My mother has more moderate dementia. She lives by herself and refuses to go in to a memory care facility. She is incontinent and will not wear the Depends I got her so therefore she smells like urine and will not change her clothes or clean up. My sister thinks it is a reflection on us that she smells like urine and looks unkempt. I say if anyone knows anything about dementia, then this is part of it. Does anyone have any feedback on this? I don't believe it makes us look like bad children if my mother flat out refuses to change her clothes or bathe.
The only thing, for your sake as well as mom's comfort I'd be concerned about is the odor which does get obnoxious for all. I'm grateful we don't have that as it could be the tipping point.
PS: I laid out 2 nice outfits for mom to pick from to come to their 70th anniversary lunch...and she put on a resale shop special. I was not happy, but decided who cares. I heard from a former coworker who said someone she helps insisted that a bathrobe was a coat and rather than argue, they took her to church that way. The world did not end!
Your local alzheimer's assn may be of some help, and they if nothing else have some cards that you can pass discreetly that say "my companion has alzheimer's /dementia; thank you for your patience.
From another good daughter to another...carry on:-)
everywhere!! We lived out of state and would go and wash everything when we could. After my dad passed she lived with me a few months. I quickly saw how bad her hygiene was and she kept infections. After a few month we moved her to assisted living. Like another post mentioned, they said don’t bring panties and she will start wearing depends. She transitioned better than we ever thought. Her infections were less. She always wanted her hair fixed and i tried to keep her appearance looking like I knew she would want me to if she had her right mind. Other families always commented on how nice she looked. Some could hardly believe she was as bad as she was because outwardly she still held a nice appearance most of the time. Of course if she was having a bad day, we didnt force her. It definitely takes work but it’s worth it. Best wishes to you on this journey... a doctor told me enjoy today because it doesn’t get better and he was so true.
He has often gone out into the community unshaven with a summer shirt and wool pants...but I will take that over just lying in bed. It's not the end of the world...and also gives us something to talk about and him to think about other than staying in bed mourning my mother.
I find this time frustrating...especially when others who aren't in your position stand outside and want to judge what is going on. Those of us who are caring for a loved one know there are about 100 nuances to every situation.
I think others have given you some great advice. Of course, you don't want your mother's skin to be infected or, heaven forbid, develop a UTI because she has developed some bacterial infection. But if it's just about "the look" or even the minor smell, then I say you're doing the best you can under difficult circumstances.
If your sister is so smart, let her take the tasks on and see how it goes!
It isn't a reflection on you, it's the dementia. However, it isn't healthy or safe for her to continue like this. Mom would say she was "fine, independent and could cook", none of which was true (only in her mind.)
As for those saying to get/use POA, this DOESN'T allow you to force her to move or accept aides. Our EC atty told us this and suggested guardianship (expensive and time consuming!), but the place we chose for her wouldn't accept "committals." We planned the move and just before that she developed cellulitis. She didn't have enough sense to know she needed to have it looked at and treated! It delayed the move a few days, but YB used it to create a ruse (fake letter from 'Elder Services'.) She was angry but went with the move.
Our mother isn't really incontinent, but sometimes can't get undressed fast enough. She refused to use disposables, so we removed her undies and replaced them (she was in MC then.) The first UTI manifested as being out of control! The more recent one was detected after many extra charges for cleaning her, her clothes, bedding and the carpet. She won't go when they suggest or try to get her up at night. Like your mother, mom was refusing to go to doctor appts. Even now she will come up with everything she can think of, like a 2 yo, to avoid going! There are home tests you could use to test for a UTI (also get one of those "hats" to place in the toilet, to collect urine.)
You and your sister (any other family members?) need to make a plan. Just saying mom is stinky or unkempt being a reflection on you isn't cutting it. Having POA will allow you to take over things like finances and be involved in medical decisions, sign paperwork, etc., but if you don't have it already, it may be too late or she could refuse. Do either of you live nearby? If so, you could introduce aides as friends and be there when they come. If not, it isn't likely this will work. Your mom can refuse to let them in (ours did!) The only other option, short of guardianship, is find a way to get her to move to MC. This may require trickery - say major work needs to be done on the house, tell her she's won a free vacation, fake letter from APS, whatever works!
I wouldn't resort to calling APS as they could turn it around and blame you two. It isn't going to be easy or pretty, but it will need to be done. You may have to get an EC attorney involved. Does mom have assets to pay for AL/MC? Does she own a home or is she a renter? If no assets, Medicaid can be applied for the facility, but it will not pay for legal help.
See my "reply" for comparison to behavior (not enough characters left!)
She, like your mother, refused to move anywhere. This is despite often mentioning moving to AL at some point. When this was suggested, she flatly said she would NEVER live in a place like that! She used to go to all the open house/free lunches in local places, and would say they were nice. She also wouldn't consider offers from brothers to have her move to their place. I chose not to offer as my house wouldn't be accessible to her, is only half "repaired" and I can't support her weight.
We installed cameras to monitor during the initial aide attempt (none of us live close enough to do daily checks.) These were at the front door (in/out) and finished basement. While she "seemed" okay, over time she developed this OCD behavior checking the door, sidelights, dishwasher and LR over and over for 1-1.5 hours before bed! Most likely this was her manifestation of sun-downing. I also noted she started wearing the same outfit days in a row, once up to 6 days! While I don't consider this a huge issue if the clothes are clean, this was a woman who ALWAYS had a different outfit on every day! When one brother was visiting, he pointed out that she had ice cream stains on her clothes. She just laughed about it.
Our mother had more clothes, shoes, handbags, jewelry, etc - enough that we could open our own store! I didn't realize how BAD this was until we had to clear the condo out. She would have a different outfit for everyday or special occasion, yet resorted to the same set of clothes, not even the 'nicer' ones. She was also previously one to eat proper foods and could make elaborate meals. It wasn't until I recognized that she was having issues with memory and we attempted to intervene with hiring aides to come in how bad it really was (she also lived alone.) In her case, it was partly hygiene and dressing with new clothes, but also in food choices and personal care. Not being there every day, I can't say what else might have been a problem. We did find what is likely pee spots on the floor. Not sure how many sweets she ate (she did like them at this point!), but after taking her car away and helping with groceries, it was clear she was no longer cooking - mainly frozen dinners and packaged stuff.
Replace your mom's TV viewing with the newspaper and/or magazines and sales catalogs. She did used to watch programs, and the evening news, but likely stopped that when she couldn't control the remote.
So, definitely these are manifestations of dementia and need to be addressed. Her refusal to have help or move will require some finesse. Sister needs to step up and come up with helpful ideas rather than just saying it is a reflection on either of you. She also needs to understand that these issues are a result of the dementia - in their own minds, they are fine, they are doing all the ADLs, but clearly she isn't.
One other note - whether yourselves, aides in home or MC facility, mom can't be 'forced' to shower/change. Even with dementia, they have the "right" to refuse. Any capable aide/staff know how to coax and cajole to get compliance, but it may not work all the time!
It isn't about being stubborn, selfish or not caring, they don't KNOW that they are not caring properly for themselves!
Agreed being unkempt and/or smelling of urine it is not a direct reflection on the family members, but it is something that needs to be addressed, and it HAS to be more than just allowing them to sleep in their own shit. THAT is irresponsible.
Family also NEEDS to get involved. That doesn't mean they have to take her into their own home or move into the person's home, but you can't just ignore the situation. It isn't easy to bring in aides or get the person to move, believe me I know first hand how that goes. But allowing it to continue as is would be wrong (and could result in charges, if authorities get involved.)
Our mother cooked good foods, and wore a different outfit every day until dementia snuck in. In HER mind she was still FINE, INDEPENDENT and could cook/care for herself. She had NO clue that she wasn't fine, independent or could cook/care for herself. She refused to let the aides in after a couple of months and refused to move ANYWHERE. Stubborn? Yup. Selfish? Some. Not caring? Hardly, but again, in HER mind she WAS taking care of everything. SHE had planned to move to AL when the time came, but with dementia that changed.
WE have to understand all this and take charge to make the changes happen. Difficult? Yes. Impossible? No.
Dementia is not for the faint-hearted, but ignoring the issue or chalking it up to being stubborn, selfish or not caring is wrong.
If it was my mother, I wouldn't care what other people think. Maybe you could purchase diapers that look like underwear.
I am so sorry you are going through this. I have never dealt with Alzheimers hands on, but have friends who are taking care of parents with it. It is an unfair disease and my heart, thoughts and prayers go out to your family.
DO NOT ASK HER ANYTHING DIRECTLY - rather give her a choice on 2 or 3 things all of which are better than what is going on - when a person is given a choice they feel in control of their lives & if possible praise her choice as good - after a short time she will feel less badgered & yammered at so might be a bit more co-operative
Who does her laundry? - because some can get lost on purpose - if she has 1 outfit she loves then go to thrift shops to see if you can get the same outfits & switch them for her - this would mean going in when she is asleep to do this - if she is sleeping in the clothes too then she is worse than you thought
From what you say, it is just a matter of time before she needs a higher level of care so start looking - do not ask if she wants to go rather say it is temporary until XXXXXXXXX is taken care of in her house - just pick something that is necessary even if you have to shut off the water main & she can't stay were there is no water! so then she needs to go to a centre 'temporarily' until it can be discovered what the problem is
My mom thought she was in a re-hab place until her hand got better & when she was moved she thought it was a resort because the staff all said the tub room was 'the spa' - it is all in the approach & terms you use - calling a room a 'suite', a dress an 'outfit' & so on - even with kids if you given a 'reward' or is it a 'bribe' same thing different slant on how it is perceived
Always remember a person with dementia reacts like a 3 year old but with more life experience - they are ego-centric to the extreme & only care for want they want - ask yourself 'if this was a 3 or 4 year old would I leave them in the same situation?' if the answer is no then do something now
I had to tell my mom. She had always been very particular about her appearance and I knew if it weren't for the dementia, she would realize that she wasn't quite keeping herself well groomed. I told her she needed to shower, wash her hair, wear deodorant, change her clothes, and change the Depends more often. She had the ability, the toiletries, the access to clean laundry, etc., she just didn't seem to realize it was becoming a problem. Unfortunately and unfairly, it does reflect on you. She doesn't know any better anymore, so someone else has to be responsible. If she were in a memory care facility or assisted living, they would be responsible and I would imagine you would be a bit leery if you went to visit and she looked disheveled and smelled like body odor and urine. If she's living alone, she probably shouldn't be. It's very possible a neighbor, pastor, or friend might contact social services regarding her condition. Or, if she has frequent falls and has to go to the ER, they might get a social worker involved. You'll have to take the bull by the horns. It isn't easy or pleasant and it hurts to have to parent your parent, but it sounds like she really needs some supervision.
Perhaps ask doctor to order some in-home health assistance - a couple of baths a week. Or pay yourself and tell her the dr said these thing have to happen if she wants to live at home. Maybe someone else, besides children, saying it will help. If that works, maybe you can get a few hours a day of housekeeping so that someone has eyes on her during the day.
It's possible with memory problems, she might think she just took a bath earlier or last night.
I have many years experience and please believe me it is not a reflection on you. It is a sad part of her condition.
Hugs 🤗
No wonder elders don't like wearing such products. Hope someone comes up with a better cooler product when it is our turn to wear such garments on a regular basis.
PS - you might try pulling the carpet up in some sections and in others, lay down plastic runners so you can wipe up the urine with a mop instead.
https://www.amazon.com/Always-Discreet-Incontinence-Postpartum-Disposable/dp/B0721JR6Z5/ref=sr_1_3?keywords=pretty%2Bincontinent%2Bpanties&qid=1566887079&s=gateway&sr=8-3&th=1
It seems standard that they don't want to shower. When I went through a period where I was completely exhausted the idea of taking a shower seemed like overwhelming work. Had someone offered me a bowl of hot soapy water I could have done something with that. People that come in once a week to bath the person would be an option. They have ways to cajole the person.
My sympathies go out to you.
Hang in there!!
Deb C