Parents, brother and his wife are very upset with me. Advice?

The post below from disgustedtoo provides some really excellent insightful answers. I agree there are many docs and nurses who do not understand the various dementias and the many and various individual cognitive and behavioural expressions of them.

I hope Mum gets proper ongoing assessments as her needs progress. And also that you all as a family find the supports that you all need.

Best wishes and prayers to you all. Take care.

I've already posted my thoughts about mom's "sharp tackness", but it may get lost in the replies to replies...

Dementia is an umbrella that covers many different types of cognitive issues. Not all begin with memory loss. In particular, FTD is one where memory loss happens later in the progression. The reason I've focused on this one is because of the various things mentioned:
Incontinence
Hygeine
Apathy
Potentially the outbursts (both towards bro and you, through your daughter)

Source:
https://www.theaftd.org/wp-content/uploads/2011/09/January-2014.pdf
"Introduction
Loss of bladder and bowel control occurs in most dementias; however, in most cases, it occurs in advanced disease. This is not the case with people with behavior variant FTD (bvFTD). Bowel and bladder incontinence can occur early in the disease, especially when the person is under stress or in a highly stimulating environment. People with FTD may experience incontinence due to apathy with disinhibition, compulsive behavior, distractibility and a lack of insight. As the disease progresses, they may not know what to do with urges to evacuate. Moreover, because of the cognitive and behavior symptoms in bvFTD, persons may respond to the presence of urine or bowel movement (BM) in a socially inappropriate manner. This can increase stress for family and the risk of others in the environment being exposed to infectious illness, particularly nausea and diarrhea. As a general rule people with FTD do not benefit from bladder retraining programs or from feedback from people providing care. They may resist wearing protective garments and become irritable or resistant when caregivers try to clean them. They may give caregivers “the look,” a generally benign but frightening stare that keeps helpers at bay."

For the following, keep in mind that while many symptoms are shared among those with FTD, not all need to be exhibited. I just copy/pasted the list from this site.

Source:
https://my.clevelandclinic.org/health/diseases/21075-frontotemporal-dementia

"What are the symptoms of frontotemporal dementia (FTD)?
Early behavioral changes may include:

*Inappropriate social behavior and lack of social tact/manners. Examples include touching or kissing strangers, urinating in public, making rude or offensive comments, arguing, rashly overspending, and/or doing or saying things that others would find embarrassing or disgusting.

*Lack of empathy (interest in, or understanding of, what others feel), loss of interest in other people or activities, reduced affection, neglect of personal grooming and hygiene. People with FTD are not aware of the changes that are happening and do not know how hurtful they are to close family members.

*Changes in food preferences, overstuffing mouth with food, binge eating, eating food quickly, attempting to eat non-food items.

*Becoming very obsessive or developing rituals, repeating things, collecting/hoarding items."

My mother probably had vascular dementia, in which the symptoms are different, or at least happen in a different order. She did NOT exhibit all symptoms, but it was clear that she had short term memory loss, which "stepped down" at one point, leaving her in life about 40+ years ago. Very different from FTD.

I wish I could bold the sections that seem to fit. Please read it and give it some thought. You don't see her very often. This could be why your brother is on edge. Also, just because SIL is a nurse doesn't mean she would know this when she sees it! There are many docs and nurses who haven't dealt with any dementia. I really do think your mom may be headed down this path and it's no yellow brick road....

Sometimes giving a choice works, wear a pull-up or think about going to assisted living, it is your choice

I am a solo caregiver who can only hope my abrasive brother will stay out of the picture. My heart goes out to you because your story resonates.

I agree with comments that these are all signs of your mother's considerable cognitive decline and family's dysfunction and inability to manage it.

My advice is to:
1. Recognize your mother's health is failing - physically and cognitively - and decide how you want to make peace with that.

2. Realize the road ahead for your father, bother and sister-in-law is tough. Very tough. You are far enough removed to: stand back, help out, or make problems.

Read all the advice and decide how important those two weeks were in the larger scope of things.

You were not in the wrong. I am sorry you were lied to about her physical and cognitive status, but they told you the collective truth they are desperately trying to create. I am sorry for damage to your home. I am sorry for your brother's harsh words. I am sorry you are disenfranchised from your family.
All that is true.
But, you are unlikely to hear an apology. Is the struggle to get one worth it?

I wish you peace in the days, weeks, months and years to come.

Maybe it's time for a family meeting with a continence nurse, or even geriatrician to explain how to deal with you mother's situation at home/travelling/visiting? Has she even been diagnosed? This is not a condition that is likely to resolve, it is very likely to worsen, so it would be good to have everyone on the same page, with expert advice and support huh.

Best wishes to you, and take care of yourself, be kind to yourself even when others are not.

The family should have all (together) encouraged mother to wear absorbable briefs. You can buy them at any grocery store and are very comfortable. Mother is self neglecting. You did nothing wrong. Further, how dare they be angry with you for protecting your house.

oh there is no easy answer when family dynamics are the instigator.
It is easy to say denial is the culprit but your brother might be feeling overwhelmed and is upset that you don’t have to deal what he and his wife are dealing with on a more regular basis. His response is to show he is more “compassionate and understanding” by making you feel less so. Believe it or not he needs you to acknowledge what he must be going through and that you love him for it. Find ways to support family in dealing with this. You did nothing wrong!!! The decline your Mom is experiencing will only worsen. Your brothers tensions will worsen and though you love them all and did nothing wrong, they will distant themselves from you because, “You don’t get it” in their minds.
What can you do? Offer love, support, and forgiveness and Just let go. This is life. It is so hard.

That you feel 'awful' upsetting everyone tells volumes.
It sounds like you have deep rooted self-esteem, self-worth issues and may benefit from therapy. I am not being flippant. I believe this will help you feel whole and a sense of self-esteem.
WHAT I WOULD DO:
* Tell all family members to STOP berating you and that they owe YOU an apology. If they continue, which they likely will (as you have a pattern of accepting 'putting up' with this behavior), tell them you are going to hang up (the phone) and then do it.
- Do not communicate with them until they apologize.
* Send a bill to family for whatever aspect(s) of floor are ruined.
* Tell them to stay in a hotel next time.
* Examine why I feel this way (meaning you). Do some self-reflection. Although I believe a therapist could be invaluable to you.
* I do believe what you are missing is "YOU" - feeling worthy.
Please do what you need to do to feel worthy and expect self-respect . . . which happens when you believe and demand it. Otherwise, people will walk all over you. Gena aka Touch Matters

Imho, they are in denial and something seems to be amiss with their inability to recognize urine.

If I were you, all future visits should be done by you to their community. You are not unreasonable in your expectations for visitors in your home. Good luck.

Mom needs more supervision in the bathroom.
Is mom wearing "underwear" or incontinent products like Depends or pads?
If she is wearing regular underwear it might be long past time to switch. If she is using pads it is time to switch to a "pull up" or tab brief. (tab briefs do not work real well if the person is mobile. (I used to put a pair of regular "boxer briefs" on my husband that kept the tab type in place and secure.)

Try Odor Ban on your floors it is enzyme based and will take care of odors as well as kill any bacteria.
Clorox makes a product called Urine Remover and it also works well. I happen to like the smell of Odor Ban. It is also a sanitizer and I like using it in my steam mop.

The rest of the family is in denial about the problem and that is their "problem" you deal with it as you did. Maybe you did them a favor by helping them realize that this is a problem that will not get better. Makes me wonder what parents house is like and maybe dad no longer notices the "accidents" as the commercial says he might be "nose blind"

This is a classic example of denial on their part. Do not feel guilty. They are shifting blame from her to you in an effort to keep her feeling"normal. Sorry but we all age and if we have a medical condition that effects others, then it is unkind to ignore it. Her problem of leakage is not going away. It is why Depends etc are made. She may be very embarrassed but wearing a Depends isn't seen and her pee is seen and smelled ! How absurd her husband and some of her adult children want to ignore or minimize it.
This is not normal. If you went to their house and vomited all over and left it, or poured soda on their floors and left it, would it be ok? Of course not. Why doesn't she want to seek medical help for her issue is the REAL problem here.

If this woman is peeing and causing horrific odors and family disunity, I hate to say it - but I would NOT allow her to live in the home. There is too much to lose. She is aging with physical problems and getting dementia and this is too big for people to handle at home. She should be placed. Please don't allow this to continue - in the meantime have her medically checked to see if there is solution.

For your moms sake and everyone else’s she needs to wear adult diapers. In the long run it will preserve her dignity and everyone else’s sanity. I’m sorry, but your family sounds a little dysfunctional if they are blaming you or her for any of this. If your mom is headed for more problems it seems like it’s time for some counseling for all of you. There are usually senior agencies run by your local government who could assist you with all this.

No way do you need to tolerate your mother peeing all over your house (and car.)

Your family is upset b/c you did not go along with their ridiculous denial that your mother has a problem.. Your efforts to clean up embarrassed them b/c they announced the accidents loud and clear.

Too bad.

Your mother's incontinence is the problem, not your efforts to keep your house clean.

Mom needs to use adult pull ups, extra pads can be addes for max absorption. As for everyone being angry about ckean up...so sorry, but it's your home, you get to clean as necessary. If they want to pitch in, fine. No need to paddle in piss.

So, I need to post again after reading everyone else's responses and thinking further.

If it were me, unless you are seriously looking to take over care for your parents,

I would totally drop the matter ( you were in the right completely ) and no longer discuss any kind of care for your mom / dad. As long as your parents are in another town with your brother and sister-in-law, they are the ones who need to deal with it or not, whatever they choose.

And be prepared for any future visits as someone else said, lay down ground rules, or better yet just don't be home to accept a visit, at least not until they notify you that they have acknowledged and fixed the situation.

First of all your dad should not be yelling at your mother. Your mother should be wearing depends. I would encourage to see her doctor for her incontinence issues, perhaps she has a UTI. Your family seems to be causing more stress. I would not want urine all over our house and I certainly would not want to clean it all day long and smell urine. Gosh my mother has incontinent issues and we stayed at my brothers a few times. She worn depends, I bought a portable commode and she was clean as a whistle. No smell of urine in his house. We respected his property and if it was more of a problem we would have stayed home. Tell family to vacation somewhere else! Good luck.

They make lovely adult pull-ups for women these days that look just like underwear but are disposable. I don’t understand why she just doesn’t use these, carrying a few down in her purse in case of accidents. Accidents are part of life as we get older. We can’t deny it but find ways to deal with it.

You are right - they are wrong. Period. Its your home. You cleaned up the mess (even after being told she was not having "much" problem.)

Maybe they are used to it, but not even OK for them to live in it much less expect others to ignore accidents. (What does Mom and Dads place smell like?)

Perhaps a visit to them is a good idea - could be brother is in over his head looking for help? May be time for in home help (cleaning service?)

My mom is 96 and we live together. She has some short-term memory issues. But luckily, she is very prideful about keeping herself clean.

She has always worn "panty girdles" and for years has worn the thick Poise pads and changes throughout the day and a couple of times at night.

There have also been times along the way with UTI's, a lot last year because I think she wasn't on the antibiotic or right antibiotic long enough. So far six months into this year, knock on wood, she has not had any. The symptoms are frequent urination and increased confusion. Elderly do not so much have itching or discomfort as symptoms. I bought the urine dipsticks to every now and then check whether a UTI may be starting and get it checked with a lab test right away.

As far as your mom, because she does not live with you, and "that part" of your family does not seem to want your input, honestly, I think you will just have to let them deal with it.

And as far as what you did when they were at your house, I think you were perfectly in the right. And if it were me, I would be prepared if/when they visited again and place some of the large thick cloth pads (check Amazon) and lay it on whichever chair your mom uses as well as on the bed. And I would insist on her using them, or I would be "too busy" or "out of town" for any future visits. You definitely have the right to have a clean, odorless home. And if they cannot understand that, it is really too bad, but your needs matter as well !

They are in denial, but that doesn’t mean you did anything “wrong”. In fact, the whole incident was bound to happen and at least you brought clarity to a situation that can easily be addressed with incontinence supplies. As for the other issue of bathing, etc., that will be another battle which with they will have no choice.

What a horrible situation, for you and everyone. Your mother needs a visit to her doctor, because it seems more than just incontinence is going on here. Her memory seems to be failing, and the people around her don't seem to be noticing it. Not wear underwear? Is that normal for your mother? Your mother needs some specific medical care, and I hope the family can come to an agreement on how to approach that. You have handled everything as best you could. Perhaps you can suggest a group effort. When my mother-in-law was having incontinence issues I very gently instructed her how to prepare and wear an adult incontinence undergarment (they weren't as easy then as they are today.) She never forgot it, even when her memory started to go. However, she wanted help. The main question here is why everyone else, including your mother, is in denial. Your mother's doctor might be of tremendous help in controlling this, or somehow comfort your mother regarding this not-uncommon problem in our older years. However: you don't deserve abuse from the other family members. Perhaps ask your brother and sister-in-law how they plan to deal with the incontinence, when it gets even worse?

If she hasn’t, your mother should see a doctor and maybe she will do what is prescribed.

unless your family was raised in a barn, they should know basic hygiene and understand that not cleaning up after those accidents is another accident about to happen; not to mention other health issues for everyone.

Maybe your brother and his wife are feeling out-of-control and frustrated at the reality that your mom is declining and they could be taking it out on you? I had this happen to me, too, and it was very distressing. I was made to feel guilty to assisting my mom in her time of need and was told to actually leave her alone in the hospice/hospital to die alone as I was preventing her from dying while I was still there in the room with her. People react differently to situation and I would not take it to heart. You did the best you could and handled the situation perfectly fine. Hang in there.

KeepthePeace,

You're not wrong. No one wants their home stinking of pee. regardless of how much they love the person peeing.
None of this is your fault. Your mother is to blame for refusing to wear an incontinence pad or a pull-up. Your father, brother and SIL are are also to blame for enabling your mother's delusion that she doesn't need to use incontinence protection products. She does. It's not being mean to not want your house and furniture pissed on. Your mother deserves to feel bad and embarrassed if she will piss on the floor, in the car, or on the furniture rather than use an incontinence pad or a pull-up. Your family should be ashamed of themselves to think it's offensive for you to leave the cleaning supplies out for easier access. Do they think it's okay for mom to piss all over your house and for everyone to just leave it?

If I may paraphrase a famous old saying about the proof being in the pudding.

In your case, the proof is in the pee. The pee that's all over your floor. The pee that's all over the car. The pee all over your mother's clothes.

None of this is your fault. It's theirs. You didn't miss anything.

ALos, this is all so new to you that they should also have taken in consideration that this is new to you and that your feeling matter too and... when you were a baby I am sure your mom did let poop and pee all over the floor, you wore diapers and cleaning was done. Dont let them make you feel bad. You did nothing wrong!

I certainly would try to dismiss it and not worry about it.

Juse because mom pees, doesn't mean she doesn't have her brain.

She should have worn pads or Adult Diapers.
It was very inconsiderate of her and I would have thought it would have been embarrassing for her not to keep the pee contained.
Your mom and your brother both new about the problem before arrival and they both should have done all they could for the two weeks they were visiting.

Now, if you didn't explain to them about the type of flooring you had and that it would seep in to the stone, then that's your fault as they probably just thought it could be wiped up.
As far as leaving the cleaning supplies out, that wasn't really necessary as that seem like you were trying to make a point you could have just left out plenty of extra paper towels and a cleaning spray bottle in the areas it was happening in so the wet pee could be wiped up as soon as it happened.

You can send a card and let them know you're sorry they felt uncomfortable and then tell them that you should have told them about how your floors suck up the pee.

But, I would also mention that your feelings were hurt because you didn't see mom trying to help matters out by wearing pads or Adult diapers to help the situation and that urine has a strong smell and that people around the smell, get use to it and don't realize how strong a smell it is for others.

Dr. Kubler-Ross explains the usual process of adjusting to loss - and your mom's decline is a loss.

Stage 1 - Denial
Seems most of the family is in this stage. Either they deny there is a problem/loss or ignore the problem/loss.

Stage 2 - Anger
When people argue, accuse, get mad... they are expressing that they don't like this problem/loss. Notice that there is no dealing with the problem/loss. Notice that there is no acceptance that the problem/loss is permanent.

Stage 3 - Depression
People realize that their IS a problem/loss and that it is permanent. Your mom might cry. People may be withdrawn.

Stage 4 - Bargaining
People try to "fix" the problem to make it go away. Some may try praying "real hard" to make the situation go back to the usual. Others may try quack cures to try to achieve the same results. None of these efforts actually "fix" the problem/loss.

Stage 5 - Acceptance
Everybody agrees what is the "new normal" and that the problem/loss is permanent. Efforts are made to live life and incorporate methods that deal with the problem/loss as is. You and your daughter are in this stage.

Whoever is the primary caregiver/decision-maker for mom needs to have her evaluated by her doctor and maybe a urologist. There are short term and long term causes for urinary incontinence - and most are treatable. There is also pretty incontinence underwear that your mom can wear. When she is at your home, it may help to try a toileting routine: suggest she use the restroom every 2 hours while she is awake, follow-up with skin care to her bottom (and maybe a few other areas since she doesn't routinely bathe), and fresh undergarments as needed. Puppy pads are a good idea on chairs and beds, but may cause a slipping hazard on floors. Try a plastic or rubberized mat around the toilet that can more easily be washed. Since family is overly sensitive about "mom's pee problem," try to find discreet ways to keep supplies for her and clean-up close at hand but not obvious.

I know communication is hard since everybody is at earlier stages of grief/loss. Try calling whoever is the "gentlest person" in the group. Apologize for offending everybody (since that definitely wasn't your intention). Explain that you and your daughter were trying to find solutions to what you considered a temporary problem. With as much concern and empathy/sympathy as you can muster, explain that you are concerned about mom's urinary incontinence since medication, medical treatments, and some lifestyle adjustments can help make this easier on everybody. End with expressing love and hopes that they will visit again.

If they didn't like the good job you were doing, they should do it themselves if they think that they can do it better. My family does the same thing to me- awful, isn't it? Incontinence is just a fact at this point. There are cloth pads for this, diapers, etc. I'm so sorry your family is giving you garbage for just trying to help (and sounds like being the only family member that's helping!)