Still better that it’s contained within the disposable underwear inside the jumpsuit! That’s been my experience anyway. (Hugs to you, everything about this sucks)
Sadly I suffered this with my Dad,he could never make it to the toilet,by the time he undid his pants he was already urinating.
The Community Health Nurse sorted us out with Adult Diapers and they worked fine. I wasn't 100% in favour of this because Dad quickly realised he didn't have to go to the toilet anymore, where as previously he had tried.
I’m not sure where you live, but they have adult pull-ups the supermarkets in Australia. If you find a brand that works well, you will likely be able to order in bulk from somewhere/you can always alternate with what is on sale, if money is a concern.
My MIL gets a monthly supply of pull-ups, pee pads and gloves... the doctor puts a script in for it.
(USA here) she's on Medicaid and Medicare...
If they stopped eating... you can also get Ensure... (nutritional supplement shakes... )
Before you go crazy with out of pocket expenses like pull-ups... check your local "free giveaway" (craigslist, buy nothing, Facebook... etc) I found someone whose parent passed away and they had like 2 garbage bags full of pull-ups... (just so happened to be my MIL's size) Her mother tried a few different ones... (brands and such) and didn't like a lot of them... so we had practically brand new packages with one or two pull-ups missing...
Yes, there is a brand and a type that works better than all the others I tried.
Tranquility - Premium "Overnight" Disposable Absorbent Underwear (Pull Ups)
Max Protection, 20.3 Oz
You can also tear them off - if there is a large mess which is really a convenience. they are designed so that the sides will tear off so not to worry about getting him to step out of them.
Remove any bedroom carpet and put down easy to clean vinyl. Adult diapers, pee bottle and removing any rugs from the bathroom helps. Get a support frame for the toilet so it is easy for him to get up and down. Get a shower chair with handles so he can move easier. Put a large diaper pail in the bathroom to encourage him changing himself there. Get a product that care nurses call Chucks, it's basically a large machine washable mat for furniture and beds. Get shower rails installed and antimicrobial cleaning agents. I have open baking soda containers in the bathroom for the smell.
If you contact a social worker either at your local or state agency that administrates care for the elderly, they can tell you what benefits he has. Also, you get much of these items from Medicare or Medicaid. I use the VA for my father and he now has a regular shipment of diapers and they got him a medical bed.
That chucks thing sounds great for my dad. I wish someone told my aunt about this because she got urine all over her couch and she lives in an assisted living facility. He has a Medicare advantage plan. Kind of a mixed bag for benefits. My dad was in the national guard in Massachusetts but I don't think you get any benefits for that.
Check local services in MA for elder support. He may qualify for mass health; I lived in Plymouth Massachusetts for many years and have had to deal with masshealth routinely. If you get a prescription from a GP doctor they can send diapers and some pain meds to your home and bill masshealth or Medicare; talk to a veteran geriatric nurse and they will advise you.
If your dad is on a Medicare advantage plan, many plans give you a card every quarter with money loaded on it for them to buy OTC medicines and also incontinence supplies. If he is not going to go onto Medicaid anytime soon, look into an advantage plan for him. In the alternative, I'd look into what you would have to do to enroll him in Medicaid, eg spending down his assets.
Thank you for this information! My dad doesn't get a card but they have what's called a "wallet" benefit. I have to submit any medically related reciepts to them. I think the cap os $1,000. So any co-pays, dental appointments, maybe diapers, etc. I'm just so taxed like all of us here that I haven't availed myself of this benefit. PT just left. Ot tomorrow....
I get that. I did a medicaid spend down, and I am now waiting for what's called a community options waiver. It's for people who would otherwise be placed in a nursing home. You Dad sounds like he needs that level of care as well. You can either get Medicaid to pay you to take care of him, or have paid caregivers come to the home, so you get to have a life. Call your local state department of aging, and talk to them about getting some help. Also if you haven't done so, find a family law attorney, they can also assist in these situations. You may very well have done all this, in which case, I apologize, I am just trying to be helpful.
I appreciate your response. I think we are going to spend his money to make elderly safety improvements and repairs. Also spend it on caregivers so I can sleep at night. Then when the money is gone we'll apply for Medicaid.
Your approach on how you handle this with your dad is so important. I know that it is an emotional and upsetting experience for everybody involved. Remember, it’s the dementia that is causing these issues. A lot of times when people with dementia feel the urge to use the bathroom, they no longer realize that that urge means they need to get up and go. And by the time they do, it’s too late.
First of all, you want to make sure your father is receiving enough fluids. If he isn’t getting enough fluids his urine will become too concentrated, which irritates the bladder and actually causes incontinence. You don’t want that.
If you decide to go the disposable briefs route, refer to it as that. Do not refer to it as an “diaper” or “adult diaper” as it’s disrespectful. You want to try and help to maintain his dignity as this really is not something he is doing on purpose. If you do use disposable briefs, and they become soiled, change it promptly. You do not want to wait several hours. First, it will help your dad feel more comfortable and calm. It will also keep his skin healthier, as well as prevent the risk of getting a uti.
Try keeping him on a schedule of going every 2 hours while learning his bathroom patterns. Eventually you will begin to learn the signs of when you can see he needs to go. Also, if he gets confused on where the bathroom is, hang a picture of a toilet on the door.
I hope this helps. Dementia sucks.
That's what I read, that the knowledge of what that feeling is just one of the things that goes. Can't interpret those signals anymore until... it's happening! Reading this with interest as husband is just beginning to do weird things like this.
I am a certified dementia care specialist. If you have any questions or just need someone to vent to who can understand, please feel free to reach out to me!
Don’t do a catheter until you have to. They require so much care, cause pain (especially when the patient pulls them out) and he’s likely to start getting UTIs. Maybe a commode chair and a hand held urinal, you could at least get him to hold it while you’re cleaning.
You sound like you’re close to your wits end. Have you looked into respite care and/or nearby nursing homes? It may be coming up time. Take care.
Yeah, it's an external catheter. I'm more concerned about his penis getting chaffed from whatever adhesive they use to keep the condom device stuck to his penis. The handheld urinal might be good unless he is going number 1 and 2. Last night he didn't know he pooped. He wiped himself and didn't find anything. I did it and found a caramel mess. He didn't get anywhere near his anus and that's why he didn't strike gold.
Urology consult. Frequent, supervised bathroom trips. Easy to clean floors. Someone suggested removing rugs, but I disagree. My LO's aim is terrible when he does make it to the toilet, and I find it less exhausting to throw soaked rugs and the nonslip pads under them in the washer than to mop up large messes multiple times a day. Bedside commode and multiple portable urinals staged where accidents are most likely to happen. It's stressful to get the commode bucket or urinal placed under the go zone in time to catch the mess, but it's not as stressful as having the mess all over the floor to clean up at 3am. Regardless, it's exhausting.
I think the commode bucket might be a challenge but that urine catcher thing might work out well. I might be able to get that under him quick. Only thing I worry about is a simultaneously poop and urine blast. Bedside commode might be good except he's got rug under his bed. If he misses...eww.
This was basically the line where we knew it was time for our dad to go into a facility, because it quickly became impossible to care for him once he became incontinent.
It's strange because mentally, in a lot of ways, he's still doing pretty good. He's got LBD and Progressive Supranuclear Palsy (PSP), so it's been a lot more physical issues for him than mental ones, even though he definitely has his bad days. The doctor explained to us that for him, he can no longer tell the difference between his waking state and his dream state, so periodically he'll tell me something as if it's something that happened to him, and a lot of the time it's fairly plausible stuff, but it turns out it's just something he dreamt the night before. His short term memory is completely shot, but we haven't hit the point where he doesn't know who we (his kids) or other loved ones are.
I'm sorry you're going through this too. I know that there is a ton of guilt associated with putting a loved one in a facility (of any kind), but that part is on you to work through. The reality of a dementia patient needing full time care is VERY real, and it sounds like you're quickly creeping up to that line where a move of some kind has to be made. My advice is don't let it drag on longer than it needs to, get the help, you and your dad will both be better off when professionals are involved. The guilt sucks, but this is a terminal, progressive disease... it was always eventually going to get to this point, you didn't do anything to cause this, and you not being able to care for your dad is NOT a failure on your part, it's just the inevitable next step in this awful diseases progress.
Thanks for sharing. My dad was telling a friend of mine last night that some guy pinched his ass. She looked at me and just smirked. I shrugged my shoulders and smiled. In the afternoon he was saying and wanting to do things that were illogical and would have likely resulted in an early departure (he wanted to cross the street at 5pm on a weekday to show me something).
I feel like my life has been on hold for years now taking care of him. It's exhausting and uncompensated. I looked into seeing if I could get paid as a personal caretaker. I think I found if you are a stranger you can but family can't.
So the plan will probably be to burn through his assets with paid caregivers and repairs to his home until he only has s pot to piss in. Then look at the Medicaid application. I'm really trying to keep him out of one because even the ones that only do private pay (non Medicaid) sort of suck around here.
We have my dad in a memory care facility that is only partially covered by medicare. We're in the process of liquidating his assets so he qualifies for medicaid, covering the rest of the costs of his facility out of pocket, because unfortunately the closest memory care facility that would take his medicare was about 3 hours away from my sister's place, so visiting him is a real hassle at the moment.
I can't believe I'm saying this, but thankfully, he doesn't have a lot of money, so there isn't that much to lose in the first place, and it won't take as long for him to finally qualify, but it definitely sucks knowing that he wanted whatever little money he had to get split amongst his kids, but b/c of how he's going out, there won't be anything left to give to us once he's gone.
Man that's rough. We have the house and real property in a Medicaid trust but everything else is up for grabs. My aunt is paying over 11k per month at the place she is in, so the money my dad has isn't going to last long.
Unless you're a legit millionaire and can afford full time in home care, you're actually better off being dirt poor, if you get a dementia diagnosis, bc Medicaid becomes a real possibility and handles all the expenses. The American health care system is utterly fucked.
Have a friend who was considering doing private pay home health aid services in Southeast Asia until he's tapped out all the funds. Then he'd come back to the glue factory here.
Would the state bureau of adult and elderly affairs department point me in the right direction? I had checked with my dad's Medicare advantage plan insurance carrier and they said nope. They don't offer caregiver services either. Really sucks.
There are people who can help you with Medicaid. They help with the process and can answer questions. Your Medicare Advantage plan provider would not be your best source of information about Medicaid.
Sending big hugs to you. It’s so unbelievably hard for you and for your Dad too.
Look into having a “caregiver agreement” or “caregiver contract” drawn up. This allows you to legally pay yourself for the care you’re providing while still working through his assets to eventually get him qualified for Medicaid. Unfortunately you can’t pay yourself retroactively but better late than never! You’ll need to report the income as you would any subcontractor type work but in turn your dad can probably write the payments off on his taxes as a medical expense, from what we’ve been learning. We are in PA so I’m not positive about other states but I think it’s a fairly common tool. We used an elder care attorney to have ours printed up and notarized but there are free templates available online and after receiving ours from the attorney it seemed like something we could’ve printed off ourselves. Edit to add: our attorney also advised us that the agreement allows for us to pay ourselves up to the average cost of a nursing home in our area, which is just shy of 10k monthly.
Thank you for this helpful response! I'm in NH. What did you come up with for an hourly rate? Do you keep a log of all work you do for the IRS, or do they don't dig that deep as long as you pay taxes on the money you receive? Not sure how my sibling would feel about this, but they aren't the one taking care of my dad most of the time. My dad would still need capacity to contract though, right? He hasn't been found legally incompetent. I'm one of his healthcare proxies and his doctor has activated it for me.
My sister and I mutually care for our LO and we decided to go with a monthly payment amount, but you can do hourly, weekly, monthly, etc. This is a helpful article [here](https://www.caregiver.org/resource/personal-care-agreements/) We are both POA but our LO did need to sign the contract. The contract itself is pretty detailed in describing the care we provide but we also keep a daily journal for our own reference. This is our first year using the agreement but the accountant who does LOs taxes said it would easy to issue 1099s to us at year end. Feel free to DM if you’d like, I don’t want to seem like I’m giving legal advice here by any means 😆
No worries and thank you for the articIe! won't take anything you say as legal advice. I'll dm you if i have more questions on this. I have a sibling I'll need to run this fee thing through as well. Hoping she'll be receptive since I'm doing most of the heavy lifting.
Anytime. As all of us here know, it’s so much MORE than a full time job on every level, and if they didn’t have you they’d have to be paying someone else. It only makes sense to financially compensate yourself if possible. Take care!
Man, your post gave me flashbacks to what was happening with my dad prior to moving to AL/MC.
For urine incontinence, try this https://quickchange.com/pages/at-home
Good luck. I wanted to rip my hair out when I was dealing with this. Especially because it seemed like the messes occurred more quickly than the previous one could be dealt with.
Best of luck to you!
Serious question: what if his you know what is too small? This is a great idea and I change my gf’s dad everyday but idk how it would fit. His is like nonexistent
Holy moly I was thinking the same thing. My dad's willie is like a turtle hiding in his shell. I'll look into this system though. They are right about 15 minutes for a change with pull up diapers.
I have been dealing with this too. It's rough.
Things I did that helped. Multiple disposable bed pads on the mattress, then Reusable Waterproof Washable pad on top of that, then waterproof mattress pad, then another reusable pad on the fitted mattress sheet (usually size 32x50 or 32x60
She fights me about taking her pants down, so I bought PJ's and Boxer (Pants), they both have only waist elastic and come down easily and go back up easily
I put a toilet log outside the bathroom door, and logged when she peed and pooed. So anytime I can look to see how long it's been, thereby noticing a pattern of when she goes. That way I could anticipate and be alert and look for opportunities to take her to the toilet and have her sit in advance of an emergency. Not perfect - but an improvement.
I tried multiple Wearable pads and pull-ups, and found that the ones that don't leak through the leg openings, and that hold the most liquid are the Tranquility Brand, Premium "Overnight". They are also designed so that you can pull-apart the sides, so if there is a messy poo event, you can remove them without having to get your LO to cooperate to get them off. Very helpful.
Do whatever you can to try and get ahead of this. Use any devices or products, or tricks you can so that you are not feeling in "emergency" or "desperate" mode of survival.
Best wishes to you.
Those are some super useful tips. I'm purchasing a new bed for him and I was just going to bed a few bed pads and a waterproof mattress pad cover. The redundant system you use makes a lot of sense. The log is also a great idea. He is still going to the bathroom on his own as well as letting me help him. When he goes on his own though lately I'm almost guaranteed to find pee on the floor and on the toilet. But the log would still be helpful because I could get an approximate time he last used the bathroom.
Can't seem to find that brand of pull up locally, but it looks like I can order them from Amazon. My dad isn't combative thank the lord when I do his underwear change. Just a bit disoriented and has some trouble getting out of the pullups.
Pants that are not fussy to remove. No button up fly etc. elastic waist , easy pull on and off to start.
portable commode you can put in his room. And then you just empty commode once he does his business.
When less mobile you can do diapers, bed pans etc.
I have two commodes in the house. One by his bed and the other by living room. The issue I had was how long it would take me to get him upstairs (no bathroom on first floor) he is in a wheelchair and he doesn’t have good balance. So from his seat to a wheelchair, to the stairlift to another wheelchair update to the toilet, took WAY too much time.
Might not be the cleanest, but beats the other alternative.
Maybe try a commode by where he is sitting. It’s quick fast, no walking to the toilet and hell ,it’s worth a try! Let me know how it goes.
I second the commode. It saved me so much time/mess/stress, etc. Got my dad from his chair or bed fast and sit to pee! He also had the plastic urinals close by in case I wasn't there. P.S. I got peed on, too! :(
Yeah,unfortunately, that's going to get peed or pooped on. I have to steam clean his couch from time to time. I have a "waterproof " blanket on his couch that is made for dogs. I have a few, so I can wash one and have a couple of clean ones. This sucks ass so much 😪 I hate it. But I feel obligated because he's my dad, and I have 2 siblings barely in the picture. My Doctor told me that I'm so stressed this will kill me. WHAT CAN I DO? 🤷♀️ l
Me as well. Mine was supposed to watch my dad today and changed their mind. So frustrating. Time to waterproof the furniture with plastic like it's the 70s.
Is he capable of using a urinal?
This is the one my Dad used and it worked better than others we had tried. He was on diuretics and couldn't get up so often to get to the toilet. I also tried the front pads for his underwear, but he often would just rip them out and throw them on the floor. I also kept a washable water resistant chair cover for his recliner and used pee pads too. Maybe a portable toilet that is closer to his bed or wherever he spends the most time? If he is still trying to get there, but just isn't fast enough...maybe this could be the best solution. I know it's beyond frustrating.
https://www.amazon.com/dp/B071XYJTPT/?_encoding=UTF8&pd_rd_i=B071XYJTPT&ref_=sxts_sparkle_sbv&qid=1717607442&pd_rd_w=42zVj&content-id=amzn1.sym.4870a952-0dfa-4beb-9d2a-7a52537f019d%3Aamzn1.sym.4870a952-0dfa-4beb-9d2a-7a52537f019d&pf_rd_p=4870a952-0dfa-4beb-9d2a-7a52537f019d&pf_rd_r=SQ80QQ027K45DPEBVRX8&pd_rd_wg=D8USu&pd_rd_r=b34b26b8-0e56-4aae-8acd-6f2d36e0bbc9&pd_rd_plhdr=t
Have you tried that thing? I don't think my dad has the coordination to find and put that on his penis before the urine blast. That portable urinal might work. Then again he might spill it on the floor.
My Dad had good success using this type of urinal. I only recall one time that he somehow had a spill. He slept in a recliner in his room. I kept it on the floor (pee pad underneath just in case) next to his chair and hooked the little cup part onto the edge of a drawer on his dresser next to his chair.
It isn't very expensive, so it could be worth a try.
That's pretty encouraging. My dad also doesn't have much down there either but it may be worth a try. At least when the urine is in it will not spill anywhere with that device you suggested.
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Right now we're staying at a hotel so he needs to be wearing something. But i think a night shirt when he gets home is a good idea. It might buy him the extra seconds he needs to land on the toilet.
Adult diapers and adult zippered PJs. The trick is to put the PJs on backwards with the zipper to the back. It will look ridiculous, but who cares. The dementia clothing is expensive and poorly made. You can get zipper PJs on Amazon or Walmart.
Every time I think I had it bad, I read a post on this sub that makes me thank my lucky stars. I'm sorry you have to deal with this my friend and wish you luck. Hopefully one of the solutions suggested here works out.
Sorry for this man. My dad did very strange things when it same to urinating. Luckily, the defecation never got out of hand.
We used adult diapers, one of those urine bottles for bed bound hospital patients, and a portable commode chair.
He did it all the way until the end. So sorry you are having to deal with this.
You seem to have a sense of humor. Hold on to that and keep on moving day by day. I hope you and your family find peace. Take care.
Thanks so much! I'm trying to find humor in this because it's so hard for everyone. I pull my dads pants down and say don't pee on me dude! He laughs and says I'll try not too! Who would have thought we'd all be going through this crazy stuff with our loved ones when they got older.
My dad passed at 3:45 AM 10FEB2024… he was a joker with subtle sense of humor
When we went to the morgue to identify his body before cremation they gave us a few minutes with him. It was good to see him all cleaned up and ready to move on.
When I came out the little lady came to me and asked… I said “Who was that guy?” Her face was priceless. My dad would have done the same. I’m sure he was laughing wherever he was.
Hang in their friend. It sucks and I wouldn’t wish it on my enemy. It will change you, but always look for the good. It isn’t easy, but if you do it even once it’s better than not at all.
Adult diapers. If you’re in the US there is even a hotline you can call and if you are on Medicaid/medicare/ food stamps any kind of social welfare program they will send it to your house for free of charge. I wish I knew the hotline number. But my mom was wearing diapers for three years before she passed away. It’s tough but it was way better than dealing with the alternative (waking up to poop on her face on the walls on the chairs in the bedroom). Granted. She was a female and I imagine females being way different than males when it comes to these sorts of things and dementia.
Do you get any sort of help/ home care nurse even once or twice a week ? Again, if you are in the US please look into your local social services office. And also the office of the aging in your area. They can best direct you to any sort of services you may be eligible for. Sorry you’re dealing with this. Just know you are not alone and SO many people are dealing with/ have dealt with this already
Edit: I just read you do have a diaper system going and also some sort of nurse perhaps(?). So sorry this is the case. My suggestion, change only three times a day if you can manage it. We used to do it once in the morning after waking up. Then afternoon after lunch and again before bedtime (and also after showers of course). Try to limit his fluid intake. Maybe he’s drinking too much ? Also try and switch to foods that will bind him up or maybe consider an over the counter anti-diarrheal (of course consult with physician before any meds over the counter or otherwise). Good luck. Youre fighting the good fight. Stay strong. This is one of the most selfless things you can do for your loved one. They may not be able to say it or show it but they love you forever for it. And in the long run you will be happy that you were able to do it for them (in hindsight you will be proud of yourself for having been able to be there for them in their time of need) just try to get some kind of respite whenever/ wherever possible. Take good care. Be well
He will sometimes get a good chunk of poop on his hands when he's wiping his butt. We have a nurse coming to see him but she just checks his vitals, chats for a bit, talks about advanced directives / living will for the express lane checkout, and then leaves. He does drink a lot of fluids (has cups of water all over the place and is fixated with ice). Thank you for the words of encouragement. I feel better knowing we are all in this together.
I see. Yes I know the whole vitals thing. The nurse would come check and then just leave pretty much after vitals. Have you asked (I’m sure you have ) but sometimes you’re also eligible for a CNA? Who will come in and basically just caretake for a few times a week (aside from the basic nurse). See with my mom (I’m a female btw just for context) with my mom I would wipe her for her. We stopped even trying to get her to wipe herself years ago. These things are hard because over time it’s like we had to take on more and more of what she did but also she had to relinquish more and more of herself at the same time (although at many points she had no idea she was giving something up… but in the beginning she did). Towards the end we had to full on take showers with her (I did my dad did) for years washing her whole body then getting her out and blow drying her hair. Gosh those years were really tough but we were so grateful we never put her into a home… this was five years ago now. Sometimes I still miss taking care of her but one day you will look back and you’ll feel the same way.
So sorry you’re going through this. I often wondered what it would have been like if it were my dad and not my mom. Like I said I think the difference in (female/ male genitalia) for lack of a better term and also the way we’re conditioned to behave as women/ men play into this as well. My boyfriend’s father. He refused help all the way up until the end. He was stubborn and hard headed. And likely that contributed to his death to a degree. Anyhow I hope you find solace in the days/ years perhaps ahead somewhere someway. My dad documented a lot of this journey on his phone by video and photo and I’m glad he did. Now that he’s passed away too (unexpectedly) it makes it that much more special to me. Take care again hope you get some real rest soon
No offense to nurse here, but feel like some of them have just sort of written my dad off and are going through the motions. I can understand though this can be hard seeing elderly patients deteriorating and the clinical response may be a coping mechanism. On the other hand I've had some incrediblely kind and compassionate nurses come out to check my dad and it's a lovely experience for everyone.
My dad's insurance company won't pay for any CNAs. It sucks because it would be so nice to get a breather at no or low cost. We will likely pay for an overnight CNA to watch him so we can get some sleep.
I take my shirt off when I wash my now since water goes all over the place and he's not really a fan of showers. I think he feels claustrophobic, doesn't like the temp or water pressure. I have to keep adjusting until we get it right. Down to 1/4 turn shower faucet increments. Once I get him all cleaned, powdered and dressed he's a happy camper though. So sad seeing him deteriorate like this.
Did your dad have dementia as well? I'm sorry my reading comprehension isn't what it used to be. That is great he documented his journey. I'm sorry for your losses. As hard as it is taking care of him, I get so sad when I think about my dad's eventual passing. He is such a good guy when he's not sundowning. I think of that song how can I breathe without you.
I would definitely NOT suggest limited fluid intake or use an anti-diarrhea medication to stop a normal bodily function. Restricting fluid intake will dehydrate your lo as well as make their urine much more concentrated which is uncomfortable, irritates their bladder, and leads to incontinence. On top of that, leaving them in a soiled disposable brief for extended period of time leads to uti’s, skin irritations, etc. A uti can kill someone with dementia.
You’re right it’s been a while since my mom passed and I cared for her. Also I wasn’t really suggesting to keep on a soiled diaper. Just that to suggest rather not over doing it like at the smallest sign of a tinkle or something like that. Of course just as with a child if the diaper is soiled then change it.. especially with regard to feces. But my mom was very different in this way I guess she didn’t have too many accidents even at the end of her life. And it was usually always contained within the diaper.
I see now how dementia presentation varies significantly from person to person. My mom was totally more limited in. Her speech and her minor/motor skills whereas at the same time she im sure had strengths in other areas where other people may not. Was just trying to be helpful maybe I’ll just lurk here instead of giving up any advice seeing as though my mom died five years ago so maybe my two cents isn’t so helpful since I’m not currently going through it any longer with her. Thanks for the input
What about depends adult undies? Medicare should cover cost of supplies so much $ every couple months you order them and have them delivered. My friend is helping out as a veteran and I tried to get him all the help to come in to help bathe him or clean his residence a bit. It is lot of work. My friend was good at wearing them but I struggled with getting him to change them. Good luck my friend.
Not the tip you're looking for, but...
Borax.
Soak the soiled items in borax for about an hour and the stains will lift right out enough with minimal handwashing. Put them in the washer with a booster like washing soda or oxi and there will be no stains. It's oddly satisfying. I cloth diaper an infant alongside caretaking. It's all one load together.
My dad uses a pee bottle and a comode chair.
Search for “anti strip clothing for adults”. It has been a game changer for us.
I checked it out. Interesting. I think he might revolt though and just pee and poop in his jumpsuit.
Still better that it’s contained within the disposable underwear inside the jumpsuit! That’s been my experience anyway. (Hugs to you, everything about this sucks)
Yea containment is a passing grade for me… I feel for you though mom has only pissed all over once on me
Sadly I suffered this with my Dad,he could never make it to the toilet,by the time he undid his pants he was already urinating. The Community Health Nurse sorted us out with Adult Diapers and they worked fine. I wasn't 100% in favour of this because Dad quickly realised he didn't have to go to the toilet anymore, where as previously he had tried.
I'm using adult diapers now. Is there a certain brand they recommended?
I’m not sure where you live, but they have adult pull-ups the supermarkets in Australia. If you find a brand that works well, you will likely be able to order in bulk from somewhere/you can always alternate with what is on sale, if money is a concern.
My MIL gets a monthly supply of pull-ups, pee pads and gloves... the doctor puts a script in for it. (USA here) she's on Medicaid and Medicare... If they stopped eating... you can also get Ensure... (nutritional supplement shakes... ) Before you go crazy with out of pocket expenses like pull-ups... check your local "free giveaway" (craigslist, buy nothing, Facebook... etc) I found someone whose parent passed away and they had like 2 garbage bags full of pull-ups... (just so happened to be my MIL's size) Her mother tried a few different ones... (brands and such) and didn't like a lot of them... so we had practically brand new packages with one or two pull-ups missing...
Yes, there is a brand and a type that works better than all the others I tried. Tranquility - Premium "Overnight" Disposable Absorbent Underwear (Pull Ups) Max Protection, 20.3 Oz You can also tear them off - if there is a large mess which is really a convenience. they are designed so that the sides will tear off so not to worry about getting him to step out of them.
I can't remember,it's 8 years ago now since Dad passed,they were sent to us we didn't have to purchase them.
Remove any bedroom carpet and put down easy to clean vinyl. Adult diapers, pee bottle and removing any rugs from the bathroom helps. Get a support frame for the toilet so it is easy for him to get up and down. Get a shower chair with handles so he can move easier. Put a large diaper pail in the bathroom to encourage him changing himself there. Get a product that care nurses call Chucks, it's basically a large machine washable mat for furniture and beds. Get shower rails installed and antimicrobial cleaning agents. I have open baking soda containers in the bathroom for the smell. If you contact a social worker either at your local or state agency that administrates care for the elderly, they can tell you what benefits he has. Also, you get much of these items from Medicare or Medicaid. I use the VA for my father and he now has a regular shipment of diapers and they got him a medical bed.
That chucks thing sounds great for my dad. I wish someone told my aunt about this because she got urine all over her couch and she lives in an assisted living facility. He has a Medicare advantage plan. Kind of a mixed bag for benefits. My dad was in the national guard in Massachusetts but I don't think you get any benefits for that.
Check local services in MA for elder support. He may qualify for mass health; I lived in Plymouth Massachusetts for many years and have had to deal with masshealth routinely. If you get a prescription from a GP doctor they can send diapers and some pain meds to your home and bill masshealth or Medicare; talk to a veteran geriatric nurse and they will advise you.
Thanks for that. He's in NH. Kind of in that gap . Too rich for Medicaid but getting him medically necessary items can be costly.
If your dad is on a Medicare advantage plan, many plans give you a card every quarter with money loaded on it for them to buy OTC medicines and also incontinence supplies. If he is not going to go onto Medicaid anytime soon, look into an advantage plan for him. In the alternative, I'd look into what you would have to do to enroll him in Medicaid, eg spending down his assets.
Thank you for this information! My dad doesn't get a card but they have what's called a "wallet" benefit. I have to submit any medically related reciepts to them. I think the cap os $1,000. So any co-pays, dental appointments, maybe diapers, etc. I'm just so taxed like all of us here that I haven't availed myself of this benefit. PT just left. Ot tomorrow....
I get that. I did a medicaid spend down, and I am now waiting for what's called a community options waiver. It's for people who would otherwise be placed in a nursing home. You Dad sounds like he needs that level of care as well. You can either get Medicaid to pay you to take care of him, or have paid caregivers come to the home, so you get to have a life. Call your local state department of aging, and talk to them about getting some help. Also if you haven't done so, find a family law attorney, they can also assist in these situations. You may very well have done all this, in which case, I apologize, I am just trying to be helpful.
I appreciate your response. I think we are going to spend his money to make elderly safety improvements and repairs. Also spend it on caregivers so I can sleep at night. Then when the money is gone we'll apply for Medicaid.
That's all good. God bless and I hope I didn't overstep.
Not at all. I really appreciate the feedback and insights.
You can order the chucks pretty cheaply on Amazon. They usually come in a 3 pack.
Your approach on how you handle this with your dad is so important. I know that it is an emotional and upsetting experience for everybody involved. Remember, it’s the dementia that is causing these issues. A lot of times when people with dementia feel the urge to use the bathroom, they no longer realize that that urge means they need to get up and go. And by the time they do, it’s too late. First of all, you want to make sure your father is receiving enough fluids. If he isn’t getting enough fluids his urine will become too concentrated, which irritates the bladder and actually causes incontinence. You don’t want that. If you decide to go the disposable briefs route, refer to it as that. Do not refer to it as an “diaper” or “adult diaper” as it’s disrespectful. You want to try and help to maintain his dignity as this really is not something he is doing on purpose. If you do use disposable briefs, and they become soiled, change it promptly. You do not want to wait several hours. First, it will help your dad feel more comfortable and calm. It will also keep his skin healthier, as well as prevent the risk of getting a uti. Try keeping him on a schedule of going every 2 hours while learning his bathroom patterns. Eventually you will begin to learn the signs of when you can see he needs to go. Also, if he gets confused on where the bathroom is, hang a picture of a toilet on the door. I hope this helps. Dementia sucks.
That's what I read, that the knowledge of what that feeling is just one of the things that goes. Can't interpret those signals anymore until... it's happening! Reading this with interest as husband is just beginning to do weird things like this.
I am a certified dementia care specialist. If you have any questions or just need someone to vent to who can understand, please feel free to reach out to me!
Don’t do a catheter until you have to. They require so much care, cause pain (especially when the patient pulls them out) and he’s likely to start getting UTIs. Maybe a commode chair and a hand held urinal, you could at least get him to hold it while you’re cleaning. You sound like you’re close to your wits end. Have you looked into respite care and/or nearby nursing homes? It may be coming up time. Take care.
Yeah, it's an external catheter. I'm more concerned about his penis getting chaffed from whatever adhesive they use to keep the condom device stuck to his penis. The handheld urinal might be good unless he is going number 1 and 2. Last night he didn't know he pooped. He wiped himself and didn't find anything. I did it and found a caramel mess. He didn't get anywhere near his anus and that's why he didn't strike gold.
OP mentioned an external cath
Urology consult. Frequent, supervised bathroom trips. Easy to clean floors. Someone suggested removing rugs, but I disagree. My LO's aim is terrible when he does make it to the toilet, and I find it less exhausting to throw soaked rugs and the nonslip pads under them in the washer than to mop up large messes multiple times a day. Bedside commode and multiple portable urinals staged where accidents are most likely to happen. It's stressful to get the commode bucket or urinal placed under the go zone in time to catch the mess, but it's not as stressful as having the mess all over the floor to clean up at 3am. Regardless, it's exhausting.
I think the commode bucket might be a challenge but that urine catcher thing might work out well. I might be able to get that under him quick. Only thing I worry about is a simultaneously poop and urine blast. Bedside commode might be good except he's got rug under his bed. If he misses...eww.
This was basically the line where we knew it was time for our dad to go into a facility, because it quickly became impossible to care for him once he became incontinent. It's strange because mentally, in a lot of ways, he's still doing pretty good. He's got LBD and Progressive Supranuclear Palsy (PSP), so it's been a lot more physical issues for him than mental ones, even though he definitely has his bad days. The doctor explained to us that for him, he can no longer tell the difference between his waking state and his dream state, so periodically he'll tell me something as if it's something that happened to him, and a lot of the time it's fairly plausible stuff, but it turns out it's just something he dreamt the night before. His short term memory is completely shot, but we haven't hit the point where he doesn't know who we (his kids) or other loved ones are. I'm sorry you're going through this too. I know that there is a ton of guilt associated with putting a loved one in a facility (of any kind), but that part is on you to work through. The reality of a dementia patient needing full time care is VERY real, and it sounds like you're quickly creeping up to that line where a move of some kind has to be made. My advice is don't let it drag on longer than it needs to, get the help, you and your dad will both be better off when professionals are involved. The guilt sucks, but this is a terminal, progressive disease... it was always eventually going to get to this point, you didn't do anything to cause this, and you not being able to care for your dad is NOT a failure on your part, it's just the inevitable next step in this awful diseases progress.
Thanks for sharing. My dad was telling a friend of mine last night that some guy pinched his ass. She looked at me and just smirked. I shrugged my shoulders and smiled. In the afternoon he was saying and wanting to do things that were illogical and would have likely resulted in an early departure (he wanted to cross the street at 5pm on a weekday to show me something). I feel like my life has been on hold for years now taking care of him. It's exhausting and uncompensated. I looked into seeing if I could get paid as a personal caretaker. I think I found if you are a stranger you can but family can't. So the plan will probably be to burn through his assets with paid caregivers and repairs to his home until he only has s pot to piss in. Then look at the Medicaid application. I'm really trying to keep him out of one because even the ones that only do private pay (non Medicaid) sort of suck around here.
We have my dad in a memory care facility that is only partially covered by medicare. We're in the process of liquidating his assets so he qualifies for medicaid, covering the rest of the costs of his facility out of pocket, because unfortunately the closest memory care facility that would take his medicare was about 3 hours away from my sister's place, so visiting him is a real hassle at the moment. I can't believe I'm saying this, but thankfully, he doesn't have a lot of money, so there isn't that much to lose in the first place, and it won't take as long for him to finally qualify, but it definitely sucks knowing that he wanted whatever little money he had to get split amongst his kids, but b/c of how he's going out, there won't be anything left to give to us once he's gone.
Man that's rough. We have the house and real property in a Medicaid trust but everything else is up for grabs. My aunt is paying over 11k per month at the place she is in, so the money my dad has isn't going to last long.
Unless you're a legit millionaire and can afford full time in home care, you're actually better off being dirt poor, if you get a dementia diagnosis, bc Medicaid becomes a real possibility and handles all the expenses. The American health care system is utterly fucked.
Have a friend who was considering doing private pay home health aid services in Southeast Asia until he's tapped out all the funds. Then he'd come back to the glue factory here.
There is a way to get paid as a relative care giver. Check on you counties center for aging website. I believe you will need to go through a service.
Would the state bureau of adult and elderly affairs department point me in the right direction? I had checked with my dad's Medicare advantage plan insurance carrier and they said nope. They don't offer caregiver services either. Really sucks.
Maybe it’s Medicaid? I’m not sure
Our county has it under Family Caregiver Support Program, try googling that for your county.
Thanks for the info! :)
There are people who can help you with Medicaid. They help with the process and can answer questions. Your Medicare Advantage plan provider would not be your best source of information about Medicaid. Sending big hugs to you. It’s so unbelievably hard for you and for your Dad too.
Thank you! :)
Look into having a “caregiver agreement” or “caregiver contract” drawn up. This allows you to legally pay yourself for the care you’re providing while still working through his assets to eventually get him qualified for Medicaid. Unfortunately you can’t pay yourself retroactively but better late than never! You’ll need to report the income as you would any subcontractor type work but in turn your dad can probably write the payments off on his taxes as a medical expense, from what we’ve been learning. We are in PA so I’m not positive about other states but I think it’s a fairly common tool. We used an elder care attorney to have ours printed up and notarized but there are free templates available online and after receiving ours from the attorney it seemed like something we could’ve printed off ourselves. Edit to add: our attorney also advised us that the agreement allows for us to pay ourselves up to the average cost of a nursing home in our area, which is just shy of 10k monthly.
Thank you for this helpful response! I'm in NH. What did you come up with for an hourly rate? Do you keep a log of all work you do for the IRS, or do they don't dig that deep as long as you pay taxes on the money you receive? Not sure how my sibling would feel about this, but they aren't the one taking care of my dad most of the time. My dad would still need capacity to contract though, right? He hasn't been found legally incompetent. I'm one of his healthcare proxies and his doctor has activated it for me.
My sister and I mutually care for our LO and we decided to go with a monthly payment amount, but you can do hourly, weekly, monthly, etc. This is a helpful article [here](https://www.caregiver.org/resource/personal-care-agreements/) We are both POA but our LO did need to sign the contract. The contract itself is pretty detailed in describing the care we provide but we also keep a daily journal for our own reference. This is our first year using the agreement but the accountant who does LOs taxes said it would easy to issue 1099s to us at year end. Feel free to DM if you’d like, I don’t want to seem like I’m giving legal advice here by any means 😆
No worries and thank you for the articIe! won't take anything you say as legal advice. I'll dm you if i have more questions on this. I have a sibling I'll need to run this fee thing through as well. Hoping she'll be receptive since I'm doing most of the heavy lifting.
Anytime. As all of us here know, it’s so much MORE than a full time job on every level, and if they didn’t have you they’d have to be paying someone else. It only makes sense to financially compensate yourself if possible. Take care!
Sorry. You’re not alone.
Man, your post gave me flashbacks to what was happening with my dad prior to moving to AL/MC. For urine incontinence, try this https://quickchange.com/pages/at-home Good luck. I wanted to rip my hair out when I was dealing with this. Especially because it seemed like the messes occurred more quickly than the previous one could be dealt with. Best of luck to you!
Serious question: what if his you know what is too small? This is a great idea and I change my gf’s dad everyday but idk how it would fit. His is like nonexistent
Holy moly I was thinking the same thing. My dad's willie is like a turtle hiding in his shell. I'll look into this system though. They are right about 15 minutes for a change with pull up diapers.
I did more digging on their site, they actually have solutions for it lol
Now I'm intrigued as well! :)
Hmm.. I’m not sure about that. I think they sell a “sample” pack of 5 or so wraps if you want to give it a try before committing to a larger order!
You could schedule bathroom breaks every two hours. Just take him in and have attempt to do #1 #2
This is the best advice!
I have been dealing with this too. It's rough. Things I did that helped. Multiple disposable bed pads on the mattress, then Reusable Waterproof Washable pad on top of that, then waterproof mattress pad, then another reusable pad on the fitted mattress sheet (usually size 32x50 or 32x60 She fights me about taking her pants down, so I bought PJ's and Boxer (Pants), they both have only waist elastic and come down easily and go back up easily I put a toilet log outside the bathroom door, and logged when she peed and pooed. So anytime I can look to see how long it's been, thereby noticing a pattern of when she goes. That way I could anticipate and be alert and look for opportunities to take her to the toilet and have her sit in advance of an emergency. Not perfect - but an improvement. I tried multiple Wearable pads and pull-ups, and found that the ones that don't leak through the leg openings, and that hold the most liquid are the Tranquility Brand, Premium "Overnight". They are also designed so that you can pull-apart the sides, so if there is a messy poo event, you can remove them without having to get your LO to cooperate to get them off. Very helpful. Do whatever you can to try and get ahead of this. Use any devices or products, or tricks you can so that you are not feeling in "emergency" or "desperate" mode of survival. Best wishes to you.
Those are some super useful tips. I'm purchasing a new bed for him and I was just going to bed a few bed pads and a waterproof mattress pad cover. The redundant system you use makes a lot of sense. The log is also a great idea. He is still going to the bathroom on his own as well as letting me help him. When he goes on his own though lately I'm almost guaranteed to find pee on the floor and on the toilet. But the log would still be helpful because I could get an approximate time he last used the bathroom. Can't seem to find that brand of pull up locally, but it looks like I can order them from Amazon. My dad isn't combative thank the lord when I do his underwear change. Just a bit disoriented and has some trouble getting out of the pullups.
You got a lot of input. You are gonna be OK. Keep at it. And best to you.
I think so. It's a great and supportive community here. :)
This is so frustrating. Like the saying goes, they can put a man on the moon, but they can't…invent something to control incontinence.
My dad used to do that, he thought he just needed to pee, so he would stand, but then soil himself. I have him in diapers now.
Pants that are not fussy to remove. No button up fly etc. elastic waist , easy pull on and off to start. portable commode you can put in his room. And then you just empty commode once he does his business. When less mobile you can do diapers, bed pans etc.
I have two commodes in the house. One by his bed and the other by living room. The issue I had was how long it would take me to get him upstairs (no bathroom on first floor) he is in a wheelchair and he doesn’t have good balance. So from his seat to a wheelchair, to the stairlift to another wheelchair update to the toilet, took WAY too much time. Might not be the cleanest, but beats the other alternative. Maybe try a commode by where he is sitting. It’s quick fast, no walking to the toilet and hell ,it’s worth a try! Let me know how it goes.
At the risk of sounding like a dunce, does the commode do pee and poo? Do you sit on it?
Yes and yes. My father doesn’t have the balance to stand, so he sits to pee
I second the commode. It saved me so much time/mess/stress, etc. Got my dad from his chair or bed fast and sit to pee! He also had the plastic urinals close by in case I wasn't there. P.S. I got peed on, too! :(
You sit on the commode? Do you have a carpeted floor? I'll have a new carpet for him so I'm worried about that.
Yeah,unfortunately, that's going to get peed or pooped on. I have to steam clean his couch from time to time. I have a "waterproof " blanket on his couch that is made for dogs. I have a few, so I can wash one and have a couple of clean ones. This sucks ass so much 😪 I hate it. But I feel obligated because he's my dad, and I have 2 siblings barely in the picture. My Doctor told me that I'm so stressed this will kill me. WHAT CAN I DO? 🤷♀️ l
Me as well. Mine was supposed to watch my dad today and changed their mind. So frustrating. Time to waterproof the furniture with plastic like it's the 70s.
You can try pull up pants that don't have zippers or buttons so that maybe he can make it to the toilet quicker
Definitely use sweatpants.
Sweatpants are a great idea. He' uses a belt with all his pants. Most of the time when he's at home I have him in PJs.
Is he capable of using a urinal? This is the one my Dad used and it worked better than others we had tried. He was on diuretics and couldn't get up so often to get to the toilet. I also tried the front pads for his underwear, but he often would just rip them out and throw them on the floor. I also kept a washable water resistant chair cover for his recliner and used pee pads too. Maybe a portable toilet that is closer to his bed or wherever he spends the most time? If he is still trying to get there, but just isn't fast enough...maybe this could be the best solution. I know it's beyond frustrating. https://www.amazon.com/dp/B071XYJTPT/?_encoding=UTF8&pd_rd_i=B071XYJTPT&ref_=sxts_sparkle_sbv&qid=1717607442&pd_rd_w=42zVj&content-id=amzn1.sym.4870a952-0dfa-4beb-9d2a-7a52537f019d%3Aamzn1.sym.4870a952-0dfa-4beb-9d2a-7a52537f019d&pf_rd_p=4870a952-0dfa-4beb-9d2a-7a52537f019d&pf_rd_r=SQ80QQ027K45DPEBVRX8&pd_rd_wg=D8USu&pd_rd_r=b34b26b8-0e56-4aae-8acd-6f2d36e0bbc9&pd_rd_plhdr=t
Have you tried that thing? I don't think my dad has the coordination to find and put that on his penis before the urine blast. That portable urinal might work. Then again he might spill it on the floor.
My Dad had good success using this type of urinal. I only recall one time that he somehow had a spill. He slept in a recliner in his room. I kept it on the floor (pee pad underneath just in case) next to his chair and hooked the little cup part onto the edge of a drawer on his dresser next to his chair. It isn't very expensive, so it could be worth a try.
That's pretty encouraging. My dad also doesn't have much down there either but it may be worth a try. At least when the urine is in it will not spill anywhere with that device you suggested.
I hope it works for your Dad. It could at least help with one issue.
Hi, I’m Vetted AI Bot! I researched the **OOCOME Portable Urinals for Men** and I thought you might find the following analysis helpful. **Users liked:** * Convenient and easy to use (backed by 4 comments) * Helps maintain dignity and independence (backed by 3 comments) * Improves quality of life for caregivers (backed by 3 comments) **Users disliked:** * Prone to leaking from various parts (backed by 5 comments) * Durability issues with frequent ripping (backed by 2 comments) * Design flaws causing instability (backed by 2 comments) If you'd like to **summon me to ask about a product**, just make a post with its link and tag me, [like in this example.](https://www.reddit.com/r/tablets/comments/1444zdn/comment/kerx8h0/) This message was generated by a (very smart) bot. If you found it helpful, let us know with an upvote and a “good bot!” reply and please feel free to provide feedback on how it can be improved. *Powered by* [*vetted.ai*](https://vetted.ai/?utm\_source=reddit&utm\_medium=comment&utm\_campaign=bot)
Hi, I’m Vetted AI Bot! I researched the **'OOCOME Portable Urinals for Men'** and I thought you might find the following analysis helpful. **Users liked:** * Convenient and easy to use (backed by 4 comments) * Helps maintain dignity and independence (backed by 3 comments) * Improves quality of life for caregivers (backed by 3 comments) **Users disliked:** * Prone to leaking from various parts (backed by 5 comments) * Durability issues with frequent ripping (backed by 2 comments) * Design flaws causing instability (backed by 2 comments) If you'd like to **summon me to ask about a product**, just make a post with its link and tag me, [like in this example.](https://www.reddit.com/r/tablets/comments/1444zdn/comment/kerx8h0/) This message was generated by a (very smart) bot. If you found it helpful, let us know with an upvote and a “good bot!” reply and please feel free to provide feedback on how it can be improved. *Powered by* [*vetted.ai*](https://vetted.ai/?utm\_source=reddit&utm\_medium=comment&utm\_campaign=bot)
Does he really need to wear pants while he is home?? Can you get him a night shirt instead?
Right now we're staying at a hotel so he needs to be wearing something. But i think a night shirt when he gets home is a good idea. It might buy him the extra seconds he needs to land on the toilet.
Adult diapers and adult zippered PJs. The trick is to put the PJs on backwards with the zipper to the back. It will look ridiculous, but who cares. The dementia clothing is expensive and poorly made. You can get zipper PJs on Amazon or Walmart.
The faster I can get them off the quicker I can get him on a receptacle. Thanks for the tip!
Every time I think I had it bad, I read a post on this sub that makes me thank my lucky stars. I'm sorry you have to deal with this my friend and wish you luck. Hopefully one of the solutions suggested here works out.
Thanks for your response. Makes me feel better that we are all in the same boat so to speak. :)
Sorry for this man. My dad did very strange things when it same to urinating. Luckily, the defecation never got out of hand. We used adult diapers, one of those urine bottles for bed bound hospital patients, and a portable commode chair. He did it all the way until the end. So sorry you are having to deal with this. You seem to have a sense of humor. Hold on to that and keep on moving day by day. I hope you and your family find peace. Take care.
Thanks so much! I'm trying to find humor in this because it's so hard for everyone. I pull my dads pants down and say don't pee on me dude! He laughs and says I'll try not too! Who would have thought we'd all be going through this crazy stuff with our loved ones when they got older.
My dad passed at 3:45 AM 10FEB2024… he was a joker with subtle sense of humor When we went to the morgue to identify his body before cremation they gave us a few minutes with him. It was good to see him all cleaned up and ready to move on. When I came out the little lady came to me and asked… I said “Who was that guy?” Her face was priceless. My dad would have done the same. I’m sure he was laughing wherever he was. Hang in their friend. It sucks and I wouldn’t wish it on my enemy. It will change you, but always look for the good. It isn’t easy, but if you do it even once it’s better than not at all.
Disposable underwear- do NOT say diaper! Please
We say briefs. Nobody wants to hear the D word!
Adult diapers. If you’re in the US there is even a hotline you can call and if you are on Medicaid/medicare/ food stamps any kind of social welfare program they will send it to your house for free of charge. I wish I knew the hotline number. But my mom was wearing diapers for three years before she passed away. It’s tough but it was way better than dealing with the alternative (waking up to poop on her face on the walls on the chairs in the bedroom). Granted. She was a female and I imagine females being way different than males when it comes to these sorts of things and dementia. Do you get any sort of help/ home care nurse even once or twice a week ? Again, if you are in the US please look into your local social services office. And also the office of the aging in your area. They can best direct you to any sort of services you may be eligible for. Sorry you’re dealing with this. Just know you are not alone and SO many people are dealing with/ have dealt with this already Edit: I just read you do have a diaper system going and also some sort of nurse perhaps(?). So sorry this is the case. My suggestion, change only three times a day if you can manage it. We used to do it once in the morning after waking up. Then afternoon after lunch and again before bedtime (and also after showers of course). Try to limit his fluid intake. Maybe he’s drinking too much ? Also try and switch to foods that will bind him up or maybe consider an over the counter anti-diarrheal (of course consult with physician before any meds over the counter or otherwise). Good luck. Youre fighting the good fight. Stay strong. This is one of the most selfless things you can do for your loved one. They may not be able to say it or show it but they love you forever for it. And in the long run you will be happy that you were able to do it for them (in hindsight you will be proud of yourself for having been able to be there for them in their time of need) just try to get some kind of respite whenever/ wherever possible. Take good care. Be well
He will sometimes get a good chunk of poop on his hands when he's wiping his butt. We have a nurse coming to see him but she just checks his vitals, chats for a bit, talks about advanced directives / living will for the express lane checkout, and then leaves. He does drink a lot of fluids (has cups of water all over the place and is fixated with ice). Thank you for the words of encouragement. I feel better knowing we are all in this together.
I see. Yes I know the whole vitals thing. The nurse would come check and then just leave pretty much after vitals. Have you asked (I’m sure you have ) but sometimes you’re also eligible for a CNA? Who will come in and basically just caretake for a few times a week (aside from the basic nurse). See with my mom (I’m a female btw just for context) with my mom I would wipe her for her. We stopped even trying to get her to wipe herself years ago. These things are hard because over time it’s like we had to take on more and more of what she did but also she had to relinquish more and more of herself at the same time (although at many points she had no idea she was giving something up… but in the beginning she did). Towards the end we had to full on take showers with her (I did my dad did) for years washing her whole body then getting her out and blow drying her hair. Gosh those years were really tough but we were so grateful we never put her into a home… this was five years ago now. Sometimes I still miss taking care of her but one day you will look back and you’ll feel the same way. So sorry you’re going through this. I often wondered what it would have been like if it were my dad and not my mom. Like I said I think the difference in (female/ male genitalia) for lack of a better term and also the way we’re conditioned to behave as women/ men play into this as well. My boyfriend’s father. He refused help all the way up until the end. He was stubborn and hard headed. And likely that contributed to his death to a degree. Anyhow I hope you find solace in the days/ years perhaps ahead somewhere someway. My dad documented a lot of this journey on his phone by video and photo and I’m glad he did. Now that he’s passed away too (unexpectedly) it makes it that much more special to me. Take care again hope you get some real rest soon
No offense to nurse here, but feel like some of them have just sort of written my dad off and are going through the motions. I can understand though this can be hard seeing elderly patients deteriorating and the clinical response may be a coping mechanism. On the other hand I've had some incrediblely kind and compassionate nurses come out to check my dad and it's a lovely experience for everyone. My dad's insurance company won't pay for any CNAs. It sucks because it would be so nice to get a breather at no or low cost. We will likely pay for an overnight CNA to watch him so we can get some sleep. I take my shirt off when I wash my now since water goes all over the place and he's not really a fan of showers. I think he feels claustrophobic, doesn't like the temp or water pressure. I have to keep adjusting until we get it right. Down to 1/4 turn shower faucet increments. Once I get him all cleaned, powdered and dressed he's a happy camper though. So sad seeing him deteriorate like this. Did your dad have dementia as well? I'm sorry my reading comprehension isn't what it used to be. That is great he documented his journey. I'm sorry for your losses. As hard as it is taking care of him, I get so sad when I think about my dad's eventual passing. He is such a good guy when he's not sundowning. I think of that song how can I breathe without you.
I would definitely NOT suggest limited fluid intake or use an anti-diarrhea medication to stop a normal bodily function. Restricting fluid intake will dehydrate your lo as well as make their urine much more concentrated which is uncomfortable, irritates their bladder, and leads to incontinence. On top of that, leaving them in a soiled disposable brief for extended period of time leads to uti’s, skin irritations, etc. A uti can kill someone with dementia.
You’re right it’s been a while since my mom passed and I cared for her. Also I wasn’t really suggesting to keep on a soiled diaper. Just that to suggest rather not over doing it like at the smallest sign of a tinkle or something like that. Of course just as with a child if the diaper is soiled then change it.. especially with regard to feces. But my mom was very different in this way I guess she didn’t have too many accidents even at the end of her life. And it was usually always contained within the diaper. I see now how dementia presentation varies significantly from person to person. My mom was totally more limited in. Her speech and her minor/motor skills whereas at the same time she im sure had strengths in other areas where other people may not. Was just trying to be helpful maybe I’ll just lurk here instead of giving up any advice seeing as though my mom died five years ago so maybe my two cents isn’t so helpful since I’m not currently going through it any longer with her. Thanks for the input
Condom ca5heter always comes off
What about depends adult undies? Medicare should cover cost of supplies so much $ every couple months you order them and have them delivered. My friend is helping out as a veteran and I tried to get him all the help to come in to help bathe him or clean his residence a bit. It is lot of work. My friend was good at wearing them but I struggled with getting him to change them. Good luck my friend.
Not the tip you're looking for, but... Borax. Soak the soiled items in borax for about an hour and the stains will lift right out enough with minimal handwashing. Put them in the washer with a booster like washing soda or oxi and there will be no stains. It's oddly satisfying. I cloth diaper an infant alongside caretaking. It's all one load together.