to do something “normal” is going to do nothing but make matters worse for both of you. Approaching them with laughter and saying “did you know you mixed clean clothes with dirty”? “what on earth were you thinking”? Because really it is hysterical when you think about it or at least eventually when you tell the story. Don’t laugh at your loved one laugh with them if you can. I was going to say your mom can’t understand that she made more work for you or that she did something wrong after doing something she has been doing for 70+ years but your moms come back was perfect, sorry. The fact that she is aware of and accepts her dementia is huge so you might be able to get away with notes around the washer and dryer or systems that make her feel she can be part of it when the thought hits her. Taking the laundry out of the hamper and dividing it for instance or just letting you know she’s going to start the laundry so you have a heads up and can do it with her.

I know you were just venting really and in the end I really do feel your pain as well as the immediate anger! Enough that I had a chuckle reading your account of the scene that has played out more than once in our house!

While I understand you are venting, I encourage you to reach out to friends, networks in your community (church, meet up groups), and perhaps short term therapy to get you through this difficult time.

She will likely not change.
You will need to adjust how you think and follow-up / changing your behavior.

Perhaps time outs are good - stop and meditate for 5 minutes. Or just stop and think of something that brings you joy.

Being compassionate to another starts with self-compassion.
Next time you are activated by her, count to 10 - or better yet, 50, before you speak. Take a few deep breaths - the belly ones, deep.

You need to learn to shift out of these places for your own self / sanity and peace of mind, and overall physical health.

Get a massage, buy yourself a bouquet of flowers.
Vent in a journal.

She will / may do all kinds of (new) things you don't like or know how to handle.
Read up on Lewy Body disease so you understand her better. She likely certainly isn't 'doing whatever she is doing' to upset you. She cannot help it.
When you shift to compassion for her / her disease / it will shift back to you so you are more centered, calm, understanding.

Gena / Touch Matters

Its time to "Mom proof" your home if you intend to keep on.

Lock up or disable the washer. Ditto for other appliances. There are childproofing devices you can get for washers, dishwashers and the like.

To whom did mom give her money? Why does that mean YOU have to care for her?

Unless she gave the money to you, it seems like the folks who got the funds are the ones who should be on the hook here.

Your Mom has no idea why she does what she does. And me, patience is not one of my virtues. I smacked my Moms hand one time for continuing to touch something I kept telling her not to. Talk about guilt.

I am a "everything has its place" person. I like order and boundaries. Rules are made for a reason. So the unpredictability of Dementia drove me crazy. Yes, I knew she couldn't help it but it still drove me crazy.

You cannot work from home and keep an eye on Mom. How did she give her assets away? Sell a house and give her children the proceeds? Get scammed? When scammed you file a police report so its on record. Mom giving away assets does not mean you need to wait 5 years.

There is a formula Medicaid uses for penalties and it depends on how much money is involved and to how long the penalty lasts. You need to apply for Medicaid and be honest. If there is a penalty, lets say a year, you care for Mom for that year or pay for her care. When the penalty is met she can then go on Medicaid.

You really need to talk to a Medicaid caseworker. You may have options like a board and care where they will take what she gets in SS and pension.

I remember when my mom was going through those stages, how I wish I knew what this disease was doing to her brain, I would have been more understanding and not get "pissed off" so much.

My mom is late stages lewy bodies dementia. She is only a shell of herself. However, she shows flashes of herself here and there when she was "normal" then goes back to her empty shell she resides in 90 percent of the time.

What I'm saying is. Take a deep breath, understand, she's not as sharp as you, as a matter of fact, she really has an issue that complicates everything your mom wish she could do that you do without thinking twice about it . Your mom can't and won't further down the road. She is still processing tho, that's good but the blank part of her Brain LBD is causing the confusion in her and you having to do laundry again..