More on the dangers of not visiting regularly

M1

So, next week is seven months that my partner has been in MC (eight since she left home to be hospitalized).  Today, I discover that they have been expecting ME to supply personal care items like TP, soap, shampoo, etc.  I am livid that this was not caught sooner;  I had asked once before, when I noticed that there wasn't toilet paper in her bathroom.

I am more than livid, I am just sick.  How could this happen?  

Gig Harbor

What have they been using? That seems crazy. Have they not brushed her teeth since she moved in? There is no way they will be able to explain why they haven’t contacted you.

Jo C.

Stunned.  I can only imagine how you felt when finding this out.   Toilet paper?  It is such a bizarre requirement; considering the monthly fees, it is really over the top.  It is not an Independent Living Apartment; it is MC housing and caring for dependent residents.

Frankly; I wonder what the government oversight entity would think of such a requirement re the toilet paper; that should absolutely be a basic provision for the basic physical hygiene care of the dependent patient resident.  Ombudman officer may know. 

Prior to admission did they provide you with a list of mandatory items being required for their residents?  It would also have been their responsibility to do some kindly followup to ensure that the family of their resident understood if all was not in line with their requirements.

In all of my experience with many facilities, such items are usually provided by the care facility; I never seen a toilet paper requirement in any such settings.   Many residents have their own shampoo and soap they prefer and if so, they bring it in.  If they do not, most facilities usually have basic soaps and shampoo they use for hand washing and bathing.  We brought in our own shampoo as it was much gentler than the one provided by the facilities. This was both at MC and SNF sites.  Had six different facilities for four LOs.  Additional facilities for patients discharging from the acute med center to care at different facilities in MC and SNF settings and no such requirements.

I have read that sometimes, upon occasion, a facility may bill for soaps or shampoos if not provided by family, but I have not yet experienced that in actuality. Never, ever though, have I ever seen a requirement that the resident must provide their own toilet paper.

Haven't heard of your feelings lately; have you felt positive and satiisfied  with the care and management of your Partner's care needs on all shifts, especially in regard to behavioral issues as well as physical care?

Not your fault you were not aware of this; who would even think of such a demand for toilet paper?   I am so sorry M; one more tribulation in so many at a very difficult time of ongoing challenges.  Please take good care of you; much stress and you are a loving, caring and very patient person striving to do the best that can possibly be done.

J.

M1

I signed paperwork when she was admitted for them to supply and bill for personal care items, including incontinence products if needed (which they were not).  And they dropped the ball.  

I spent a long time on the phone with the director this afternoon.  She swears they have been supplying her--I don't know how, maybe taking from others?--and that she hasn't gone without, but admits that they dropped the ball and that she has been "frustrated" with their vendor.  I have emails I sent at the end of August when after one visit, there wasn't toilet paper in her bathroom--and got no response.  I have asked repeatedly if there was anything she needed and was told no.  And of course, my partner doesn't know any different.  And she's generally low maintnenance on these things--but there is certainly body lotion she likes, dental floss she likes, etc.  I do wonder what the hell they've been doing for SEVEN MONTHS.

But it bespeaks a huge process problem.  Needless to say, I am going to WalMart tonight and stocking up, and taking a carload in the morning.

I will have to figure out from there what other recourse I take.  I have repeatedly expressed concerns about needs not being met if I wasn't there to oversee, and this is just it in spades.  It makes me very unhappy that their default is "no news is good news" and I don't hear any feedback, positive or negative, unless there's a problem (which there really haven't been, except for her not tolerating my visits).

I don't know.  $10K+ a month and this is what I get?  And yet...I don't know how I could possibly muster the energy to move her now.  She has bonded with some of the staff.   But I will demand a reckoning of some sort.

Ed1937

I'm sorry you had yet something else negative to deal with. They certainly should have gone over all the requirements when you signed her in. When I signed my wife in, they went over everything with me before I signed. I was responsible for personal items like shampoo, soap, paper towels, but I don't remember anything being said about TP. It seems they would all furnish that, if for no other reason but to keep the staff from spending a lot of time cleaning the place.

Other than that, was there anything good that came out of your visit?

dayn2nite2

I don't understand how TOILET PAPER, of all things, is considered a "you provide" item.

My mother was in a NH on Medicaid, so my situation at that time was different, but Medicaid offered generic shampoo, soap, toothpaste, brush.  TOILET PAPER was considered a FACILITY item.  I wanted my mom to have better than "generic" so I provided shower gel, shampoo, toothpaste and a nicer toothbrush than what was provided.  Before Medicaid I provided briefs, after she had been approved Medicaid did provide briefs, but did not provide wipes, so I provided those.  In other words, I provided the more "luxury" type items but under no circumstances was toilet paper considered a personal item.

It is beyond cheap and chintzy for a facility to make the patient provide their own toilet paper.

If they have been supplying her, they probably purchase "packs" of toiletry items to her, but again, I have never seen a toiletries pack that included toilet paper.

If it were much much earlier in this facility, I would have recommended you move her somewhere else - but now?  With as hard a time she's had adjusting...I just couldn't suggest moving her.

Go over your paperwork and see where it says toilet paper is something you need to provide, I just cannot believe it's true!

Lorita

When Jack,my cousin's husband,was in assisted living he had to provide TP and other things.  When my.parents were in a NH for a short time, the NH provided everything.  What would happen if the resident didn't have family to provide these things?  Seems to me TP should be included as a necessity.  Cost of care is certainly expensive enough.

Beachfan

M1,

That is just bizarro and makes no sense.  Especially considering the amount you pay each month for her care; to be expected to pay extra for toilet tissue is absurd!!! I provide briefs and wipes for DH; I get them auto shipped to my home and deliver them to the MCF.  Every week when I visit, I take inventory of his supplies in an attempt to manage orders and delivery.  There is no rhyme nor reason to how the staff uses his items.  Today he had 12 packages of wipes(48/pkg.) and 9 packages of briefs (12/pkg.).  I don’t recall restocking his supply for at least 2 weeks, but as long as I’m not charged for this, I’m fine.  His cottage is small and I have a nice rapport with his caregivers and the facility director which makes it easy to keep on top of things.  You have enough on your plate without the worry over toilet paper; that is just ridiculous.  I hope you can get it sorted out soon!

JJAz

Keep track of the inventory that you provide.  Carefully.  In facilities where family is allowed to provide their own toiletries . . . they don't.  Out of necessities, caregivers will "occasionally" take other resident's supplies until you complain and show that you are keeping records.

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Joe C.

M1, This is completely unacceptable. At DW’s MC I have to provide personal items but not TD. One time I saw the TP roller empty but when I asked an aid she immediately open a cabinet and handed me 2 rolls. I know once a week one of the aides checks out what each resident is low on or out of and I will get an email if she needs anything, you don’t need a vendor for that. I do mark each bottle of shampoo/body wash ect. with a sharpie.

Crushed

DW is late stage 7 and needs total care

I supply Depends, pads, wipes, toothpaste, new electronic tooth  brush ends
I do pay for a personal caretaker who alerts me if anything is short.  
I get billed if they have to supply something. 
I pay for haircuts from the in house  haircut person.

I also supply yogurt, cake, muffins and ice cream
 

M1

Got back from taking things about an hour ago.  Talked briefly to the director again; a care plan meeting is pending.  I emphasized that "low maintenance" should not translate to "easily neglected."  I think that's what's been happening, and again--with my not being able to visit, I didn't pick it up (I didn't visit yesterday, Ed, it was an email that finally alerted me to the problem).

And yes, they do expect me to supply toilet paper, too.  They said when they supplied it, people complained about the brands.  Geez.

So I took enough to last a long time.  I gave a copy of the closet key to our friends who have been able to visit--for the time being, it may be easier for them to monitor than for me.

But I'm still floored that this could go on for seven months.  I had asked repeatedly if there was anything she needed.

After the catastrophically bad hospitalization and now this, I just feel snakebitten.  One begins to wonder, is it me?  What am I not doing?  Is it just bad luck?  Is the system really this broken?

It does also make me contemplate moving her.  but that would be complicated, too.  I guess right now I'll wait on the care plan meeting and see what responses are forthcoming.

jfkoc

It is NOT you!!!

toolbeltexpert

M1 I wonder how many are like me I went back to the agreement I signed and it did state that I was to supply toiletries.  They have been putting incontinence supplies in her wardrobe,they use them wherever they shower her. I have told them she is not incontinent. I mentioned that she has underwater in the wardrobe. So today I asked to be sure. Toilet paper is included as are some small supply. I have her shampoo and cream rinse in the wardrobe. I washed her hair today because she does do that when she showers. Doesn't  sound like I will be charged. I have had to get Toilet paper several times because it was empty. They are very quick to respond to my requests.

The head nurse made sure to tell me if I had any issues to see her first and she would do her best to remedy it. And she has been very faithful to that promise.

Sorry your having to deal with this.

Your are right about visiting does pick up on problems that might go unnoticed.

Stewart

ImMaggieMae

M1, it certainly is not you. One would think that $120k per year would get you a basic necessity like toilet paper. People would complain about the brand of toilet paper if they supplied it? Does anyone ever complain about the food? I think many of these places are just understaffed or the workers are not very well trained. There are too many members here with complaints about soiled linens, falls, LO’s not getting their meals if they fail to get up on time, poor hygiene and even having to be there to make sure they are getting the correct meds. It’s infuriating that you have to deal with things like this after all you’ve been through with her. You did your research and put her in the place that looked the best. They let you down.

GothicGremlin

Oh my gosh, M1, I'm speechless. It is NOT you, it's them.

My sister is pretty low maintenance too, so I understand all too well how problematic that can be. I worried about that very thing when I placed Peggy in memory care.

Peggy did not want to go to memory care - at all. She was worried that we'd all forget about her. That's what led to me putting together "team Peggy" (me, two of her friends, and a caregiver I've used for a long time).

Seeing several of us on different days helped Peggy realize that we're all still here. Seeing one of us so frequently has the side benefit of staff knowing that we have eyes on her. Peggy only very rarely gets ignored.

I know that you can't visit, but maybe there are friends and/or family around that your partner will accept? Are your partner's personal care items stored in her room? If so, can you go check out what she's got while she's eating or engaged in an activity?

About personal care items -- TP is the responsibility of our memory care facility. I'm responsible for everything else - depends, wipes, soap, shampoo/conditioner, etc. For an additional monthly fee they'll provide everything. But I did the math and I can cover everything much more inexpensively, so I haven't gone the fee route.

Ed1937

"I didn't visit yesterday, Ed, it was an email that finally alerted me to the problem)."

Sorry, M1. I was under the impression that you visited. Whenever you do try again, I hope you will not be the only one going, considering the way things have been going. You really do need to get a break sometime. You're still in my prayers.

Jo C.

Heavens no, it is absolutely not "you," M1.   It really is a good idea for you to label the items with the name and date the items were purchased.  If there are multiple packages of TP with multiple rolls per package, I sure would date all of those packages and make it Pkg 1 with date and Pkg 2 with date, etc,.

When my LOs were in care, two of the facilities even provided incontinence supplies in the monthly fee. However, these items were not high quality at all and did not do a good job. I decided to bring in our own better quality incontinence supplies but found them disappearing very, very quickly.  I am pretty sure that some aides were borrowing some to use with other patients.  At that point, I began to label packages with the date and also kept a log list of items and dates of things I supplied which the aides could easily see on the inside of the cupboard door.  After that, things did not disappear.

M; have you seen the report from the last full inspection the facility had?  It is law that the inspection reports must be made available to family or patient residents upon request.  I always checked this out at each facility I visited when assessing them and again after subsequent inspections while my LO was residing in the facility.   Every facility gets negatives, it is a matter of degree and how serious the findings are and how the facility plans to rectify the issues. It is expected that a family member when looking at the facility for placement will ask to see the report; it is not a negative.

If you haven't seen this, I would ask for it now before your upcoming meeting if you can. I would also look at Yelp to see what sorts of comments were being made. I am certainly not a big fan of Yelp for various reasons, but it is just another way to get a feeling for things.

You have been so diligent and seriously careful to ensure excellence in care as much as possible and have been let down in various ways for your LO.  Some of the feedback you got seemed seriously suboptimal and actually trying to perhaps mollify you with excuses that just do not hold water.  AND . . . the reason why they do not supply TP is really obtuse.  Multiple failures with the basics are really not confidence inducing.

Overall; I would even question at this upcoming care conference just how they consistently work with the behaviors AND if the plan for that and other issues are part of the patient plan of care and if all staff is working with such approaches or monitoring on all shifts and how do they ensure that and how do they monitor that and is it documented somewhere.  What IS their continuity of care game plan for the problem issues?  I also found it eye opening to read the patient record every four weeks or so; more often if something was sliding sideways for my LO. Again, it is acceptable to do that, but not each day or even each week unless a LO is in the midst of a touchy situation. I read all nursing notes and all aide notes, MD visit notes, labs, etc.  I also, when things were a bit dicey did also review the med notebook log kept on the med cart to see what was happening with the prns.  Big issues found which were part of the problem.

No; I did not have an adversarial relationship with the facility or staff. In fact, we had a very good relationship. I was very supportive of staff at all levels and brought in treats every couple of weeks or so and did not pick on small things nor did I make big issues out of small items. Positivity is best unless things are going over the moon and inappropriate.  It is good to have visitors so as to send the silent message that the resident has lots of eyes and ears; that seems to work well. 

My LO was initially in a very nice MC facilty.  It certainly was great surroundings and had much activity.  However, what was displayed and shared did not come to pass and I began to see significant issues re basics which I kindly and appropriately worked with.  Well; after a time, things were failing in such a manner that continuing really was not an option.  I had to make a decision to move my LO which was scary and deeply concerning wondering about the effect on my LO who had some issues and I felt change of environment would set my LO back.   It had .to be done.  We changed. The new facility was not as lovely as the the first; however the care was amazing and never, in the several years there did it flag.  To my utter surprise, my LO actually did very well and began to thrive.   Staff was awesome and staffing was actually pretty good.  Staff turnover was extemely low   My fears were for naught which was a blessing.

I so hope that you can get acceptable improvement. My guess is that this may be the type of  management in which only the squeaky wheels get the grease.  You may have to become stern and declare your expectations and not be so polite you give them a way out with their very anemic excuses for what they seem to feel are explanations.

Heartache for those of us trying valiantly to care for those we love so much and must depend upon others for even the basics.

What did happen by the way with the person you were hiring to be the "visitor" with your Partner?  Did she work out? 

Feeling sad for what you are having to endure,

J..

Paris20

M1, you have every right to be outraged. I pay a fortune for my husband’s care in a skilled nursing facility but they do everything and supply everything. At first I visited for hours each day. It took a great deal out of me emotionally to see who DH had become. Now I visit every other day for 90 minutes at most. I couldn’t do this in a place where care is inadequate. Are you stuck keeping your spouse in this place? If not, I’d start looking elsewhere. At the very least, you need to speak up.

M1

Paris, you can bet I am going to be very, very vocal.  They know I am pissed and are falling all over themselves to be apologetic.  Interestingly (as jfkoc and Jo asked), all of the inspection reports are good.  But I am already considering alternatives, but will think carefully before I make any further decisions.  There will be a number of meetings and reckonings in the next few days. Right now I know that they are embarrassed that this happened, but that's clearly not enough.  Again, in the admissions paperwork, there was an option to give permission for an outside vendor to supply personal care products, and that's what I signed.  Turns out, that meant only incontinence products:  but NOWHERE in the admission paperwork was that explained, and there was NO documentation anywhere in that paperwork that I was responsible for all other items.  They have acknowledged that this was a deficit and say they are going to fix it with addition of a list to their admission packet (too late for us, but maybe it will help some other family).  

And this is exactly the danger of a family member not being able to visit and oversee care regularly, which is the dilemma I am still in, after seven months.  I have yet to hear any explanation from them about why this was not caught sooner:  surely someone who was checking her bathroom or helping her with baths and hygiene would have realized that she was chronically out of TP, no Kleenex, no shampoo, no deodorant, no lotion, no toothpaste?  That's the part I can't figure out and that is inexcusable to me.  Specifically when I had mentioned more than once the absence of TP, and had asked repeatedly if there was anything she needed.   They have made the activities director, who is sweet but young, the point person for talking to families; I did not get regular communication from anyone whose responsibility was hands-on care.  And my partner is still pretty independent in her ADL's--but that seems to mean that these things were neglected.  Someone clearly should have been checking, and it's obvious that my partner did not know to ask.  But I had also asked the head nurse on occasion if there was anything she needed.  So their ability to address these questions will determine whether I proceed with trying to move her or not.  

MN Chickadee

We had to supply all personal care products at our first MC facility including Depends but not toilet paper! They did inventory of everyone's supplies once a month and called me with a list of what mom needed. The second facility provided everything and had a vendor that delivered everything. Same for medications, they kept track of levels and had a pharmacy deliver almost daily. I know everyone is short staffed right now but that is just nutty; how does it get that far without communication? I can see why you would be considering moving her. I would be torn as well.

MaryG123

I agree with Paris20 and would start looking elsewhere.  If I were you, I would never trust them to communicate appropriately, and what a burden that would be.  There has to be a better option.

Jo C.

M; I just realized you are approaching having paid nearly $100,000 for the "care" of your LO.   Performance and expectations for performance by all levels of staff comes from the top on down . . . from what you have shared over time, it appears that the "top on down" dynamics may well not be present.  I would by this point be questioning that there has not been adequate value placed on actual performance by appropriate staff and that the owner's value system may possibly be to themselves in what their profit will be.  Facility Administrator and DON may possibly be on the ongoing fire line to produce cost savings to enhance the bottom line and their salaries, as well as bonuses and actual job may depend upon it.  Of course I do not know this to be true; it is just that I have seen such dynamics which is why that occurred to me. (Worse if the facility is owned by a company that is on the stock market and must return value to their investors.)

The fact that an Activities Director will be the one to communicate all and sundry regarding your Partner is inappropriate.  An AD is not educated for such dynamics plus other issues.  By this point in time, I would not only be questioning the physical care issues, I would be questioning the actual psychological and emotional needs not being met and wonder if this has been contributing to the behaviors your Partner is showing when you come to visit.  She cannot process the actual failings happening around her; she is helpless to do so, but she certainly can feel them.   Though fairly able to be high functioning to a point, she may well be at another point where she can no longer clearly process such issues nor be able to gain assistance with various overlooked things and therefore feeling frustrated and perhaps at loose ends, and therefore acts out and it comes in spades when you visit as you would be her "rescuer" if she is very frustrated that may be why it all comes out on you.  Don't know this to be true; just a thought that ran through my mind.

It would be perhaps a good idea to read your Partner's patient record at the facility to assess what has been happening on each shift over time and what the staff is documenting or not documenting.  Pretty surprising and one can pick up a lot if there are failures and even problems that were never communicatea to family.

No matter the discussion in the meeting, if this were me, I would begin to look for other facilities; assessing them deeply until I had one or two choices of excellence and then hold those as an alternative if it is felt a change is necesssary.

Since this appears to be a top on down failure of adequate management from higher levels to basic levels and rather unprofessional on some levels, this may not be able to be rectified.  Sure; they know you are royally p.o'd, but that is the here in now for a couple of things; what of the more complex matters that are not seen including the lack of professionals to be the communicators, etc.

I think the handwriting is on the wall; it would be best to have a good viable alternative in mind just in case the slipshod patient management continues.   There is of course a concern about making a change; however, a move may or may not be a negative depending on the new facility staff's professional capabilities and worth place on  their patient residents needs physical, psychological and emotional.  It is possible if she feels safer and needs are better met that she will perhaps be able to settle and blessedly even thrive.  It of course is a risk, but the present facility cost of care and the pathetic results after an entire seven months of living at this facility are not appearing to deliver.  If they can remediate; that is good.  If not able to provide that consistently, then a choice may have to be considered. 

It is also a long drive from your property to other settings; I remember that from your initial searching for placement.  That is something to think about; however, you do not see your LO now as it is.  If you can only visit once a week or even once every other week or so at a different facility because of distance, if the confidence and results in care is far better, it may be a blessing and if much better, then your Partner may be able to begin to thrive as my LO did as stated in my above Post. That was a surprise to me as I thought my LO would have major meltdowns, but it was actually a big positive which I believe was because of the failings at the other facility to provide the emotional and care support  .   The new facility and staff from the get-go was able to induce a feeling of being safe and cared about.  The new facility by the way had a DON and Adminsistrtion with very high performance standards for all staff and had a happy staff that had a very low turnover rate; staff just did not leave.  

So many questions, no crystal ball to tell us what will be.  If you do decide to make a change and the facility is far distance from you, it would perhaps be a good idea to find a good person to hire who can be at the facility perhaps two or three times a week for a few hours each day to engage with your Partner, attend activities with her, and to do oversight and make reports to you.  Just throwing that out there just in case.

NOTE:  For newbies who are reading all of this, when looking for a facility, do ask to see the written results of the facilities last onsight inspection.  The Medicare.gov site to see facility ratings is a bit problematic in that the facilities themselves report their own numbers and information.  Some facilities are honest; others not so much and no one checks to see how accurate the facility reports are.

Once again, I send warmest thoughts your way in hopes that all will work out soon in whatever way it is best.   M1, you are a highly intelligent person with much insight as well as clinical insight and skills based on education and profession.  You are doing a very good job and will  know what the best route will be as you move forward.

Please keep letting us know how you are and how things are going, we truly do care very much and are so hoping for a good outcome for both your beloved Partner and yourself. Peace of mind is priceless.

J.