My husband, 76, has dementia. I am his caregiver, 74. He has started removing his diaper and wants to go bare, but he is incontinent. Advice?

If you file for Medicaid, you will be considered the “Community Spouse “ and you will not be left homeless. You won’t live “high off the hog”, but they will leave you with enough to live on.

It sounds like your husband has the potential for violence toward you. No one should have to live in fear like you must be doing. Quite honestly, you cannot force him to wear incontinence briefs. If you have called them “diapers” to his face, he is resisting partly because diapers are for babies. What he is doing is not sanitary and since you’ve already slipped and fallen in a pee puddle, it’s downright dangerous. God forbid, but what would happen to him if you should become incapacitated?

Why do you think a social social worker would force his removal? Are there other things going on you didn't mention? Does his doctor feel he shouldn’t be at home? Maybe the doctor sees his potential for violence and is worried about your safety?

Tomorrow, call your local Area Agency on Aging and ask for help and advice.

I think a social worker might want his removal because there are times that things are unsanitary. There is no way to avoid that sometimes. My sister in law was seen with stool on her leg and immediately was moved to a nursing home. I don't want that. I love my husband and want to take care of him just as long as I can. I am not afraid of him. He is so fragile it is a question of who could push who over first. I have a friend who is a social worker and she said that is always the possibility if the house smells and was seen with a diaper on the floor or a puddle or worse. He has been wearing diapers for over a year and this is a recent occurence that he wants to take it off. Although he is brain damaged from meningitis instead of having alzheimers by the alzheimers scare of 7 stages he is in #6 and has moved very quickly through the past couple of stages. I mean in the past 6 months. We live in a house 3 miles from our daughter and I would like to stay here as long as possible. I just want to get that diaper back on him. I will try to think of something else to call it. And yes I did get some plastic
pants to go over the diaper and I call them panties so maybe that is what started this. Thank you for the idea. I will try to think of another word for these things.

It's a very good idea to change the words for his continence briefs. If he still won't co-operate, it might help to tell him that if he continues to soil the house he will have to go into a facility. You can say that you are at risk legally, and that the social worker will take him away whether he likes it or not. I understand that you say the finances don't make that possible, but there is no need to explain that to him. You probably don't like the idea of telling lies, but you have to find a way to change what is going on. It might be a good idea to investigate the 'community spouse' options in Medicaid, firstly so that you can be convincing if he argues, and secondly because it really might come to that.

Hi - My mother and I care for my father, who is rapidly declining and becoming incontinent. We are new to the “adult product” situation as well. A person in the home care industry called it that - “the product” - and it seemed so dignified to me.

Because of prostate issues and serious misjudgment about when and where to pee, we’ve been trying to encourage him to go in the Depends if he’s not sure he’ll make it to the toilet. We keep it light, and I’ve gotten in the habit of calling them “astronaut underwear.” However, when we had an incident where he had fallen in the toilet but had defecate. I couldn't get him off the floor, so I calmly said “it’s a diaper. Please use it. I’ll give you some privacy.

Since then, he’s been clear on the what and why. Mostly. We’re worried, too, and it’s disheartening. But trickery seems to be the way.

I would suggest that he wear sweat pants and sweat shirts or polo shirts with the two sewn together with a zipper in the back of the shirt. This would prevent him from taking the diaper off. People also do this when the person would play with their poo when incontinent. I would also see a psychiatrist for medication to help with the combativeness.

I had a similar situation with my husband. I tried several things, I picked up shorts with draw strings and put them on backwards and tied them in the back with a double knot. The thing that worked she best was to take duck tape being careful to come as close to the top without touching the skin. My husband was about stage 6 with Alzheimer’s and couldn’t do much for himself, he is now in the nursing home and bedridden. I had to tell him that if he didn’t cooperate I would have to move him to somewhere that could take care of him. After a week in the hospital with a UTI he went to rehab and from there to a nursing home. He is now bedridden and can do nothing for himself. Not sure what stage he is in now. My heart goes out to you, this I not an easy road either at home or in the nursing home. I miss my husband of 50 years. He still knows me and when I tell him that I love him he tells me he loves me too, can’t really understand much of anything else he says. Stay strong and know you are not alone.

I get the impression that you do not want your husband to go into any care facility because he is your husband no matter his problems and at the current level of problems you feel you are happy to cope in general. So accepting that and the fact the main problem is the incontinence then the question arises, does he want to wear nothing or does he just not want to wear the incontinence diapers. I don't know what you have available in the US but in the UK we have an option of using proper washable underwear with built in incontinence dealing with layers. For double incontinence one can always put a sheet of paper roll inside so that faeces can be flushed before washing, just for urine incontinence one simple washes them. There is really no difference to look at between normal underwear and these. I am sure you would be able to find under washable incontinence wear online and he may be more inclined to use these rather than the "ugly" disposables with their reminder of loss of control.

Try using adult pull-ups. They come in different colors and he may think they are regular underwear. You can also try jumpsuits which has a zipper on the back.
www.buckandbuck.com. This site sells all kinds of adult adaptive clothing. I don't believe there is any magic pill to correct disrobing behaviors.

Maybe the laws are different state to state. Our advisers from PA; lawyer, Area agency on Aging and financial told us they can not take your home as long as the spouse is living there. Area Agency on Aging can help. Also the Facility is a good source. Not the Doctor

If your husband has progressed through a couple stages of Alzheimer's-like symptoms in only a couple months, it is likely that he'll progress through additional stages fairly rapidly, too. Therefore, it would probably be of benefit to start planning now for what is likely to be a need to obtain care for him in a facility quite soon. Unfortunately, there may be no other way to keep both of you safe much longer--he may actually become violent, or you may injure yourself trying to clean up after him. Sorry to be unable to be more encouraging...

Buy men’s pull-ups since he’s able to stand, he can wear them.

I took classes for caregivers and learned that as the dementia progresses, the LO will go back to behaviors from their immature childhood. They lose all self control. It is not stubborn but probably what he did as a young child. I wish I had a solution. You need some respite. Good luck.

Since he's threatened to kill you, perhaps you should get APS involved.

If possible, it's now time for him to go to a memory care facility. My dad cared for my mom until she became incontinent. Then it was just too much for him. She lived comfortably at a very nice new Alzheimer's facility until she died 6 months later. It was the first one ever built here. He would go visit her almost every day.
I really hope you have an alternative to caring for him by yourself, now, because he is likely nearing the end . If possible even some in home caregivers would really help you.

I applaud your dedication to your husband. However, I believe you need some professional support to address the safety concern for you both (especially with the falls) and the threats! The inability of your husband to comprehend why he needs incontinence care will NOT improve, and often the verbal/ physical abuse increase with the deterioration of mental status.

My father and I tried to keep my Mom at home....but she hit, threw things, tried to slam the door on my arm, would curse at us, threaten to call the police, lock herself in the bathroom, etc. At that time, she was not incontinent.

We had her hospitalized for a test to see if she had something else going on that caused these behaviors (she was being tested for Normal Pressure Hydrocephalus at the request of her neurologist). It was determined that she did not have anything other than progressive dementia, and she was a handful for the hospital staff to handle. The hospital told me "do not take her home, and take her straight to a memory care facility where they can better manage her. It is not safe for her or you to have her in the house". So we did. She soon became incontinent, and the staff would find her undressed in her room, smearing excrement on the wall. She would lash out at them, and the strength of a 135lb. woman is immense when her mind "flipped" into one of these rages. It was unpredictable.....yet more than half the time, she was a sweet and gentle as a kitten. Like the nursery rhyme says..."When she was good, she was very, very good. But when she was bad she was horrid." What we had to realize was that this was NOT my Mom or my Dad's wife we were seeing in these behaviors. She would never, ever had acted or spoken this way. But we were seeing the manifestations of the disease....and that cannot be reasoned with, is never predictable, and can be dangerous.

You will not be able to and can not change your husband's behavior....He is the only one that can alter the way he behaves, and he is not capable of doing so. Unfortunately, his behaviors make it impossible for you to adapt .....they are not conducive to a safe, healthy environment for either of you, or anyone entering your home. What if Grandchildren visited and encountered his behaviors? Your husband would never have wanted you or other family and friends to see him this way.

What if you fell and broke a hip? That would be tragic for you both in so many ways. My thoughts would be to consult an elder care attorney to assist with putting together a life care plan for both you and your husband (possibly engaging a social worker) and making a financial plan to secure the assets you have. Our attorney secured my Dad's home, and now Mom is on Medicaid. It simply takes planning in advance...and they can help you protect assets for yourself! It sounds as if he will require transfer to another living situation. I would not initially contact individual living facilities directly because they will try to entice you to engage with them as they are for-profit institutions.

The long-term care facility in which my Mom resides has a memory care unit, and they accept medicaid. Perhaps you can work to get him in a safe facility under Medicaid....but you will need guidance from a professional to explore these options and apply if you choose to do so. These facilities are few, and they only have limited space.

Sometimes the "tough love" is the hardest, but keeping both of you safe is imperative! Please take steps now before you get in a crisis situation and have to do something urgently.

I was in the same situation two years ago and struggled to find solutions. We tried a "condom catheter," three different kinds in sequence, but he ripped all of them off. In the end, I bought sets of one-piece pajamas or jumpsuits that zip in the back (from the Buck and Buck Catalog) that he can't remove on his own, and it worked. I also had to hire overnight caregivers a few nights a week, so I could get some sleep myself. Also installed a hospital bed with side rails, plus an additional set of rails, plus a bed alarm, so he wouldn't get up at night and fall, after several falls with calls the the fire dept. to get him up, and many trips to the ER for head injuries. It has been quite a challenge, but with advancing dementia he has luckily become more passive and now accepts wearing his Depends with a pair of shorts over them. Which is lucky, since the back-zip pajamas are pretty warm in the summer. But eventually he, and your husband, will probably need to move to a facility. Caring for them at home may become impossible, and we are getting older, too!

Put him in a jumpsuit with a zipper on the back side.