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Our Ma has Alzheimer's and dementia, but she's also 89yo and up until recently, was able to do most things for herself when it came to toilet use, but recently on occasion it seems impossible to get her to clean/wipe herself well enough, so I help her. Hubby (& it's his actual Ma) thinks I might be making her less independent by this. When is it time to step in and over their (Ma & hubby's) embarassment in the name of cleanliness & good hygeine? & Any suggestions on how to soften the blows of all this sort of negative/gross-but-real talk?? Any advice is greatly appreciated

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I think there is no making it worse, it progresses at its own pace.

You can't let her hygiene go, that is one of the 1st things that suffers with dementia.

Help her do everything she can to the best of her ability and then step in to ensure cleanliness and hygiene are good. Tell hubby that UTIs are a nasty result of bad bathroom hygiene and it is easier to deal with a clean up then a nutted out system full of infection that can be deadly.
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‘Doing too much’ may not affect the progression of dementia, but could cause other effects. One is cutting down on ordinary physical activity, if you run instead of letting Ma get there at her own pace. The other is letting her get accustomed to being waited on hand and foot. Older people can get quite demanding, and it’s hard to cut back on what you do, once you have established a pattern.

Cleaning up bowel movements is very important for avoiding UTIs, and there are lots of posts about it. They include using wipes (which can do a better job than toilet paper, but please don’t put them in the plumbing as they cause fatbergs), and a whole range of bidet-type attachments for the toilet. You might even find it worth the expense of getting a real bidet – I love mine, partly for this reason. If you click on ‘care topics’ on the top right of the screen, you will get an alphabetic list. Scroll down to Toileting, and you should find lots of suggestions that might help.

Good luck, and please say to Ma that at age 71 it is an issue for me too. It's just something to cope with as our bodies get older.
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Tough decisions we have to make. When to step in? 

Not just toileting but any activity. I’ve concluded that for a given situation or activity there are 3 points in time: 1 when the potential problem is first observed, 2 when intervention MUST be performed, 3 an intermediate area where intervention should occur. 

I think of it in terms of stress. If the problem is let go till it must be alleviated the stress builds up and gets absorbed over all that time. I visualize a straight line curve of stress vs time and the stress absorbed equals the area under that curve. If the problem is resolved at some intermediate point then the curve is shortened and the absorbed stress is much much less. Multiply all that times the number of problems = total stress you absorb during your care giving career. Less is best, right?

The observation is one point on the plot (Initial point); the must point is also one point on that plot (End point); The should position is variable ie has finite length. So the intervention may be a bit too soon or a bit too late for one particular problem but the goal (mine) is to outlast the whole thing by minimizing the total absorbed stress over time. Selfish? Not really because if you lose it it’s all over for both the care giver and the care givee.
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My Mom (93) has many small bowel movements (mostly morning) and I go in the bathroom and clean the toilet every single time she goes for sanitary reasons.  I use the Lysol wipes and keep a small trash can in the bathroom where I throw them away.

Prior to my Mom getting dementia she always cleaned up after herself, now she's simply not aware of the messes she makes (including her sheets). 

Right now my Mom does walk into the kitchen to get herself a piece of cake and either water or apple juice.   I help her when she really needs it then there are times when I ask her if she could get what she wants by herself (tasks that I know she is capable of doing).

The only problem I have been having with her hygiene is getting her to take a bath (she hates showers).   And the reason is because she wants to take a bath herself without my help which is too dangerous (I know she hates depending on me for everything as she has expressed to me that she is losing control of her life).   I tell her that I do not want her to fall down and end up in the hospital and she's happy with that explanation.  

Doing things for our parents has nothing to do with speeding up the progression of Alzheimer's or dementia IMO.
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We have had a bidet for years.
For Christy, we have to rely on the sound of the water spray hitting crevices, but she is always clean.
A wipe with a dampened terry washcloth reveals no residue.
Terry washcloths go into a proper bleach solution to be washed.
Toilet paper just spreads bacteria.
Your finger might tear through toilet paper
I had to use wipes when I was in the hospital. Why do we do that?
I started having the nurses leave a stack of terry cloths near the toilet.
A wet terry cloth would be better for everyone and plumbing.
Christy has not had a hint of UTI since 2015

The bidet spray also can stimulate the anus to release stubborn turds.

https://www.brondell.com/bidets/bidet-toilet-seats/
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I don’t feel you are going to make a difference as far as how the dementia progresses. Obviously she needs help and caring for. You do care by doing what is needed and are continuing to care by reaching out on this forum.

My mom doesn’t have dementia but does have a neurological disease, Parkinson’s disease and she needs help bathing and help with other things too.

When she had home health her occupational therapist and physical therapist, plus her nurse told me after her evaluations what she was capable of doing on her own and did instruct me to back off because physical movements are important and if she stopped all movements that she would lose muscle mass.

So from a physical point of view don’t do things for her what she is capable of doing on her own.

We get so used to doing for them we go on autopilot and don't even realize it.

Plus in my mom’s case with Parkinson’s disease, her movements are so slow and rigid that it was quicker if I did it myself which wasn’t the best thing for mom, kind of like allowing a child to grow to do things for themselves. It is necessary for a child to learn to do things in order to grow and become independent. Well, it’s necessary for the elderly so they won’t lose muscle mass.
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Dementia is neurological not behavioral. They do things , or don’t , because of brain damage . If she’s having a problem with normal hygiene she can develop a urinary tract infection that can cause her dementia to become worse. My stepfather actually died ( Alzheimer’s) because a bladder infection started him on a downward spiral he never recovered from. According his neurologist that happens frequently.
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NeedHelpWithMom May 2019
Janner,

My mother’s doctor and nurses have always stressed the importance of good hygiene. You are stating an important message to the OP. Thanks for sharing your experience. Sorry about your stepdad. Hugs!
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If she Needs Help and Assistance, Of course, You need to do this...I don't feel it Speeds up anything but Helps in this Quality of Life for her because Her Heart is feeling Good you are There to Care.....
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Eventually she will lose all control of bowel and bladder and needs help. When it gets nearer the end of life they get a lot of urinary tract infections (UTIs) no matter how spic-and-span you clean them. Eventually the antibiotics will stop working..and get reinfections frequently.
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My advice is Help her because if she could, SHE WOULD.  I just lost my husband (90)  had it for 18 years.  Alzheimer's has no voice, the pride is still there and therefore it is difficult for them to want help.  I had the same problem with my love,  I never said or made him feel that he did something wrong, I always took the blame for what was going on and expressed it to him in a way that we all have accidents or can't do something and that is OK so I well help and we can do this together and you can help me to.  I  wish you the best.
Betty
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everyday8 May 2019
Good morning, Myrainbowsend
I want to take a moment to say how much I admire what you did for your husband. I wasn't always so patient with my dear hubby (he passed away last June) and I regret it to this day. Can't take it back now, but I wish I could have had the patience and grace you had with your husband. God bless you!
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Alzheimer’s disease is progressive. It never gets better, only worse. For some people it’s faster/slower than others. Each case is different. Help her as much as you can because there come a time that she will reject you for no reason at all.
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Best way to keep her brain as lively and alive as you can are things that are a bit new, but fun. Sometimes simple word games, presenting a bunch of letters and seeing how many words you each can make, one at a time. Or a puzzle to put together. Something of interest. Simple things that are things she may always have done are good, as well. Such as folding things to help. But no, you are unlikely to either speed up or slow down the illness, from anything I have learned, and the same goes for the expensive drugs. As to the hygiene issues, they are, unfortunately, crucial, and have to be addressed. Baby wipes are great to have around, but often then get thrown into the plumbing with disasterous effect. So if she is unable to "keep it clean" that is something you cannot avoid. You sure don't want to be dealing with rash, infection, sores, and bladder infections on top of everything else.
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Before doing a task for her, ask/remind her to do it and see how well she does it. One thing that might make the cleaning easier is buy the wet wipes. Wet cleans much better than dry toilet paper. You may have to stand there to ensure it goes in a waste can instead of the toilet, however it keeps her doing things for herself as long as she can. You have reached the point of no return with certain conversations, so you just have them. Think of it as how you would talk with a child. You just do it. Sam's has the best deal on wipes - 5 packages to a box, 12" square, and about $9.
You can also get a bidet (seat/water that installs on any commode - take the old seat off and replace it with bidet unit) and they work pretty well IF she is willing to use it. Check out the Brondell bidets
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Watch Teepa Snow on YouTube. Shes an expert on working with dementia patients.  I wish I had known about her from day one.  I idolize her. Strongly recommend.
Ignore husbands comments. Her brain is breaking. As it breaks she will no longer able to do things anymore. Just like car. The more parts that break, the car is no longer able to work like it used to. Broke is broke.
Do keep her brain active and have her do things she can for as long as possible.
Now please go watch Teepa. 😊
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Let her do whatever she can do for as long as she can do it. She needs to feel needed and like she can to some degree carry her own weight. Sometimes it is hard because you want to do everything for them, but if they are able to do something for themselves let them.

I don't think it is speeding up her dementia, but I do know that they will lose remembered skills over time if they do not use them. Some of it is just the eventual progress of the disease. The loss of brain function and things fall away bit by bit like losing puzzle pieces.

If she is struggling with something by all means help her, don't just let her struggle and get frustrated. If it is anything to do with cleanliness or hygiene you really must help if they can't do it themselves. When I have to do things like this for my mom I try to make it as "clinical," for lack of a better word as I can. Meaning I try to behave as if I were a health professional taking care of something for her. No, not cold or brusk, but I just try to get it done in the most compassionate and efficient way possible. That seems to ease at least some of the embarrassment. Over time that embarrassment will go away.
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disgustedtoo May 2019
This is similar to what I was preparing to post. Anything she can still safely do, even if it takes her longer to do, or may require do over later by you, by all means, let her! That way they can retain some sense of dignity and usefulness. It is like allowing your children, as they grow, to do for themselves or "help" mommy and daddy, even if the result is not perfect or it takes a lot of time.

Offer to step in if you sense she needs help because she is struggling and/or getting frustrated with a task, but offer and wait for response, don't just take over. The only real exception is probably the bathroom issue and that is mainly for hygiene purposes - who needs to deal with UTI and all the fun that goes with it?!?!?! She still has independence to get to the bathroom and do her biz, just needs a little assistance cleaning up.

Hubby needs to understand that female "plumbing" is very different and if clean up is not done properly, the results will be difficult or worse! I would as nicely and discreetly as possible continue to help Ma with bathroom cleanup.

(bidets and wipes may be nice, but those with dementia might not grasp the bidet or even if they remember to use the wipes, they may not remember to not flush the wipes!)
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Helping with hygiene is important. It will keep her healthier in the long run. But be sure she does whatever else she is able to, washing the table after meals, helping cook, folding laundry, simple gardening, basic household chores. It has the benefits of keeping her busy and moving, making her feel useful and needed, and keeping hubby in touch with how much she is and isn't able to do.
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disgustedtoo May 2019
Made a similar post before reading yours! Only added that hubby needs to understand female "plumbing" is different than male "plumbing", and if not cleaned properly it will cause MORE problems!
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At this age, she should know better but doesn't due to the mental issues. It no longer matters if she is upset or embarrassed. She cannot be left in a soiled mess if she is unable or unwilling to clean herself. The cleanliness and proper mode of living comes first. Be very firm and tough and just do it.
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You do what you feel is right and necessary. Everyone will have an opinion, but unless they are the ones taking care of the bulk of the work/ clean-up then their opinion doesn’t count. I cared for my MIL before she died and now my FIL (who has dementia). Everyone loved to come in and tell me what needed to happen but then returned to their lives.
You're living it, you know her abilities. Use your common sense and good judgement to make the right choice for everyone. If they don’t like it, invite them to step in and handle it. All. Not pick and choose. All. You’d be surprised how quickly they decide you probably know what’s best ;-)
Best of luck!
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The lady is not unwilling to wipe herself clean. She is unable to do it and may not even know she has to as her mind is broken.
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Infection from incomplete cleanup is bad enough (gets on clothes, smells, etc, but if Ma has never had a UTI + the possible raving that goes along with it, OR hubby has never witnessed it, he needs to understand this! Some UTIs might not present any signs, which can lead to medical issues or crisis. Assisting with cleanup can be done nicely and discreetly. This really isn't impinging on her "independence."

She can be allowed and encouraged to participate in any/all activities, the more the better, even if it takes a long time or isn't done to perfection (includes needing a do-over later, when she isn't around to see it.) Keeping her active and busy is good and will help make her feel independent, useful and preserve some dignity.
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Hygeine. Purchase a bidet toilet seat.
We have used Brondell for years.
Zero UTI since 2015.
or
Use sopping terrycloth washcloths. We use a cloth corner to corner draw from front to back, both groins. Then a fresh cloth for the center.
Always check for fecal smear at the backdoor. Sometimes there is stuff at the door and it is uncomfortable as well as full of bacteria. It also indicates bowel distress.
(The bidet also helps stimulate the gate, when you have a stubborn one)
No underwear. no briefs. Long dresses and nightshirts.
Sit and sleep on washable bedpads covered with cotton sheet.
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