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Infinity, depending on how severe your mom's dementia is, this is part and parcel of the deal. They forget how to do things, forget that certain sensations mean they have to use the restroom, and sometimes even lose the sensation of "needing to go".
Since she is already using protective garments (diapers), it sounds like her dementia is relatively advanced. My own mother's dementia was considered mid-range, and she did the same thing.
Trust me, many of us have been there - we understand. Feel free to come back and post more info about your mom's situation - you don't mention if she's living with you, you're living with her, if she's in a nursing home or assisted living - so it's a little hard to give advice, but please know we understand, because we've all been there, to some extent.
Your profile says she is living at home --- yours or hers? Is someone in the home around the clock? I had my Mom in Memory care (MC) and the aides there brought each resident to the bathroom on a regular basis. Upon arising, before lunch, before dinner and before bedtime. AND of course, as needed. Sometimes this helps regulate the resident. Can you try that as well?
I know it's hard, but that's what the diaper is for. Be grateful she's not defecating all over the house and smearing it around. It could always be worse. God bless, hang in there.
Pepsee is right. It could be SO much worse. Unfortunately and as distasteful as it is, changing diapers and all that involves is part of the “caregiving experience”. Even home health aides can’t help with that unless they’re 24/7. If you don’t already have them, get surgical gloves. They’re sold by the box in just about every drug store. Wear them whenever dealing with her. Keep a tub with wipes, diaper cream, soap, washcloths and towels in a convenient place.
You can make caregiving easier for her. Always keep in mind that she can’t help it and if she had s choice, she’d be using the toilet as she always has.
It's not just happening in your world, but every one's. My mil who has lived with us since November 2017 does this and more. She was also having "accidents" when she was living on her own in her own home. Sometimes she takes her pants down including her Depends and poos on the chair or the tv table or wherever it is convenient for her. No, this does not make me happy. I have ocd and I am also on disability for a brain stem issue so there is a lot of things going on. But, you are not alone. I have no answers for you. We are all trying to get through this. And it seems that every day or every minute is different. Hang in there! I use this site to vent.
Mom has started to do this more and more. She normally would want to go to the bathroom often. The other day, she wanted to go and when we got in the bathroom, she said that she already went and "Isn't that something?".. (She has aphasia and hardly ever says anything that makes sense.) But, what I noticed in the past few weeks is that she won't even try to go when she sits on the toilet, even pooing. She just sits there. I don't know what to expect with all this. Is this a late-stage dementia thing?
Mapotter - yes, this is definitely a dementia thing - not necessarily late-stage, though. It varies from one person to the next and there's really no rhyme nor reason to it. My mother was considered to have mid-stage dementia - she would forget how to do things, forget names, forget who lived where or who this or that child belonged to - but the she also had the loss of continence that sometimes seemed almost intentional. I could be sitting with her, visiting, and she would say she needed to go to the bathroom. I wasn't allowed to help her (NH rules), so we would ring for a CNA to help. Because they were chronically short-staffed, it could be 30 minutes or more before they'd get to her - but even so, within 5 minutes of ringing the bell, Mom would be straining and pushing, raising up slightly on her chair - filling that diaper. It was pretty uncomfortable to sit there and watch her do that, knowing that I couldn't help her get to the bathroom and she apparently couldn't control the impulse to go. At first, I thought she was doing it intentionally, but then after I asked her to wait for the CNA to help her a couple of times, and she gave me that blank, dementia stare while still defecating into the diaper (you know that stare if you've seen it), I knew that she truly didn't really understand what she was doing and why it was a problem.
Susan, thank you for the information. I want so much to understand all of this. I have seen a blank stare. I say things and she doesn't seem to "get it." I wondered if it was her hearing aids, but I turned them up and nothing changes. I was talking to her in the car today and she didn't react, she just stared straight ahead. I even called her name (Maybe I should try to call her by her first name, instead of "Mom"... just to see if I get a reaction...). I touched her to see if I could at least get her to blink. Nothing. It is both perplexing and frustrating at the same time... I keep reading all I can, but I do understand that it is different for everyone. I try to compare Mom to my girlfriend who died recently. I see some similarities at times, but Mom is not nearly as bad as my friend was.
Mapotter do you think Mom could be having what are called "Absence seizures" A suffered will typically do what Mom does just stare into space and not respond. If you think it's worthwhile talk to the Dr about getting her tested for that as there are medications that might help. I wouldn't put her through a lot of tests if you think it would be distressing for her or she could not benefit from treatment. It is just a thought.
Veronica, I will look up the "Absence seizure." I don't think her doctor will do any tests, though. He is of the mindset that at 94, we should just let her "go"...and tells me no one will treat her anyway. But, he did do blood work the other day when I took her to an appointment to get V.A. papers signed, just to see how her thyroid, kidneys, and liver were. Her results came back "better than they have every been..." My brother is thinking that one of her hearing aides is not working well enough... Something else to look into.
Lostinthemix, we haven't gotten the blank stare for the pills yet...:-) But, she does push the little cup of pills towards someone else...or lays them out and wraps them in a napkin.... She is refusing to take them. My brother forces her -- puts them in her mouth (Makes me cringe!) and forces her to wash them down with water. She then spits them out. I told my brother that it isn't worth the fight. He disagrees (thinking it is prolonging her life...). Of course, he (at 71) does nothing to try to prolong his life...
Wow, today was the first time I ever saw the “blank stare”. Mom got a very strange look I’d never seen before when the nurse tried to give her meds. She had to keep telling her to keep them in her mouth and swallow, and she finally got through to her and she swallowed. The nurse said that Mom gives her that look once in a while right before spitting them out. It was very strange. I wonder why the med dispensing triggers it.
That flat affect to the face, the blank stare - that's what first triggered thoughts that Mom had dementia. She would just completely zone out while you were talking to her, like she wasn't there. Mom was a very animated, talkative person all her life, even as she got older, and that completely blank expression was a major red flag. No one really knows what's going on in their minds, but you can almost see the internal struggle and confusion going on - someone outside their body is telling them to do something, but inside their body is complete chaos and confusion, resulting in total inaction - they just sit there and stare because the dementia brain is truly "broken" and doesn't comprehend what's being said to them.
Have you ever seen the movie "Awakenings" with Robin Williams? It's based on a true story of people suffering from diseases that cause tics - some had Parkinsons, some had Polio as children -but the common thing was the tics they had. After many years of tics, they became completely catatonic - like statues. The doctor's theory was that all these tics, combined together, created such chaos in their brain that they simply froze in place, unable to move. I have a feeling that the blank dementia stare is something similar. The brain, overwhelmed with signals from the body and external sources, and unable to comprehend it, just kind of shuts down and doesn't give back any info at all - like "swallow" - "move your arm" - "stand up" - so they just stare, because that's all they can do in that moment.
Susan, hmm, this blank stare discussion is very interesting, and sorry to hijack the original question. I never knew this was “thing” until I ran across it in this discussion. When I witnessed my first blank stare yesterday, Mom had been napping, and the nurse woke her up to give her meds. I wonder if that sudden awakening, then immediately being asked to open her mouth, although done very kindly, may have been too much for her sleepy brain to process. The nurse said she recognizes the stare now (she calls it The Look) and has to really try to administer the meds when that’s happening. I think I might suggest that if moms napping, she awakens her a few minutes before trying next time and see how it goes. It’s pretty important to get those meds down and not spit out...they can’t/won’t try a 2nd time.
Mapotter, maybe your Moms meds could be ground and given in a spoon of pudding or ice cream, then washed down with a sip of tea or milk. It’s easier than asking them to swallow whole pills. You have to make sure that the specific pills should be ground, for instance Moms namenda time release capsule must be opened and sprinkled, not ground up.
rocketjcat, putting the pills in pudding is a good idea. We have done that before. I guess I just don't always think of it. The two evening prescription pills she has to take are so small (no tiny!) (and the lowest dosage possible) -- one is for cholesterol and the other is for blood pressure. They will work if you put them in food. (She actually tries to chew them sometimes.) The Senna Plus cannot be ground up or even softened in liquid. They are a hard as rocks! (She used to take MiraLax, but that wasn't working. So, the doctor recommended Senna Plus.) I am giving her prune juice when she doesn't take them.
I see where she refused her meds this morning, too, when the aide was here. Looks like Mom put food into the little medicine cup, along with the pills. :-/ She is pretty out of it this morning...
Hmm... I started to wonder, when they refuse meds, if they really know what is going on -- meaning that they know things are not right and they want it to be over?? Mom knows when we add meds. She never wanted to take anything that she didn't feel she needed or more like wanted to take.... For years she wouldn't take anything for high cholesterol or hypothyroidism. When I started taking her to the doctor (after she stopped driving 3 years ago), her cardiologist had a note in her chart saying that she refused treatment for high cholesterol. We made her take both at the end of 2016. She had a fit. But the damage to her was already done by that time. She continues to count how many pills we are giving her....
Susan, been there.... She is supposed to get 2 at night. But I try to regulate it and give her only one sometimes. Then I have to give her the max (3, 2-times per day). She gets impacted quickly... It's a roller coaster...
Mapotter - sorry to hear that. I completely understand where you're coming from there. My mother was regular her whole life, as long as she had a bowl of raisin bran in the morning, or some other high-fiber cereal. That's all it took for her to stay regular. I stated this to the NH, but somehow it got lost in the shuffle, and they were just giving her eggs and toast, etc for breakfast - no fruit, no cereal. Well, of course, she got constipated and couldn't go for a few days, so they started the Senna - no notice to me at all, the medical POA. I had no idea she was on it until we took a day trip with her several hundred miles in duration, to one of her favorite locations. We stopped for a restroom break, and when mom went to get up out of her seat in the van, she said, "Uh oh!" and there was a horrendous noise and smell - you can just about guess. I had brought extra clothing, wipes, extra adult diapers, etc - but omg....it was horrible. My sister was with me and did the largest amount of cleanup, bless her - I felt terrible for her. I offered to do it, because I was used to it - but she wanted to do it. I think she regretted that later.
Went back to the NH and asked them if they had her on a laxative - yup, SIX SENNA TABS A DAY. And they had given them to her right before we left, knowing full well she was going to be in a vehicle for a large part of the day. "You can always tell us not to give them to her if you're taking her out!" - right - but I didn't even know she was on them, because you didn't tell me!! I really don't miss those days.
Oh my, Susan. Even the short time Mom was in a NH for respite care, the communication was terrible.... They didn't do what I asked them to do.
I tried to get Mom to go to the bathroom today, knowing that the hospice aide said she hadn't finished going, but wanted to get up off the toilet. That was 10:00. Mom slept all day. It was after 5 when I tried to walk her to the bathroom. She wanted no parts of it and told me that I was a pain in the ***. I have been overly sensitive this week... :-/
I thank you all for ta king the time to comment on my post. I "won" my mom in a lengthy and nasty court battle where I spent $6000+ on lawyer fees to prove my sister had extorted $126,000 from her bank account and destroyed her house and...overdosed mom everyday on fentanyl! 6 months later things are very different, mom is opiate free but the dementia worsens everyday. She only uses the toilet in her chair, and at the advice of her doctor I have set the timer every 2 hours. Most of the time she absolutely refuses to get up and go. When I can convince her togo, she says "where do you want me?" I tell her to go to the bathroom and she gives me that blank, almost frightened and certainly confused stare. I am a widower, so I moved in her house to keep her home and out of a care facility. It often makes me so sad to see her like this! Often I have to totally scrub her leather recliner and her afterwards because since she is off opiates, her bowels are no longer constipated but loose. Mom is sleeping probably 18 hours a day. She is no longer willing to get out of the chair and accompany me on trips to the store. She does stay up, roam the house for snacks (that she hides in the chair and they get pooed and peed on!) ... but I keep the lights on for her and waken several times to lead her back into her chair and replace her oxygen cannula as she has severe COPD. It is a very very lonely thing to do, as other family members have a life. My life is revolved in mom, 24-7. I get depressed and lonely, but do my best, and always remember the fantastic mother she used to be for me. This is the full circle of life, sad but true.
((Hugs)) to you, Infinity. Your mom's story could almost be my mom's, with the exception that I didn't have to go to court to become her caregiver and there was no drugging involved - but the unwillingness to get up and use the bathroom, the messes from incontinence, the food sneaking and hoarding...and the loneliness. I completely understand that. When I was caring for Mom, there simply was no time or room in my life for anything else. I ran my business from home and cared for Mom - that was it. I managed to sneak in one 4 day vacation to visit my son in another state, but I had to pay a caregiver to come in and take care of Mom, because none of the family members could/would do it.
Hang in there. The job is tough and thankless, but I do believe there's a reward waiting for us somewhere.
Shad, to be honest, I don't think it was intentional that they gave Mom the laxatives before our trip. They simply didn't think to look at the records long enough to realize she was going out that day. I had a pretty good working relationship with the nursing staff for the most part, and they were great about keeping me informed, once I let them know that I wanted to be informed of every medicine change. I still had to ask and remind them, but at least they gave me the info when I asked.
My Mom had her bathroom not ten feet away, straight ahead and forgot where it was. I even had a sign on the door. I had a little table in her room right out side the door. She was to call me when she felt she had to go. Well, this one time she didn't, thought the table was a toilet and went #2.
The first time I had to wash that comforter, it wouldn't go back on the bed.
You have to keep track of her bowel movements & kind of think for her or look for signs that she has to”go” like if she has stomach cramps or is passing gas....put her on toilet schedule also helps
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Since she is already using protective garments (diapers), it sounds like her dementia is relatively advanced. My own mother's dementia was considered mid-range, and she did the same thing.
Trust me, many of us have been there - we understand. Feel free to come back and post more info about your mom's situation - you don't mention if she's living with you, you're living with her, if she's in a nursing home or assisted living - so it's a little hard to give advice, but please know we understand, because we've all been there, to some extent.
You can make caregiving easier for her. Always keep in mind that she can’t help it and if she had s choice, she’d be using the toilet as she always has.
I wouldn't put her through a lot of tests if you think it would be distressing for her or she could not benefit from treatment. It is just a thought.
Lostinthemix, we haven't gotten the blank stare for the pills yet...:-) But, she does push the little cup of pills towards someone else...or lays them out and wraps them in a napkin.... She is refusing to take them. My brother forces her -- puts them in her mouth (Makes me cringe!) and forces her to wash them down with water. She then spits them out. I told my brother that it isn't worth the fight. He disagrees (thinking it is prolonging her life...). Of course, he (at 71) does nothing to try to prolong his life...
Have you ever seen the movie "Awakenings" with Robin Williams? It's based on a true story of people suffering from diseases that cause tics - some had Parkinsons, some had Polio as children -but the common thing was the tics they had. After many years of tics, they became completely catatonic - like statues. The doctor's theory was that all these tics, combined together, created such chaos in their brain that they simply froze in place, unable to move.
I have a feeling that the blank dementia stare is something similar. The brain, overwhelmed with signals from the body and external sources, and unable to comprehend it, just kind of shuts down and doesn't give back any info at all - like "swallow" - "move your arm" - "stand up" - so they just stare, because that's all they can do in that moment.
I see where she refused her meds this morning, too, when the aide was here. Looks like Mom put food into the little medicine cup, along with the pills. :-/ She is pretty out of it this morning...
Went back to the NH and asked them if they had her on a laxative - yup, SIX SENNA TABS A DAY. And they had given them to her right before we left, knowing full well she was going to be in a vehicle for a large part of the day. "You can always tell us not to give them to her if you're taking her out!" - right - but I didn't even know she was on them, because you didn't tell me!! I really don't miss those days.
I tried to get Mom to go to the bathroom today, knowing that the hospice aide said she hadn't finished going, but wanted to get up off the toilet. That was 10:00. Mom slept all day. It was after 5 when I tried to walk her to the bathroom. She wanted no parts of it and told me that I was a pain in the ***. I have been overly sensitive this week... :-/
NH staff probably shared a laugh after you left with your mom
Hang in there. The job is tough and thankless, but I do believe there's a reward waiting for us somewhere.
Maybe, but they should have mentioned to you they gave her this medicine and they had no idea when it would start to work
The first time I had to wash that comforter, it wouldn't go back on the bed.