My mother is in a NH. She has been there almost three yrs. I don't know where to start. She had a stroke 10/8/19, which showed she had a brain bleed on right side of brain. She regained her strength in about 2 wks. She has not used walker for over a year. However she has been able to get from bed to w/c to bathroom etc. and had been going to bathroom as needed. After the holidays she has been eating a lot less and her incontinence has gotten worse. Since after the holidays, I go every day. I find her most of the time lying in bed not wanting to get up, not eating, at times refusing meds and refuses help from aids to clean up and change clothes. With me going every day, it is hit or miss as to whether I can get her to bathe and change clothes. I find her soaked in urine many times and do my best to clean her up. I need to mention that even though her dementia is bad, she knows to say NO! She refuses help from staff and when I visit, most of the time I am able to change her. At this point I have noticed, she does not know she has wet herself and her bed. I am at a loss at what to say or do. With me visiting her every day, she does not remember that at all. The NH said they had thicker pull ups or diapers, but I have yet to see them implement this yet. They never seem to have some products needed for residents on hand. I have purchase myself. I am at my wits end at this time! Anyone have suggestions on how to deal with this situation. I do have a meeting with the staff on March 4th. I do plan on having a list of my concerns. Would appreciate any thoughts on this matter!

Thank You!

I'm a little bit confused as to what constitutes a nursing home in some areas, your facility seems to be run like an AL with some limited added services. To me people are in a nursing home because the require a high level of care and oversight, your statement "Mother too weak to do shower. Her bathing done at sink" would never happen here as a minimum 2 baths a week - provided by aides - are mandated. Here patients must give up a degree of autonomy in exchange for being physically cared for, nobody is lying in a soiled bed because they refuse care, at least not for long because a strategy would be developed to deal with it. I question whether this facility is even able to provide the level of care she now requires - are there other options available near you?
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Reply to cwillie

If your mom is in a Nursing Home there is an assumption that she needs some very specific interventions regarding her care.
Keeping her dry is essential for maintaining healthy skin, as you obviously know.
It seems from what you’ve described that her personal resistance to being changed is sort of allowing the staff to avoid doing what you are paying for them to do.
In my part of the USA, Medicare does NOT pay for pull-ups or disposable underwear of any kind. Could the staff have been told to change her as infrequently as possible to avoid using the disposables that SHE NEEDS?
I always bought the underwear my mom needed in a similar situation because the underwear used at her NH was RIDICULOUSLY EXPENSIVE compared to what I was able to purchase for her in a nearby drugstore.
If she is REFUSING care, might she benefit from a small dose of medication to allow her to become more compliant? Have you asked about this?
At this stage of her life, her physical health might be compromised to the point that her mental condition might need to be addressed for her own welfare.
There were times when my mother was medicated to reduce her horrific anxiety. Although I disliked the fact that she would sleep more while taking the medication (Xanax) it DID the job it was supposed to do.
It sounds as though you’re trying to do many of the things that should be staff responsibility. Since you have acknowledged that your mom doesn’t always behave as you’d like, you may have a way to introduce the topic of medication in your next meeting with the staff.

Hope you get some satisfaction with solving this.
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Reply to AnnReid
Beachgrrl Feb 15, 2020
I provided mothers pull-ups. Have from beginning. I have talked to hall staff, SW & DON about my mother’s decline and needs. They started antibiotics yesterday in case she has UTI. She has been medicated in the past to do test. They medicated her yesterday to try straight cath. Didn’t work.
Before mother had stroke, she took meds, went to bathroom etc. The end of January is when this downward spiral started. Between now and meeting time, I will keep up the fight till they do as you said, do what you get paid to do!
i have tried to cut back to encourage them to do.
Thank you for your input!
Are her meds in pill form that she’s refusing? When Mom started having issues about taking hers, they ended up grinding (or sprinkling) them onto a spoon or 2 of chocolate ice cream. She hated the applesauce they first tried to offer, but would do just about anything for ice cream. It worked most of the time.
Regarding bathing, they showered mom once a week which was fine with me. The other days they cleaned her up at the sink in the morning. How they approach these tasks is very longer “Ella do you want to get cleaned up?” It’s “Ok Sunshine, it’s time to get up and dressed.” The end. I used to get there by 10 am and if she wasn’t cleaned up and dry there was hell to pay. The timing and expectations should be documented on her care plan. Unacceptable to find her wet, (unless you’re there at 6am before morning rounds). Make sure they know that.
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Reply to rocketjcat
Beachgrrl Feb 14, 2020
They grind mothers as well.  Put in applesauce.
Mother too weak to do shower.  Her bathing done at sink.  I was told that if mom refuses help,  they are to approach her again, keep trying.
I am meeting with doctor this morning to see what he says about other options.
I'd be ready for the meeting after gathering all the information you have, but, I'd likely be vocal about her need for changing before then.

Have you spoken with her doctor about her behavior? It could be that in addition to the dementia, she has something else going on. I'd have them check for UTI, vitamin deficiency, other infection, depression, etc. She may be depressed and need medication. I know that medication really helped my LO, as before that she was bound on sleeping most of the day and didn't want to get out of bed. (This was before she had progressed far into dementia and placed on hospice.) I'd check to see if she has any skin breakdown, rash, etc. as well.

I'd insist they put the higher absorbent diapers on her at night and I'd show up first thing in the morning to confirm that they did. There is no reason they can't get this part of her care right. And, I'd insist that she be checked and changed at least every two hours. When my LO went on Hospice, they put signs over my LO's bed to do these things for her changing. And, so far, the staff at MC have complied. I'd be nice about it, but, adamant that I expected them to provide this care.

If correction is not made, I'd consult with the Ombudsman for the facility. Their name and contact information should be posted on the wall of the facility. They are bound to investigate the violation of the rights of residents. Keeping her clean and changed is not only a health issue, but, a matter of her constitutional rights.
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Reply to Sunnygirl1
Beachgrrl Feb 13, 2020
I spoke with the doctors assistant today.  They are going to do labs tomorrow, try to get urine sample today. She does have a rash, but I have cream for that.  As far as depression goes, she has always been depressed. She was on meds for this and they even increased her dosage. But , for over a week now she has been refusing her meds, so the depression issue cannot be addressed for now.  However, I was told there is a patch they can put on her that may help.  No one had ever mentioned this before! Mother is also receiving Hospice Palliative Care.  Mother also refuses help from them most of the time. I have talked to the DON about the changes with my mother. With that being said, the staff is suppose to do revisits each time she refuses but it is not working!  Before my mothers dementia got really bad and when she was home she would refuse in home care as well. That is why she is in NH now. We are also going to look at giving meds in liquid form to see if that works.  I'm not giving up yet.  We will see what happens after the meeting.  Thank you very much for your input.  I do appreciate it!
Another thing.  In her NH, the nurses and aids are different.  They have used agency employees to have enough staff.  So there are not familiar faces all the time that works with the residents.
This is the first time I am writing on this website. I will give you a little of my background and then try to help with your question. I am a caregiver to my father with end stage vascular dementia. My siblings and I shared the job of care giving for five years after his stroke and then he lived with me for a year when he needed 24 hr care, but a few months ago we moved him into a memory care facility because the needs became so severe. My father was always a very giving and loving man, and extremely independent and strong willed (which I always admire about him). Although when the dementia started, he outwardly became agitated and angry on a regular basis and his will and independence made it hard for us to help him with anything. Most times pleading for hours just to get him to stand up so I could change him. Trying to get him to do anything he didn't want to usually turned into strong arguments and anger on his part and tears on mine (sometimes tears on his too!). Believe me when I tell you I understand. Although my father's continence issues are different...My father had neurogenic bladder since he had his stroke. This means every 15 min he needed to use the restroom, but couldn't. He is on meds to help him flow better. With the dementia increasing he now flows easier, but still recognizes that he dosent want to urinate in his pull-up and mentions urine somewhere in hi talk...and that lets us know he has to go. He will naturally stand up at times (but dosent know where, or sometimes what, a bathroom is). Although other times we will find him sitting in his wheelchair soaking wet and freezing. Makes me so sad, and angry, that no-one at the facility noticed. Or they did, but he is most times a hard one to change. We as a family have one or two of us going to the facility daily. Here is what I have seen work with my dad. Don't try reasoning "per se." In the earlier stages I tried reasoning and it just led to more argument. Now I try to find anything that is wrong and relate to that. Or use any word he says to lead to him getting changed. Like he is cold, so I don't speak about the urine and just use short sentences saying, "Your cold. Im cold too. Can we stand up so we can get warm. Please stand up with me." (He dosent always understand what "stand up" means). Since he is concerned with my welfare he will sometimes stand up if I need him to "for me," not if I tell him to "for him." If he seems even a little like he might, I just try to prop him up very softly with a hug and push towards standing. Sometimes this works. Then I continue with that explaining, a little, when I start to change him, 'that I am just getting him (or us) warm.' I don't know what stage your at with your mom, but I got to the point where I would have to read my dad. If it seemed he was really agitated with me trying to change him, then I would wait and try again later. If he was only somewhat resistant, but I could somehow get the pull up off and new clothes on, then I just powered through it, even while he yelled that I was killing him. Remembering I am helping him, even if he doesn't know it. Sometimes during, but always after it all is done I give him a big hug and tell him how much I love him. With this stage of dementia words make very little sense but touch and vibe is still something they relate to.

Also, make sure you know the head nurse at the facility. This helped in my situation a lot. Be friendly with her, but also let her know the problem with your mother and ask her what she suggests. This will not only make her aware of it (because sometimes the head nurse isn't told by other nurses or caregivers what truly is going on), but will also show her you value her opinion. Also, without saying it, that you are watching over what is going on with your mother. I know every person is different, but maybe something here will help you. If not the suggestions, maybe just the fact of knowing your not alone.
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Reply to HeadNourishment

I'm sorry you aren't getting any replies - it can be very hard to manage people who refuse care and there are no easy answers.
One bit of advice I do have is to make sure that everything promised - like the more absorbent briefs - is noted on her chart.
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Reply to cwillie

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