My husband is incontinent and seems to get a kick out of making it more difficult for me to clean up.

What is stopping you from placing him in a facility? Do you need some advice on how to go about it? Splitting finances? Please get yourself out of this situation.

I feel that some or many people have a little mean streak inside of them. That they control but sneaks out from time to time, due to resentment or just plan boardom, and dementia can enhance it. , just a thought on the subject

Thanks to all the hilarious jesters who interspersed in Sharon's heartbreaking situation. I needed the laugh tonight. I bet she did too.

If I don't laugh about care giving sh*t sometimes, I'll start crying...and possibly never stop.
OP is a cancer survivor and I want her to be free. Starting with your own bedroom and a good lock. Put a hidden camera in his room.

Next, see a lawyer for how to split assets for MediCaid, so you can place him and MediCaid pays. You get to stay in the house and keep your car. You are a cancer survivor and 10 yrs younger, so I know you have the determination!

You have a hot mess on your hands, that you didn't cause and can't fix. He sounds extremely resentful and cruel. He could very well enjoy watching you suffer and holding such (literally) disgusting power over you.

You have been given a Second Chance. His life is in a ditch and won't get any better. The STRESS alone of taking care of him will soon kill you, or worse, bring that cancer back.
Then he still gets placed!

SharonSharon,
"Am I crazy or could it somehow be deliberate? I have found out about so many lies he told me, times he gaslighted me, and according to him, got a kick out of getting away with it."

The "LIES" he has talked about happening in the past, telling you now, could just as likely be new lies (or confabulation) about it happening at all.

You may not be crazy, but listening to him and believing it could drive you crazy, and what sends you off the deep end. Listen to other's good advice.
Try some separation between the beds, between the rooms, and a respite time for you to get away.

You can obtain an assessment from a geriatric care manager to help you make the tough decisions for when you can no longer care for him by yourself.
Bringing in caregiver help, or placing him-is a tough decision. Don't suffer it out on your own.

His behaviors could be deliberate, but from a broken brain.

You are not obligated to do any of this on your own. No one can caregive very long for 24/7, it is not sustainable.

Yes. Your husband's behavior can absolutely be deliberate. I was an in-home caregiver for a long time (25 years) and have seen exactly this kind of behavior many times and it was absolutely deliberate.

I am reminded of a client I had some years ago. An elderly lady with what was diagnosed as mild to moderate dementia who wore diapers. She lived with her son and DIL who she detested with all her heart.

The son and DIL both worked full-time jobs so I worked for her during the day. This woman would once or twice pee during the day but would not be toileted to crap. She would fart up a storm and I knew she had to go but she would hold it. Not out of embarrassment because she didn't want me helping her. No, that was not the reason.

The reason was that she saved it for her DIL who she hated. The second I set my foot outside the door when her DIL pulled in the driveway she'd let that load go. Then she'd laugh about it because her DIL had to clean everything up.

I told the DIL that she should leave her sitting in it until her husband got home from work and he could start cleaning her. Of course he used the excuse that so many men play to get out of caregiving. The claiming that he "just couldn't" change his mother. The ended up placing the mother in AL instead of placing their marriage in the divorce court.

I don't know if you have homecare coming. If not, then get some coming.
The next time your husband does something he thinks is "cute" or gets a "kick" out of involving his own incontinence, leave him sitting in it. Do not clean it up until you're damn good and ready to. Or not at all if you don't want to.

Move your bed to a different room and put a lock on the door if needs be to kep him out. You should have your own space that is not stained and stinking of piss and sh*t.

I'll level with you here. In my long experience with caregiving I found when piss and sh*t becomes a game or something of interest to the person you're a caregiver to, they should be placed in a care facility.

You should really look at a few places for your husband.

You pushed 2 beds together for WHAT PURPOSE????????????

So now you have 2 beds to clean when he does this. Ugh.
I'll put up with a lot, but if this were my DH? I would have him placed ASAP.

Sadly, it seems as if the ability to act 'normally' is no longer a part of his life. And it's going to get worse, even though you think you can help him--a broken brain is not going to retain new information and behave better.

I'm so sorry for this.

He needs to be in a facility right freaking now.

Moving to another bedroom simply means he won't be dropping a load in front of you anymore. But the mess will still be waiting for you the next morning. That's hardly an improvement.

Get ye to another bedroom or at the very least move the beds apart.
Seriously think about placing him in Memory Care. His care is simply more than 1 person can manage.
I often say when it is no longer safe to care for someone at home it is time to look into getting caregivers that will help or looking into Memory Care. When I say "safe" I am not just talking about physical safety but mental and emotional safety.

While I do not think he is doing these things on "purpose" or "deliberate" I think he is just being who or what he is.
With dementia the normal filters we have that allow us to live in "polite" society are dropped. Since he seems to have always done things to you and seemed pleased with himself, he is doing the same thing he just is not as "sneaky" about it but he is still pleased that he is following the same pattern.

Get your own room. Even if you have a den and convert it to a bedroom, anything is better than waking up and having to clean up feces, wash bed linens and on top of everything else, issue care to the person.

It is time for placement for not only your husband, but for your own health. If not long term placement, look into respite care if these services are still being offered. So much has changed over the past years, my suggestions may be a little dated.

I always believe in telling elders that the next time it happens, they’re going to a home. A lot of dementia pts due process some boundaries, after all.

They become like children. I agree, get ur own bedroom and a lock on the door. Get a baby monitor.

Caring for someone takes all the energy of a well person. Stress could bring back ur cancer. I would see an elder lawyer and have your assets split. DHs split would go towards his care. When almost gone you apply for Medicaid. You remain in ur home, get enough of your monthly income to live on and have a car.

You are acting as though your husband is in control of his behavior.
He isn't.
This is sad and hard, but I think the time is drawing close that you need to consider the possibility of placement.
There is no intent here to torment you.
This is a part of his disease.
You have wonderful memories. But that man is disappearing. Only you can decide when this can no longer be done for the sake of a few good moments.

I am so very sorry.

Your husband has dementia(per your profile) and his brain is now forever broken, so I'm not sure I believe that he is doing any of this on purpose.
To me it just sounds like his care has gotten to be too much for you and placement in the appropriate facility should be your next step, as this is NOT going to get any better, or easier.
So let those that are trained in this kind of care now take over, so you can get back to just being his wife and advocate.

You say that you "had a great marriage for at least the first 20 years" - though it isn't clear if the lies, the gaslighting and the "kick out of getting away with it" had started while you were still looking on the bright side.

Let me point out that almost everyone who ever got divorced started off in a happy marriage. That doesn't mean it trapped them when it went bad.

Deliberate or not , you need your own bed . In general , after reading your profile , this is too much for you to handle at home . I also think you know this already, but he needs memory care, or SNF on Medicaid . An eldercare lawyer can help you with how assets are split so you can stay in your home.

Sorry you are going through this.

Have you chosen an assisted living/nursing home yet?

I would call a dementia helpline & discuss this behaviour. See if they can advice anything useful to you.

Does he seem to enjoy the 'reaction' from you? I have seen this. If so, clean up with no words, no fuss, no attention or 'pay'off'.

Separate bedrooms & a lock for yours sounds reasonble to me.

I’m very sorry that you are going through this. Please take care of yourself.

Consider placing your husband in a facility. Sending you lots of hugs.

OMG you poor thing! I can't believe he pooped in the bed. Just so so gross. And was it deliberate?? Who knows? Given your description of his behavior of getting lost, etc it seems to me that his dementia is fairly advanced.

I guess sleeping in the recliner is better than in bed with someone with his level of dementia. Do you have any help? If not, it is high time you got some. If you plan on keeping him home, you need help, especially given your own health issues. You matter too and you have to put your own health and well being first.

Best of luck.

I'm so sorry this is happening. Your husband is very sick, and he will not get better, only worse. Whatever the evaluations told you in the past isn't important to the solution you need now. You see and experience his behavior. It's beyond what you can manage at home. Get the beds apart! You at least deserve a bed to sleep in, for heaven's sake.

The containment suit is only a stopgap measure. He needs to be placed, so move ahead with that. Inform his PCP what's going on. Ask for help with placement. The sooner, the better.

Once he's placed, you'll have the house to yourself and can visit husband when and if you wish. If not, that's okay too. You've been through so much that you deserve a break. Please take care of yourself.

Please move away from sharing a bedroom with him, that’s just intolerable. Don’t ask his opinion, just do it. I read your profile and am glad a scan is coming, you definitely need a better, fuller picture of his medical situation. Have you looked into any possible services he qualifies for? It certainly sounds like his care is rapidly becoming too much for a home setting and for you to handle on your own. Remember, you’re no good to him as an exhausted, burned out caregiver. I hope you can soon make changes for you both

I agree with @Dawn88 it is time for him to go into a facility or you just might be going out in a pine box dealing with him. As for the other suggestions to sleep in a spare room I dont think that is going to work with his messed up brain but i could be wrong.

Also a great answer. Thank-you.

Also a great suggestion. Thank-you.

Your poor thing. Set up your spare bedroom and get a lock on the door. Tell him you aren't sleeping together anymore after the mess he made. It would have taken him effort to do it.

I know we get told to "blame the dementia, not the person." I'm not buying it.

After all you have gone through with cancer, him creating toxic waste for you to clean up is torture that you don't deserve. I'd be very tempted to whack him with his cane!

Time to seriously consider placement. You fought to survive and he is so mean and disgusting to you now? He is putting your health at risk with e.coli or worse. Sure you had fun times long ago, but this is pure nastiness you don't deserve. What happens if you die first? It's time to stop the torture.

Get him an Alzheimer's anti strip suit and insist he sleep in it. Put a disposable brief on him first, the suit, and no more of this nonsense will happen. Then move those beds apart or go set up your new bedroom in the spare room, where you can sleep alone in peace. Hubbys disease has progressed beyond the point where can be sharing a bed anymore. Whether he's doing these things intentionally or not, who knows, but you have to find a way to stop it!

If this arrangement doesn't work for him, or if this situation becomes too much to handle (which sounds like it already has), place him in Memory Care Assisted Living or Skilled Nursing care with Medicaid.

https://www.amazon.com/Clothing-Alzheimers-Dementia-Onesie-Jumpsuit/dp/B0851XGHXX/ref=sr_1_3?dib=eyJ2IjoiMSJ9.0-z6gAoklRPV_9nGXeWMJQFZQvmIGqzjBvSByTT1xc6n_LXvkF7x8Abl5e7y0vIcLprn5eZk901IFGHlgiV0hTamKzm3EAiujaY_QGSBHzc._aU8T2j2yva0jimuKgNqKdn6lVQ97BpbLlQ7PgIMZjY&dib_tag=se&keywords=Alzheimers+anti+strip+suit&qid=1709172424&sr=8-3

Best of luck with a difficult situation.

Do you have a guest bedroom? I’d start sleeping in there and put a lock on the door so he can’t go in and poop.