He gets in my half of the bed and is incontinent there. We have two twins pushed together like a queen. Somehow today he managed to get a long fully formed bowel movement stuck between the two beds, soiling the sheets, the mattress protector, the comforter and the bed bases in both beds.
He gets directly in my way and sits down and refuses to get up from whatever I am in the process of cleaning. If I give him his cane and ask him to get up he screams and if he does get up his legs “give out” and he sits, lies on the floor and then pulls himself back up on whatever I am asking him to get off of.
I could just cry right now. He was sick but does anything to make it more messy, more difficult to clean up, and never says a thank you. He is just plain mean. The BM between the beds was a surprise after helping him wash, change, feed him, and cleaning the urine, feces and vomit that was visible.
I don’t see how it could be deliberate but this only seems to happen on days we have gotten washed, dressed, I have changed all the bedding and cleaned the floors.
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.
We had a great marriage for at least the first 20 years but that is getting to be a long time ago now. There are days still when we laugh and talk and enjoy day to day life together but a lot of the time my heart is just broken.
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.
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Best of luck with a difficult situation.
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.
And you are so right about the risk of illness. I have to be careful what I am exposed to. Since my mastectomy, IV chemo and radiation treatments I take an oral chemo drug twice a day to prevent it coming back.
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.
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.
Consider placing your husband in a facility. Sending you lots of hugs.
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.
Sorry you are going through this.
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.
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.
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.
You may be mistaken. The husband may very well be in control of his behavior. I've taken care of dementia clients for decades and have personally seen clients behave exactly like the OP's husband for one person but would not dare behave so with someone else.
Like the client who would call me after hours because she was having an "emergency". She would stage a fall then call crying and begging me to go to her house. Whenever I'd mention calling her daughter or an ambulance she'd get hysterical and beg me not to call her daughter. That's because she was acting. Maybe she wanted more attention. Maybe she was bored and this little game was exciting to her. Who knows. I called her daughter who was very upset though.
Sometimes, the person does know what they're doing and are careful about who they do it to.
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 know, you're absolutely right. Many, many dementia patients still do possess some boundaries. I think I've used the nursing home threat probably thousands of times. It works.
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.
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.
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.
Hahaha 😝, seriously, I love how you don’t beat around the bush and get right to the point!
We can always count on you for direct, no nonsense answers!
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.
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.
I know that this conversation is supposed to be serious, but olddude brought out my wicked sense of humor, and now your terminology, or description of your experiences in caregiving is pushing me over the edge of wickedness! 😁
Geeeez, when I read about your client “saving it” for her DIL, the first thing that came to my mind was that her crap was a cherished prize just for her DIL and I nearly choked on my coffee! LOL 😆
Oh, gosh! I just might be going to hell for my sick sense of humor! 😁😝😆😂🤣
"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.
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!