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Moved ALZ dad from a NU to a MC this past Wednesday. As reported, found out the NH had not being giving my dad his seizure med for a whole month due to a clerical error. Now in three days at Memory Care: Went 30 hours without fluids as they did not have the Thick It and everyone (MC, NH, hospice) was all pointing fingers at each other as to why the orders were not in place. It could be any, but I would think in the meanwhile, the MC would not let him go 30 hours without fluids. He is supposed to have nebulizer three times a day. First MC said they equipment had not come from hospice. Finally did last night. Today they said they had not received the nebulizer meds from pharmacy. I called pharmacy to ream them out only to be told they indeed delivered it three nights ago, at such and such a time, and signed for by a certain named nurse. So they confirmed they had it but could not find it. Finally they found it. They said his neb time was at eight to night. I said the heck with that, he is supposed to have it three times a day and he has not had it for three days, do it now. I called the hospice nurse who called the MC to raise hell (hospice is a godsend) and finally they did it. He was supposed to have a thickened ensure type drink with meals, and they always claimed it was coming from pharmacy that night. Yet the pharmancy told me today they made very clear to the MC that it would not be available until Monday. So I have been with my dad at meals all the time trying to assure he eats OK as in the past he would have a supplement drink to add if he didn't eat well. Its tough enough to watch my dad fade away the way it is . The reason you pay money to a facility is to have the peace of mind your LO is being taken care of, but I feel I am the only one making sure of this. Maybe this is just normal with all facilities, especially in the early days and you need to advocate. I was mad at the SNF we took him from, but looking back, they were probably not so bad. Am I just having bad luck or is this typical for places?

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Deep breath, Karsten.

We moved my mom, post stroke, to rehab ( a nice place where we were hoping to keep her, but she developed vascular dementia, from the stroke). From there , to a lovely AL, which also had a couple of levels of MC on site. We were hopeful.

Mom lasted about 2 hours in AL. While we were driving her there from rehab, she tried to grab gr8 staring wheel from DH. She was disoriented. She feĺ and didn't know how to push her alert button.

Moved her to the MC care section. Still very disoriented. Got her 24/7 aides.

She fell with two aides the room. Fractured her hip, which was not discovered for several days. Hospital for hip repair. NH for rehab and then long term care.

Why do you think MC is the right level of care?
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well, you are probably right. Probably should not have moved him from NH. The impetus was to be at a place within walking distance from my moms house and for him to have a private room. That said, my understanding, perhaps naïve, was that the MC could not accept him unless they reviewed the assessment material and could assure they could do the job.
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Ask/ request/demand a review of his needs.

Karsten, this is not your fault in any way. Don't beat yourself up!!!!
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We all have had nightmare experiences with our LO in facilities but it sure seems like you’ve had more than your fair share. And your poor dad! I think it’s time you went to the Administrator of the facility. Take along notes of what you’ve told us about all the missteps you’ve seen in Dad’s care. Be polite but firm and let them know this is NOT acceptable. Insist on a meeting within the next few days. Force them to make time for you. You can also meet with the Director of Nursing. It’s time to get the executive staff involved. Let them know you’re watching and making notes of all these incidents. Make yourself very visible at the facility. Get to know the nurses and aides. Let them know you’re not going away. Good luck and let us know his it works out.
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Karsten, it is a juggling act trying to find a place close enough to visit and that has excellent care. I experienced that with my parents. Seen both sides of the coin. Why is it THE best place is always a long drive? And the newly built place, only 3 minutes from home, not so great?

My Mom was in long-term-care when she went onto Hospice care. Seemed like everything went smoothly as Mom had some time on her side, plus she was already in a hospital bed and long-term-care had much of the equipment already on hand.

My Dad was in a wonderful Assisted Living/Memory Care when he was placed on Hospice Care. Dad had a very short time left, so it was a major scramble to get all the equipment over to the Assisted Living facility.... the hospital bed took a couple of days... so did the oxygen.

Thus, I believe skilled nursing facilities are more equipped to take care of a person on Hospice. I believed for my own Dad, he would have asked to be at his Memory Care room, as he really loved the facility.
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In my opinion, there's absolutely no excuse for not having Thik-It or providing similar support for someone who needs it. Nor is there an excuse for not having the nebulizer or 30 hours w/o hydration.

Even worse, the staff should have been working together instead of blaming each other.

I don't think this place has the capability to manage what I assume is a dysphagia diet. Nor does it seem able to work together to solve problems. Bad, bad signs.

I'd start looking immediately for someplace else, while also addressing the mismanagement situation with the administrative staff.

Is this a memory care unit, with outside hospice treating, i.e., who's responsible for the screw-ups?

I assume you're documenting everything?

This is NOT typical. Although I've had good facilities, not so good, and completely awful facilities, I was fortunate enough to have a few days to pick one which turned out to be better than I expected for the last 2 stays. In the future, I'll always use this one; it's a Catholic run facility, and better than any I've experienced.

If you're by any chance in SE Michigan, PM me and I'll give you the information on the great facility I've just used.

I'm sorry to read about the problems you're having; I can understand your frustration. I would be livid!
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Thanks all for your input. I am not blaming myself necessarily, but perhaps a memory care was not the right place for my father at this stage. Nonetheless he is there now and I would like to think it could work out rather than move again, though will have to if it does not improve. But there are positives including a very nice environment and close proximity to my mom who does not drive and could actually walk there from her home.

I drafted a letter outlining my specific concerns. I tried to make the letter diplomatic, saying there are also good things about the facility and for that reason we would like it to work out, but need to get our concerns addressed.

I thought of using this letter more of a guide for a sit down meeting with the director. My concern is that if the director starts making excuses and pointing fingers at hospice or the previous NH I could get upset and too emotional about it which would be counterproductive to getting my message across, whereas a letter they would be forced to read. (again, my view is it may very well be the fault of the other parties in some cases.  But the job of the MC/AL is to make sure they have the proper meds and equipment on hand, and you don't give a guy no hydration for over 24 yours)  I have to admit today when I arrived and found out the nebulizer meds still weren't there (even though I later found out they were there but no one knew they were there) I was in a very hot mood, and had the director been there I may have really let loose on her, which would not have been good.

On the other hand, I am wondering if a letter would seem a bit too formal, menacing, threatening etc, and could backfire as if the help finds out I made complaints they could react by giving my dad even worse care.

In the letter, in addition to the faults, I tried to point out situations and efforts of individual workers who worked hard trying to remedy the problems, though the problems should not have been there to begin with. To be honest, it seems like the workers themselves are trying to do a good job but have not been provided with proper training, instructions, or communications.

Oh, another thing. We had to send his food back twice today to be pureed properly. Even then my mom and me had to pick out chunks of corn, peas, carrots, Is it that hard to puree food correctly? Maybe it is. Or maybe they are not trained to. As Garden suggested, perhaps they are not in tune with a proper dysphagia regiment and this is not the place for my dad.

There is also this gentleman there in MC who kind of acts like a bully. He has gotten in my dads face a couple of times and yesterday I found him in my dads room watching my dad as he slept. I asked the aides for help in getting him out, and he would not budge, so to be honest I moved him out myself as the aides could not seem to do it. I suppose I have to be careful on that, but the aides weren't able to do the job.
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Karsten,
I feel badly for you, as I know how frustrating it is to expect things to go smoothly
Is this MC a single location, or part of a nationwide chain?
What level of nursing do they have on staff ?

There's no doubt the physical facilities are more pleasant than a nursing home, but hearing they don't have thick it and the puree isn't smooth is surprising

Mom has been in a dedicated memory care for over 2 years, feel free to private message me if you like
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A couple of things, Karsten;

Use Hospice. Call the Hospice Nurse and outline the issues--pureeing, lack of Thick-it, dehydration, nebulizer and ask THEM to figure out why those three things, any ONE of which might have killed your dad, weren't in place when dad arrived. Ask specifically if they think this MC is displaying an attitude of "he's on Hospice, it doesn't matter what we do or don't do". Ask Hospice Nurse specifically if s/he thinks you should move dad back to NH or elsewhere.

Find out who Director of Nursing is. Sit down with her/him first thing Monday and say you'd like this situation to work out, but these are the ways in which her facility has dropped the ball. What corrective actions will be taken to assure that there is accountability and re-framing of staff. Include the bully patient on this list. Think about if you feel safe leaving your mom, as a visitor, alone with this guy.

If DON is not shocked/horrified by these lapses and makes excuses, make arrangements to move Dad immediately. This was a mistake we made at mom's very first AL. If the DON is busy pointing fingers, or worse, blaming you, you want to move on.

Call the State Ombudsmen on Monday and report these lapses.
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Thanks again. This places so called Director of Nursing is an LPN who is a bit crabby. She is assisted by a couple of RNs who are each there half the time and are much nicer and more helpful. I think I need to talk to the director of the facility itself. As written above, I had thought about writing a letter outlining my concerns. I had thought I would do this as I could get my points across without getting worked up. A friend suggested a letter may seem too official and start the relationship on an adversarial note. He suggested I do write down the concerns in a bullet point fashion, then make two copies and bring it in to a meeting with the director to talk over, so I have an agenda of the meeting per se. Also, if the director sees I do have written records, she may know it is one step away from actually sending a letter to them. It is not a national chain but a regional chain so she has higher ups.
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The DON is an LPN? Oy.
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1. Resolution of issues.

You might take the approach that if the letter isn't seen as a starting point for negotiations and improvement, you will continue in the meeting, taking copious notes, and then look elsewhere, w/o telling them.

If you've already prepared yourself for their failure to respond professionally, then it'll be an affirmation of your suspicions, and won't come as a surprise which might provoke your wrath.

2. Options of presentation.

I think what I might do, learning from contract negotiations, is prepare a list of issues and offer potential solutions. Not only does that infer that you plan to stay there, but it (a) puts the burden on them to select a solution which meets your needs, (b) gives them wiggle room, but not a lot, and (c) establishes parameters, including such as ensuring that adequate supplies of nebulizer meds are available regularly, etc. and (d) moves past the issue of blame. I.e., it happened, it shouldn't have, now let's move forward with concrete plans.

That approach has been effective for me, more so than asking what they plan to do about the problems and putting them in the position of having to figure out something they might not have dealt with (such as the dysphagia issues).

3. Moving forward.

It also helps me keep the situation in a "lessons learned" mode for all of you, and avoids blame on anyone's part (including yours), i.e., we're in this together; let's address these issues and find solutions, NOW.

Please remember that this was out of your control and wasn't your fault.

4. Resolution, now and in the future.

I fully understand the issue of transferring to another facility; I really do hope you can make this work out for you.

5. There was another male poster a few years ago who was having similar responses and similar problems with a facility.

BarbBrooklyn, do you remember the man who went through a similar, long term situation? DManbro, something like that? I recall both of us were posting on his thread(s). If that was his name, Karsten, here's a link to his posts.

https://www.agingcare.com/search.aspx?searchterm=dmanbro

You might find it comforting to know that you're not alone.

6. Dysphagia diet issues.

a. On the pureeing issue: having to address this for my father, I found that facilities which have a dietician who's familiar with dysphagia (use that term - it may demonstrate that you're up to speed on pureed diets and let them know they're not dealing with a novice) have speech therapists who determine whether the food needs to be pureed to "mechanical soft" or more thoroughly blended pureed level.

I would do some research on dysphagia diets, so you can speak to the levels (1, 2, 3) and nectar or honey thickened liquids. It'll demonstrate clearly that you're familiar with the issue.

b. Fibrous foods, fresh fruit, and other difficult foods to puree.

The problem with pureeing some foods like peas, corn and green beans, peaches, pears, apples and others is that the outer coating is more fibrous than, say, bananas. I pureed those foods in larger quantities as pureeing a small quantity for one meal was difficult; there just wasn't enough bulk to puree properly.

Something that's not on the diet are foods with seeds - strawberries (which would have to be sieved), blackberries, etc.

Cooked pumpkin was a food that my father loved; if I didn't have time to cook canned pumpkin (which I rarely did), I just bought a pie, skimmed out the pumpkin and gave it a quick puree. I discarded the crust, although some dieticians will puree the crust.

I also fed him lemon pudding; he could eat it w/o further pureeing, and lemon was better than chocolate or vanilla.

c. Liquids. The two recent facilities that had dysphagia management capability also ordered the thickened liquids in bulk - water with lemon (which a speech pathologist told me stimulates the swallowing muscles) (Dad was on honey thick liquids), thickened cranberry and orange juice, and the Magic Cups, which are sort of like the Dixie Cups of my youth but don't melt.

d. I have a feeling this facility just doesn't have that much experience with dysphagia diets. I would consider that a serious deficit, not just now, but in the future as dysphagia is hard to reverse.

e. Ask if they have speech pathologists or therapists who provide training, just as occupational and physical therapists do.

There are different levels of exercise, some of which are known as Shaker exercises. They range from difficult ones such as a "head sit-up (laying down flat, the neck and head are elevated and held for x seconds) to easy ones such as guttural sounds in which consonants are said together....kind of like Russian or Turkish consonants together.

f. Is your father choking and gagging on foods? Eventually, a scopolamine patch might be suggested. (I posted on this earlier). It was recommended for my father but I was opposed b/c of the side effects (and the sourcing from a toxic plant) but eventually agreed to try it b/c it allegedly cut through the mucosal thickness.

I think it did work, but Dad was also eating and drinking less and less by the time it was started, so it's difficult to assess.

g. Creativity. Some of the therapists aren't creative and just puree standard foods. The one at the last SNF was creative; she even pureed cannolis!
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Barb, my reaction that the DON is an LPN was also Oy! as well, but I would add an OMG! And she supervises RNs? Double OMG!
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read through some of Dmanbro posts. Very educational. And to think a few days ago I was concerned about some cute physical therapist :) Doesn't seem important right now.,
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her title is not director of nursing per se. She is the one who is there during the day five days a week. They also have an outside nursing service they call on. And the outside nursing service was the ones who made the assessment they could accept my dad. But when the hospice nurse called this LPN the other day to give the orders for the Thik It, the LPN had left for the day at 2:00. OK, people have things they need to do but they should have had someone available to take calls coming in. Instead they blamed hospice for not calling in orders, when in fact hospice was trying to call in orders. I called the on call hospice center today and they said my dads care manager RN was planning a visit to my dad tomorrow anyway so I am going to make arrangements to be there at that time. Also going tonight even though we are snowed in here and had meant to take the day off. I am just not feeling comfortable about my dads care. Especially on weekends where it appears there are few people there who know anything.
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I remember DManBro well! Turned out his mom had a broken back. He got VERY tough with the facility, I recall. Instructive posts for you, Karsten.
How is dad doing, otherwise?
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he seems to be doing OK otherwise. Always seems in an easy mood despite his situation. Unlike my neurotic mom who has not physical issues we know of but is harder to deal with than dad. But as someone said earlier, some of these situations he went through earlier could have had a very detrimental effect.
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My personal experience with Dad and DH is just like your's. I think that the first week in any facility is DANGEROUS and needs special attention by family and/or other caregiver. I've been through this 4-5 times at different places and S**T always happens
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"There is also this gentleman there in MC who kind of acts like a bully. He has gotten in my dads face a couple of times and yesterday I found him in my dads room watching my dad as he slept. I asked the aides for help in getting him out, and he would not budge, so to be honest I moved him out myself as the aides could not seem to do it. I suppose I have to be careful on that, but the aides weren't able to do the job."

This needs immediate action by MC staff.
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Thanks jjariz. I was wondering if that could be the case. Not that that is good, but was wondering if these kind of snafus are common in early days at a new facility and are not necessarily indicative of the place in general. That said, will sit down with the Facility Director tomorrow, perhaps with the Hospice Nurse in tow, and go over these concerns in an informative, courteous manner and as Garden suggested above pose it as how we can work together to resolve this. Just bugs me when my parents are spending a lot their money for this care, yet I have to be on top of things all the time. Stupid Question: I see the acronym DH all the time. What is that?
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and it goes on. I went there today even though we are snowed in here in Minnesota, I felt the need to check up on him. Sure enough, he was laying in bed without his oxygen. It wasn't just that his cannula slipped out, it was not even connected. I told the aids and they said they had to take it off to bathe him earlier. Fine, I said, then put it back in. They said it was not that long. I said only because I came here to find it out. Who knows how long might he have gone without it .

Later I found the bully guy in his room (when my dad was not there).

The social worker and nurse from the hospice service seem to think I have some legitimate grievances and they both plan on meeting me there tomorrow morning to confront the management. I feel very good about this as this will give me added support, but also there presence will help prevent me from blowing a gasket with the management, which is what I feel like doing now. I was reluctatnt to put my dad on hospice as it seems so final, but it has been nothing but a godsend in helping to provide support during this time of dealing with care facilities.
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DH= dear husband.
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Oh yes, your grievances are legit. Exec Directors can be good about "talking around" the issue. Insist on a solution and a timeframe.
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Karsten, there is absolutely no excuse for removal of the cannula for a longer period than just a few seconds, and even that's not necessary as a washcloth can easily be used while the cannula is being held above it. I've done this one handed.

The fact that the aids challenged you by saying that he wasn't w/o oxygen that long reflects a noncompliance and much too casual attitude toward the use of oxygen. And, the cannula should never be removed from the concentrator unless it's not functioning or needs to be changed out.

It seems to me the concentrator hadn't even been turned on. I think I would have been livid.

To me this smacks of either incompetence or negligence. But it's inexcusable and intolerable.

I'm guessing that probably no one used a pulse ox to check his saturation level while they were "bathing" him?

The "stalker" might have mental problems, or dementia since this is a memory care. He may not realize what he's doing , but that's not an excuse. Staff needs to bring him closer to the nurse's station so they can keep an eye on him.

BTW, did you complete an inventory of your father's clothing and possessions when he entered this facility? I would check them regularly given the fact that the stalker enters the room while your father's sleeping.

I'll be thinking of you tomorrow and wishing you the best.
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Further thoughts...do you have a phone that's capable of taking good, clear photos? I think I would start taking them, just in case you have to support the statements you'll be making on the lack of minimally acceptable care.

I think I'd even be considering finding a quality video system and hiding it somewhere in the room. I have a feeling more is going on than what you see when you're there.

You might ask the hospice worker what other facilities they cover, and if they would recommend any of them.
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Karsten, good luck today and please let us know how the Exec Director proposes to retrain his/her staff.

I learned through experience that apologies were not the ticket; you ask "what is your corrective action plan and when may I receive written assurance that the staff has been trained re: bathing/cannula, proper dysphagia level"(and whatever else has been found wanting).

I would still be calling the Ombudsman today. Dad's been there since Wednesday, right? It's not like he was admitted on the weekend.

I think the Hospice folks are your best allies here, both in getting compliance from the Exec. Dir AND in telling you if it's time to move dad.
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Wow!! Are all these places incompetent?? My parents AL in Illinois is!

Too many "stories" to share but I finally contacted the Ombudsman and she's taking it further! We've been told she's working on many cases at this AL but most people and their families arent willing to file a complaint because their scared of repercussions. A few days ago an RN from the state came to interview both of my parents but said that had nothing to do with the ombudsman case. That confused me but whatever.  I asked her about Teepa Snow and wish that the staff could watch her videos...she had no idea what I was talking about!!  Am I being too touchy here, wondering why she has never heard of Teepa Snow?? 
DON and Administrator of this AL that are newly hired is a joke. In the two years my parents have been in this assisted-living, they have had four different DONs and three different administrators! This assisted-living is owned by an individual but managed by a big company who manages 30+ other ones.
I believe it STARTS with the management (not the DONs or  administrator).. I can't believe some of the brainless, uncaring, "professionals" they have hired.  There are some good CNA's!  No one there at this assisted-living can help us with the financial side of it either!

Talking with the ombudsman ( meaning numerous repeated phone calls and updates) has made us all feel better and hope to see a light at the end of this long tunnel.

Keep pushin on Karsten!
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It really sounds to me as though this facility is not equipped to handle anyone with real physical needs, I would worry that as his health declines the care will be even less suitable. The outside placement agency no doubt receives a commission for each placement and unfortunately this can lead to pushing a "sale" and leaving the facilities they represent to deal with the mess.
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I think the poster has some valid grievances that should be addressed. Some observations from my experience.....

I’ve spent time in care facilities as a tradesman, as a volunteer and got my parents in assisted living back in December. Mom just died leaving dad in the facility.

Not excusing bad care but when you think about the challenges of caring for one elderly, very ill, and demented person, multiply than by 50 or 100. It just an incredible amount to keep up with. All the different care needs, the meds, house keeping and food services.

Most places tend to be able to keep higher level employees.  Below the LPN level is where it’s tough to find and keep folks.  CENAs, housekeeping, food service, is a constant churn of employees. It’s hard work, for the worst pay. In the area Where my folks are you can make as much or more at Wendy’s . Wiping butts or making burgers......I’d be at Wendy’s....

My dads place is pretty nice, private pay only and these folks have just plain saved my ass many times over. However, just this am I sent a brief email with a list of things that need attention. Dave needs a shave, a haircut and his bathroom is filthy. I’ll see the ad min gals later today. I’m not mad but I’ll make sure they take note.

The first time I worked in a nursing home as a tradesman was several years ago. You couldn’t help noticing how difficult and unpleasant the low level care jobs were. But I’ve always been amazed at the kindness and compassion for the residents shown by these 99% of these workers. Some places are so understaffed I don’t how a CENA survives a week.

The ads min jobs are no picnic either. The director at my dads place can keep 4 balls in the air with one hand, direct the Russian army with the other and listen to me complain all at the same time.
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Posted too early....Just wanted to add .......

One of the first things I checked into about my dads AL was how long the various ad min folks, Director of this and that, had been there. In this particular place most had several years. And they were honest about turnover in the lower ranks.

Not a good sign if you have a different director or head of nursing every few weeks. That usually means the corporate office is treating all employees like crap.
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