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I live out of state and visit her nursing home unannounced. This has happened before. They said they didn't wash her hair because she refused or that they don't want to dry out her scalp. My mom has diabetes and dementia, so I could believe she can be difficult. But this last visit, I found too many clues.
At spring visit I bought her super sized bottle of gentle shampoo and leave-in container. Also hypo-allergenic unscented moisturizer. This visit along with unwashed hair, she had ear wax accumulation on the outer ear. They did not have any Q-tips in supply, none in the house!
I spoke to the head nurse and they don't keep a log of bathing time. Shouldn't they record how often they bathe, wash their hair, report if there may be any new sores found on body, possible self hygiene fails...
I don't know the magnitude of the problem, I'm not there all the time. I ran out and purchased Qtips, cotton swabs and tea tree oil. She cleaned the insides of her own ears while supervised. I cleaned the outer with the oil. I also gently wiped away what I thought were age spots on her scalp. She also had scaly itchy spots on arms. Very dry skin on legs. I can tell that they don't apply the fungal oil on her toe nails like I asked them too.
What can I expect from the nursing home? What can I expect from the visiting nurses and physicians? I'm planning a meeting with each and want to be informed of my rights so that I don't come off as outraged as I feel. What else should I ask for, to create a checks and balances?
I also want to ask them to send me copies of laboratory results and visit summaries. Btw, I do have POA.

Thank in advance.

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We had to hire an outside agency to get Mom bathed and changed twice a week at the assisted living. This is because we could control the companions and be sure that got done, for which we had to try a few different ones who could push her enough to get it done. AL staff does not push and will not push. It was "Mary do you want a bath now" and if she said no not only was it all over, there was no record of it. I just said "you can't take her out unless she is cleaned up".
I have been surprised at how much a care plan has to be specified for particulars such as "place lotion on arms twice weekly at 9am". And sometimes you have to pay for "add-ons' where you would think they would always be including (such as daily light tidy of room with toilet flush and light trash removal). Its been quite a learning curve.
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As her dementia progresses, I suspect that the factors you feel make it best for her to stay where she is, may not be a relevant. The patient's alertness, recognition of where they are, ability to speak and communicate are diminished. They become incontinent, unable to feed themselves, unable to walk, etc. They become completely dependent on their caregivers for all their needs. Would the place she is in be able to handle her then? I would read a lot about the progression of dementia, so you can make plans for her care down the road.

Igloo, makes a good point. Once she is not mobile, a move will be much more difficult.
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The rehab I was in showered me once a week. Yes, they logged it. Ear cleaning is done by an MD order. See the MD or the Head Nurse, they will get it done.
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Thanks for understanding.
I do feel it to be a risk to her mental well being if I move her. She is agreeable but would hate her surroundings... even if I could visit her daily. I can't even recreate those conditions I'm my own home.
I had established a primary Doctor for her in my hometown for when she has visited, but its the worsening dementia that has prevented her visits in the last year. Which means more trips for me to visit her. And my increased concern for the self care she was doing on her own but no longer does. All which is becoming more problematic for the personnel at the home.
Who can I hire for the 'above and beyond' care she needs? That is the issue I need to resolve. Thanks for helping me clarify. I can concentrate my efforts on finding help with that criteria in mind.
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It sounds like you are in an extremely difficult position. It seems you are torn between a NH where she may feel safe but at such a distance that you can not tend to things that are above and beyond the care a NH provides. I was told it was risky moving an advanced Dementia patient from their familiar surrondings. But...if you move her and yourself and other family members would be available on a daily basis to provide the extra care you mention above you may have to weigh that against moving her and her being closer to family. Her primary care Doctor can help you weigh your options. I do sympathize with your situation.
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Igloo, that is the care I am having a hard time finding and the reason is outrageous. Maybe to outrageous for some to understand.

There is an aspect to my situation that is difficult for me explain. My mother really has a good home, in that it matches her cultural upbringing. Her language, her foods. Bringing her into my world would be like making her a minority and therefore more likely to be misunderstood by professional caregivers. There is a language barrier so my options are limited.

Do any of you understand cultural limitations when looking for elder care. It's like putting a Jewish elder into a Jewish care facility. These homes exist but not just found anywhere.

My mom has declined into her original birth culture and does not speak English. She hears sirens and is tormented by radio announcements and authorities that no longer exist. She feels she is safely hidden away and the caregivers are her people. People she believes she can trust. At this time she shares a room with a blind roommate, so she can hide in darkness, curtains drawn, no TV.

As long as she is communicative and coherent (make believe world or not), moving her to the Midwest is not an option. Yet my sister and I are not ready to move to the east coast, we have jobs and families.
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So mom is not in a NH but rather an "adult foster care" or "board & care" facility? If that's the case, they are just not set up for doing the attention to medical details that it sounds like your mom is needing. The medication to her toenails issue, well, if she was in a NH, there would be doctors orders for the RX to be done twice a day and a required part of her mandated by medicare care plan. Right now, the staff is not required to do it or other detailed medical services. The board & cares expect the resident to still be self directed in their day to day needs & hygiene.

It may be that mom is at the point of needing a higher level of care. If the thought is that eventually you plan on moving her closer to you in another state, start looking now to do that. If she is gong to need to apply for Medicaid to pay for the NH, start to do things that make this easier. Like having her finances move to a banking group that is in both states and have her SS & retirement direct deposited to the new in both states bank account. I'd try to get her legal update by a firm who holds licenses in both states too.

If mom is still ambulatory, it is going to be easier to get her into an actual NH as in theory you can bring her for a visit to the new NH to see if they can provide the level of care needed. Also she could see a MD in your state to evaluate her & write the orders needed to get her admitted into a NH. Sometimes you just have to do what is best for them in the long term over their objections. If you don't have the personality to do this and your sister is more forceful, then let sissy take the lead on all this. As mom ages, her needs are only going to increase and be more overlooked at the place she is pcurrently in as its flat not a skilled nursing facility.

If she should become bedfast, it is going to be very difficult & expensive to move her to another state.
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I work at a nursing home, and yes their suppost to bath patients at less 3 times a week. But I know that many patient's don't like to take baths. I hear them telling the aide, no I don't want a bath. An aides can not force a patient to take a bath. Talking to the Director of Nursing or the Charge Nurses is your best bet to get your point across. They will see to it that your mom is being taking care of properly.
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I work at a nursing home, and yes their suppost to bath patients at less 3 times a week. But I know that many patient's don't like to take baths. I hear them telling the aide, no I don't want a bath. An aides can not force a patient to take a bath. Talking to the Director of Nursing or the Charge Nurses is your best bet to get your point across. They will see to it that your mom is being taking care of properly.
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I got Hospice on board for pallative care. Their aides did baths evey other day and RNs visited once a week and called me after every visit as well as made recommendations
to NH staff and brought in a better bed and Gerichair. It was comforting to have more eyes and ears on hand even though I was in and out every other day or so and sounds like your Mom is still on the ball enough that the word Hospice might upset her. But Hospice isnt necessarily only for the dying. She might not qualify. Your situation sounds especially tough due to distance.
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Yes, Adult Foster Care does describe the home she is in. I didn't now they had a category of their own and different regulations. They have private homes all around the state and 1 person manages so many homes in the neighborhood. I've met and talked to 3 of these 'district' managers when shopping around.
From questioning my mother daily, I know she gets at least 2 or more baths a week so they must be following NH protocol. I also get the feeling that if I tipped the ladies then she would get more attention, like nails and make-up.
What I've learned from your responses is that I really need to be closer to her, sooner rather then later.
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Not sure what states are involved for you but here in Oregon what you have described is referred to as Adult Foster Care. Just this past month my brother and I visited several foster homes and nursing homes as we needed to move mom from her assisted living. In addition we queried every elder care professional we could corner on the pros and cons of both. In relation to your situation we found this: Foster homes are not required to bath their residents to the same standards as nursing homes. Here a NH is required to bath their residents twice a week - FH are not. In general FHs are not held to the same laws, documentation, standards, training, protocols, and certifications that a NH is - not by a long shot. So guess where our mommy dearest moved today?
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Thanks for the advice. And the detailed instructions on safely cleaning her ears. I've decided to print it out and make a list of extra care actions she may need and add it to a binder that can be dated and signed by whomever I can get to help me keep staff on their toes.
Current familial circumstances keep me away from moving to her city. She is still coherent enough to make her wishes known and chooses her home town. I have long term plans to move there or if she worsens then I will move her to my northern state.
My sister and I take turns flying south every two months to check on her. I really do like the home she is in, ratio is 2 staff/6 patients with nurses visiting daily. And your right, nurses don't do much... in and out within 3-5 minutes. But the staff is caring and friendly. I do trust them for the most part, but also feel the lack of presence and visitors gets mother her way out of baths and even getting out of bed. Its a private home setting that she finds comforting. For now it was the best I could do to get her out of her own house where she was mostly alone with daily nurse and home care visits by CNA.
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A visit with the Director of Nursing at the Nursing home could probably answer most of your questions. It is unfortunate that you dont live closer. You really do have to be a presence to become familiar/friendly with staff and administration to know what is really going on and when. It is unfortunate and not right but when family/friends pop in often and not at regular times it seems staff are more on top of those patients.
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Juts seconding what GardenArtist had to say re: visiting nurses. Don't expect a lot. Heart, BP, temperature and a few perfunctory questions is about all you'll get. While the home health aides they sent us were great, the actual nurses didn't really do anything I couldn't have done myself, but we need them for prescriptions and such.
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muther, from what I have read on the forums here, there is only so much the staff can do for a resident in a nursing home if the residents refuses to cooperate. One's parent might be sweet and smiling when you are there, and after you leave become mad as a hornet and pout if the staff says time for your bath. The staff can't wait around for Mom to finally cooperate, the staff goes onto the next resident. This could go around and around for days on end.

The long term care where my Mom resides, everything is computerized. I see touch screen computer monitors on the walls where the staff places information on the patient.
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Q-tips should not be used for cleaning ears, especially by someone with dementia. It's too easy to accidentally probe too far and injure her ears. Even though people do use them, ENT doctors and technicians caution against it.

This is the VA's method ear cleaning at home:

First, wash hands before and after cleaning, then follow these instructions:

1. Mix equal amounts of hydrogen peroxide and tap water (well water must be boiled and cooled to room temp first) in a cup (VA provides one that's a 120 ml plastic cup with a cap). Liquids should be as close as possible to body temp. If too hot or too cold, person can feel dizzy or nauseous.

2. Use a syringe (you'll have to buy your own) with a flexible plastic tip; fill with the hydrogen peroxide/water mix, by placing tip of syringe in mixture, pull plunger to fill the syringe.

(Syringe is called BD 10 ml syringe, with a "Luer-Lok" tip, REF 309604)

Since the plastic cup to be filled with the mixture is 120 ml and the syringe only holds 10 ml, this is obviously for multiple uses. I think what I would do is just add 5 ml of hydrogen peroxide and 5 ml of water instead of filling the whole bottle.

3. Lie down on side, affected ear facing toward ceiling. Place towel under head. Gently place flexible tip of syringe into ear canal, but DO NOT PUSH TIP INTO THE EAR.

4. Slowly push plunger to push liquid SLOWLY into ear canal. Hold head still 5 minutes to allow solution to sit inside ear.

5. Then place a C shaped bowl or pan (like the emesis basins hospitals use) under ear and against neck, tilt head to allow liquid to drain into bowl and not on clothing as it may stain.

6. Repeat with other ear.

If ear pain and/or bloody drainage is experienced, discontinue and call doctor.

This is a similar but slightly different method of cleaning:
md-health/Ear-Wax-Removal-Hydrogen-Peroxide.html

There's also some helpful information on this site:
http://www.entnet.org/content/earwax-and-care


As to the issue of inadequate care, it doesn't sound as if the staff is on top of the situation. But I'm wondering what the patient-staff ratio is; that may be part of the problem.

How long has your mother been there? Have you always found deficiencies?

You asked what to expect from visiting nurses. As I understand, your mother is in a nursing home, so the nurses should be on staff. If your mother were in her own home, then visiting nurses would be appropriate. However, I wouldn't expect a lot from them; they generally take a more broad spectrum approach to the individual's overall health, while also focusing on specific areas of concern, especially if the home care is post hospital stay..

They will check her heart, pulse, etc., but they don't come often enough to provide more intense care. And generally they're tasked to factor in overall medical condition rather than become involved in providing care such as that which you mention. It's just the nature of having limited time and being reimbursed by Medicare.

You might want to ask for a meeting with the Director of Nursing to discuss the deficiencies you've found. I think it's also possible that they may have let care "slide" a bit because you're not there. If a family member is close and visits regularly, I think the nurses are a bit more attentive. They know they're being monitored!

But I also agree that it would be more helpful if your mother were so much closer to you.
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I'm going to label this response "it takes a village". Muther, do I recall that you are taking care of a spouse with dementia ? A lot on your plate. I'm wondering why your mom isn't in a facility closer to you. In my experience, once an elder is in a local facility, it really pays for them to be "around the corner" from someone who can stop by frequently .

With dementia patients and hygiene, I find it's a difficult road. I don't believe quips are thought to be "approved" for use, either for babies or elders these days. I would make an appointment to talk to the social worker about mom's bathing schedule and preferences.

A couple of months ago, my mother announced she could no longer bathe, as she would have to stand in the shower. Fortunately, we were able to untangle this dementia- related false thought and get her back into her regular bathing routine. However , had my sil not been a regular visitor and had we not pressed the staff to find out what was going on inside mom's head, I don't think we would have gotten beyond mom's "no".


In my opinion, talking to the nurses and line staff is fine for a to day stuff. If you want to understand what's really going on, make friends with the sw.
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