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.
Does it matter?
Nobody understands better than the people on this forum how incredibly hard and frustrating this phase of caregiving is. You know your mother needs help, she says no to anything you suggest, what on earth are you to do?
Well, the answer is - don't do nothing! Have you contacted your local social services and asked for an assessment? Have you reported her living conditions to APS? If your mother's dementia is becoming so advanced that she can't be responsible for her own decisions any more, there are ways to intervene; and at the very least you need to start getting her onto people's radar and ask for help.
Mom with moderate dementia is at the point she needs at least 24/7 monitoring. Do not stick your head in the sand or get into denial of her condition, which is very common for family early on.
Who has mom's POA? Time to get her the care she needs. Nope, she will not like it, but, it is time. The doctor is a mandatory reporter.
i called the next day, she slept the whole night and was making friends. She is so much better off there than here. She gets physical therapy, has a social group, and also the privacy of her own room to watch tv. They also noted blood pressure issues that I was unaware of, because I didn’t take her blood pressure every day. I was never told to. Her meds were adjusted, and it’s under control. So far this has been a win win situation. Of course they don’t want to leave what’s familiar. It’s so much better for her and for me.
We had a very loving relationship and I can fully empathize with your sisters view, as I did feel Mom was a reflection of me and my ability/willingness/resourcefulness/devotion to help her. But not so much for how other people would view me, but how I would view myself. I couldn’t just throw up my hands and say “oh well, it’s the disease, people understand.” My goal was always to do the absolute best for her I possibly could, and that was the reflection on myself. At the NH I curled her hair every day because I wanted her to look good and feel good about herself. I wouldn’t have felt right being there with her hair sticking straight up, whereas that might not have bothered other people. And of course I learned and grew emotionally as we plodded along together.
My suggestion is to take a baby step and try to find a caregiver who can come in a few hours a day to “visit” with your mom. Maybe just watch tv with her, have lunch together and chitchat. Then ease into more caregiving roles like “let me help you to the bathroom” etc. And I agree with the other posters, your Mom needs more help than she’s getting, and it’s probably going to come one way or the other. Try to get ahead of it as much as you can.
HOWEVER--
Anyone who has had ANY experience with elderly people will not judge YOU for the way your parent appears. You have to shrug it off--as awful as it sometimes is.
I am no longer involved in CG for my mother and never will be again. I don't see nor talk to her (her choice) and so whatever happens or how she looks or smells--has zip to do with me.
I have friends whose daughter is married to my brother--mother lives with them. These people are on my case constantly b/c I don't take better care of mother. I cannot get them to understand that even when she WAS 'functional' she wouldn't let me help wash her or really clean her apartment. They just think I am horrible. And they let me know it, every time I see them.
Um--what about the 3 sibs who are 100% MIA and do and have done ZERO for her over the past 7 years that she's been 'bad?" They all get walks b/c they don't
live close by'.
It's a conundrum--I could not make mother bathe often enough, nor wash her clothes properly, nor have a chair cleaned that she'd peed in so much it's rotting....I just gave up.
If I knew of someone like that, I would report it, so the person could get some help, whether or not their family was aware of it.
I don't mean to sound judgemental cuz I'm sure it's easier said than done.
Please look up ADLs. Basic and IADLs (Instrumental Activities of Daily Living).
Hygiene is the first to go. It will have to be addressed and sadly other issues will follow.
Go over the list. I’ve attached one. It’s a list of the things mom is going to need help with as time goes by.
Even the most resistant can become compliant with a little (or a lot) of encouragement.
You and sister are her next of kin right? If you don’t help her, who will?
She’s lost or is losing her ability to care for herself. I’m not saying you have to be hands on. But someone needs to manage her care and get her the help she needs.
https://www-tc.pbs.org/wgbh/caringforyourparents/caregiver/pdf/cfyp_adl_checklist.pdf
We set up someone to come in for 4 hours every day from about 9 - 1. Then we had someone come over every night from 6-8:30 to help give her a shower every single night because she had huge incontinent issues, both bladder and bowel and would only wear poise pads. Urine would soak into her chair that she slept in, even with pads. She'd get up from her chair and would pee and poop (she had diarrhea which she had no intention of trying to control because it helped her lose over 100 lbs.) When we were back in town we could smell her 3 rooms away. It was horrible.
And she fell a lot. The ambulance service went over 3 times in one week. We were in Germany at the time and they sent me a FB message to call ASAP. We talked and they wanted to give us a heads up that they were calling APS. We told them to go ahead. Maybe it would be the wake up call that she needed to go into Assisted Living.
We thought HOORAY!!!! And they came. While they were there one of her care givers were there on their regular schedule. Although it stunk to high heaven, she had people coming in twice a day, she answered questions correctly ... they said there was not one single thing they could do even though the police and ambulance service both turned her into APS.
That was in October of last year. We came home for Christmas and asked her to please go into assisted living, just to get her strength up so she could walk without falling. We told her after she had 3 months there with no falls, she could some back home. She agreed. We found a very nice facility and they came to evaluate her and said she absolutely did not qualify for AL. It had to be a NH.
This has been a huge weight off our shoulders. She has gone downhill ever since though. Actually called hubby yesterday saying she wants to go home because she is being abused by the NH. She is not being abused. It takes 2 of them now to get her out of her chair to go to the bathroom. She said 2 times at night when she hits her call button they have stepped on her toes while trying to get her up. They want her to wear her shoes when she gets up and she thinks this is abusive. She never wore shoes at home (yep ... walked right through urine and poop all the time and didn't care).
Sorry, I guess I'm rambling too much. Anyway, my point was sometimes APS just doesn't really seem to do anything. :(
Was it the falls that finally clinched her agreement to "convalescent" care?
Pretty aggressive without knowing a persons finances or do you think it's really that easy.....
Does your mother not have any caregiver.?
You may want to call Hospice and get them involved to help guide you, they'll come in and do an evaluation, if your mom is against it try and put the spin on all the positive things she could gain from them coming in to help her.
At a minimum they'll be able to guide you through whatever process will best suit you loved one.
First, let me tell you I have been caring for my mother ALONE for 7 years now. She has dementia, and is now well past "moderate dementia" as you say your mother is, so I know what you are going through FIRST HAND. This is the most difficult responsibility I have ever had in my life.
Yes, this is a bad look for the family. Your mother can NO LONGER think clearly, so you and your family must carry out what she no longer can, no matter what she says. Her hygience is ESPECIALLY important and here's why. If she does not already...it is almost inevitible that she won't attain a UTI, no matter how clean you keep her privates because she has to wear the disposable panties. UTIs create BIG problems and requires special treatment. UTIs can really cause your mom to act out strangely and will need to be treated with anti-biotics (which is only for a period of time) and then I have been given another med to assist with treating my mother's UTI. I get my mother labbed every three months to see how her UTI is doing, you MUST stay on it. I didn't even know what a UTI was until my mother had it and had NO IDEA, it could cause such problems, so PLEASE, get her a lab done for UTI, keep her as clean as possible down there, and get to know her pee pattern, so you can ensure her disposible panites are changed often and she is not wearing a urine filled pantie longer then she needs to.
Finally, I know my mother liked to look nice before this awful disease attacked her. She was very considerate of her outward appearance, as a matter of fact, that was the first sign where I noticed something was off with her becasue she no longer cared about how she looked. As I care for my mother (and again, I want to highlight that this is not easy, it is only due to the grace of God that I have lasted this long and haven't jumped off a bridge, and I am not joking when I say that), I want to treat her the way I would want to be treated and the way I KNOW she cared for herself before dementia. So please think about those things, talk to your family and KNOW that I have added you to my prayers when I pray for others and especially those like me, who care for loved ones. OH, one last thing. Rehab facilities ARE NOT, repeat, ARE NOT good for dependent individuals such as dementia patients. They do not have the staff to do it correctly, and HONESTLY, they do not care. They do the miminum required to keep their jobs. I also know this first hand.
Blue Skies,
Angela
Try and Make arrangements for Mom to be Looked After More or Consider a facility, Get her Affairs in order before going There.
I Care...
People with dementia hate to shower because of the sensory issues that go along with it. There is a perineal spray wash you can use so you can at least wash her privates, it's literally a spray and you wipe it away with a washcloth. There are also body wipes that don't need rinsing like the kinds they use in Rehab centers when people can't get in the shower. At the very least you could try them as they are not as shocking as the water in a shower is and they can still get the job done. Some can be warmed in the microwave for 10 seconds just so they aren't cold.
But even with all of that, your mother needs someone there with her everyday because let's face it, you go to the bathroom everyday all day long. She can't do it herself anymore.
Her incontinence issues may be an undiagnosed UTI. Her unkempt appearance shows she no longer knows what to do or is depressed and doesn't care.
Her appearance is not a reflection on you, but symptoms that life has gotten to difficult for her to do alone. Please have a family meeting to discuss mom's care and get her help - either a new place to live or help so she can stay at home.
Sometimes we just have to play the cards we're dealt.