What do you all feel are fair expectations of how our loved ones are cared for in their various living arrangements?
Mom first lived (for almost 2 years) in the independent side of her facility, then last January we moved her to asst. living and then when she broke her hip in June we moved her to the Alzheimer's locked unit in late July directly from rehab for the hip surgery.
We were happy with the independent side...we were happy with the Assisted living arrangement...but the locked unit, um, not so much.
They are woefully understaffed.
There is one aid on duty from 11 pm to 6 am when another person joins her for an hour til 7 and then the day shift of 3 or 4 comes on. The 3 to 11 shift has two aides. There are 24 residents.
We have hired a night private aid (from 8 at night to 7 in the morning) to stay with her because one aid checking on all 24 of them didn't make us feel very secure ... we know she will try to get up and believe me, we do not want another broken hip!!
The private aid also does mom's laundry and showers her and gets her ready for bed.. This is stuff the regular aids would be doing.
The afternoon shift has had difficulties with mom's moods...should I remind them she has Alzheimers?? (sarcasm) They say she throws her shoes, along with profanity! Anyway, I finally told them maybe she wants her shoes off...maybe after having them on all day her feet hurt. She takes them off...they put them back on and the fun begins. I asked them why they give them back to her???...if she is throwing them, it makes sense to me to put them away. Her shoes look to have tape residue on them as though they taped her shoes on. I have the shoes and have told both the nurse and the woman who is the supervisor on that floor about it and told them to make sure nothing like that is happening!!
Mom's night aid has said mom is now sitting with her shoes off when the aid shows up at night.
Her night aid also shows up at supper time to make sure mom is eating...(on her own time) she, the private aid, feels they do not pay enough attention to the residents....especially the ones, like mom, who have difficulty feeding themselves.
That brings us to what happened yesterday. Mom fell. Mom's private aid got there last night and she was told mom fell...the private aid asked the nurse if an accident report was made and they denied she fell. (She fell)
Mom complained of her arm hurting through the night so the private aid called us and when we got there this morning we checked her out and, thankfully, she was fine.
The day nurse said the day aids say we should pull her private duty aid off the overnight shift and put her on the day shift when they say mom needs help most. ..oh, and by the way, the afternoon shift says the same thing.
I refused, overnight is when we are the most concerned with her getting up on her own. And, yep, she tries it. It would do no good to put the alarm on her...she would break the connection constantly...and with one aid at night on the whole floor with 24 residents she would be running herself around like a chicken with her head cut off...which is why we have the night private aid.
When I questioned the nurse this morning she made it sound like mom was in her room alone when she fell..that they found her sitting on the floor and when they asked her if she fell she said no and they BELIEVED HER!!!!!!!!!!!!!!! What the...
Let me tell you..she doesn't even know which room is hers! And she isn't supposed to be in the room alone in the first place so if she doesn't know how to get there did they take her because she was agitated and they wanted to get her out of the way? I don't know. And get this, the nurse said that she was agitated yesterday so the aids had to spend one on one time with her to calm her down. Really?? Is that above and beyond the call of duty to have to spend one on one time with a resident in the locked unit because they got agitated?? Come on.
I asked the nurse where the staff was when mom fell and she said maybe they were getting things ready for supper in the dining room, leaving the residents alone in the Tv room and the hallway. ..which means, no one had an eye on these people..the ones who sit and sleep and the ones who don't.
As we left with mom this morning (we take her to lunch with us on Sundays)
I told the nurse that I would talk to the director of the whole place since it sounds as though they aren't well staffed and must need help.
I got back from lunch and as soon as I got there the stories started to change....no one knew nothing about where she fell and everyone I talked to said they weren't there yesterday. So it is all a mystery...nobody knows nothing..but I did tell them again I was planning a meeting to discuss this all with the head honcho. Me, my husband and my son, her POA.
Mom has been walking for over a month now but she is still in the wheel chair when there. When I pick her up (4 times a week) we don't use the wheel chair. We use her walker. Though she is walking pretty good, she isn't steady enough to be doing it on her own so we stay right by her side. The problem is that she gets up and down from the wheel chair so they do have to keep an eye on her..so we thought it would be best to just leave the walker with her..that way if she gets up from a chair she will at least have the walker for stability and support..
We are going to make an appointment with the head guy for sometime this week..I want to know from him what we can reasonably expect as to her safety and what does he personally expect from his staff.
I expect someone's eyes to be on these people at all time.
I expect my mother's shoes not be taped to her feet.
I expect that I should be able to go home after seeing her there and not have to worry about what kind of care she is getting when I am gone.
I expect the staff to care for her and not request I pay for private aid round the clock care.
(her private aid is furious at all this..she says they are all just lazy and if they can get family members to provide private care it is one less person they have to deal with)
One other problem is that I can't bring up the private aid and what she knows because she is concerned they will ban her from the building.
We have thought about moving her to another facility but we just hate to have to do it. It would be one more move and no one would know her. We specifially chose this location so that as she advanced she would be with people who knew her before things got so bad.
So there you have it..if it ain't one darned thing, it's another....and another and another.
Dear Meg .. in your place I would start looking around for a better facility.
Your expectations are NOT too high, in fact I think your Mom should have supervision day AND night, not paid for by hiring an extra aide.
My Mom was in a unit where there were Alzheimer patients, other kinds of dementia, extreme old age with no dementia, and physically handicapped patients. On that floor were approximately 20 patients. All day and all night there was one registered nurse and a team of aides on a ratio of 5/1 .. each aide had charge of 5 patients, but in case of need, any aide was responsible for any patient.
Since my Mom was in a wheelchair, she could not go anywhere or fall .. but just in case she fell out of bed the nurse/aides checked on her during the night. Using physical restraints is illegal, but you can still tuck the blankets in tightly at the sides to keep a patient snugly in bed.
Try getting your Mom some slipper socks ..if it is their policy to have 'shoes' on the feet of every patient (I wonder why?)
Our criteria when choosing a NH were simple -
1. is the place clean and good smelling? If any patient was sitting in a soiled diaper and stinking, that place was off the list. At Mom's NH the aides appeared out of nowhere the minute someone need that kind of attention, whisked them off, and they came back smelling like a rose.
2. Are there enough personnel to keep the patient safe?
3. Is there a doctor on duty or on call at all times?
This place did all that and more and Mom was safe and happy there for the 2 years plus a few months remaining in her lifetime.
Bonuses were organized activities, entertainment, arts and crafts, reasonably good food, and a friendly helpful attitude.
You can discuss this list with the director of the NH where your Mom is, and insist that this minimum of necessary care be met, or go somewhere else. I never liked the idea that you had to pay for an axtra aide .. that is not the point of a NH! They are supposed to be responsible for all that patient's needs, day and nght.
I brought up the non slip socks issue but then even if she took them off, the whole place is carpeted. So there should be no slipping.
She is, for the most part, always clean and dry. The place is clean and does not smell.
The biggest problem is that they are so understaffed. This place is not a nursing home so there are not the strict guidelines as to aids to resident ratio.
They consider it assisted living..even though not a one could do much on their own.
I'm off to spend my regular Monday mornings with her. Hope I find her upright!
They are understaffed Meg. In Mom's unit there are 18 to 22 residents, depending on the week. They have 5 staff on first shift, 4 staff on second shift, and two on second shift. They feel they are understaffed!! They also have the responsibility for meals but there is one Med Tech that stays "on the floor" with no meal responsibilities. They have a daily log where all incidents are noted so it is easy to find out what happened last night.
I have learned to ask... "what time did it happen and who was caring for Mom at that time?" I go back to that particular person. There was some confusion about some of Dad's falls but I never saw anybody attempting to cover it up.
As for the shoes, Mom would be without shoes. Other than keeping on enough clothes to cover the body they let them do pretty much as they will clothes wise. Sometimes they are over dressed, under dressed, in their night gowns, or mismatched. But they are usually happy with what they have on. I would suspect there is something about the shoes that is annoying her. For a time Mom took off her shoes JUST to throw them at somebody because they were available. Since then the staff has learned what to do to lesson her annoyance and the shoes stay put.
No you are not expecting too much. You do need to talk to the administration about this problem. The food problem worries me the most. Sometimes Mom doesn't eat. She plays with her food or only likes part of what is there and can't separate it. If she doesn't eat she gets an alternative selection to try. If she still doesn't eat they do attempt to assist her. If that doesn't work she has ensure that she will drink. They make sure she gets something.
I would definitely keep the private where she is and keep an eye on the other staff while trying to get some answers from up the food chain. Remember that not all aids are created equally. Try to figure out which you can depend on for the truth and excellent care (they are usually the same person) and see if you can keep tabs on the other. If it doesn't improve there is always the option of a different home
You can call your local ombudsman and they will send you a book that tells you what by law you can expect from the nursing home. I called them and told them about a situation I had been dealing with for 6 weeks. The ombudsman person called the nursing home and everything was cleared up within a few days and then I received the wonderful book from the ombudsman people telling me what authority I have as a family member. Very good book. I hope you find some help with it. I am sending prayers your way.
I found out more info today. The aid who was with her during that one on one time I talked about was the aid who has been closest to her since the day we moved in. She is the aid I trust implicitly. She told me mom went ballistic...completely out of control. Wailing, flailing arms, throwing flowers. She also told me that it began in the morning which is unlike her pattern. She usually becomes agitated in the afternoon...but nothing like described. This aid knew nothing of the fall til I told her, so it happened before she got there.
We did have a scheduled doctor's appt. today so he checked her out. Her shoulder is a bit sore but overall no real damage done...this time.
After taking her out today, I brought her back and sat her at her lunch table with the same kind aid and quietly slipped out...that was about 12:15. At 1:00, I got the call...she wasn't doing well. She was pacing, crying, arguing with other residents....they were worried.
Her night aid just happened to stop by to visit her about then and when she saw what was happening she and the visiting nurse who happened to be there got her out of the locked unit and took her downstairs to the main lobby.
I walked in and my mom looked like she had been through hell. She was pale, sweating, shaking..the crying had stopped but I could still see it in her eyes.
We all sat together for about an hour and she was finally getting back to normal. The visiting nurse assured me they all love her and I said that is great but what the heck is going on...so, I took her back upstairs and used my handy dandy bowl urine catcher and got a sample and took it right up to the doctor. She probably still has that same UTI we have been fighting all summer long. The sample was a bright color of orange. I am hoping once again it is what it is. When we find out if it is a UTI we will treat it and then talk to the geriatric psychiatrist. This behavior has to be controlled.
I will tell you that she looked so bad when I got back up there I thought for a split second to just put her in the car and bring her home. Of course I know better but it did go through my mind.
I will get the results tomorrow hopefully on the UTI and go from there.
I will go up tomorrow afternoon to see what is happening.
Oh and let me tell you something one of the afternoon aids said to me...since I am up there mostly during the morning hours she didn't know me..she said mom calls for me a lot, so I should come up and see my mother more often.
Grrrrrrrrrr. When I explained to her that I see my mother plenty, she backed off...oh, and she said mom KNOWS exactly what she is doing when she has these outbursts. As though she is totally in control during these outburst. I was dumbfounded.
I did get to witness more of the aid/resident interaction. From approximately 3 to 4 this afternoon there wasn't a lot of attention being paid to the residents who were sitting "watching" Dr. Oz and then Oprah. I sat where I could see everything and everyone and I will tell you that one resident could have choked another and then had tea before they would have been noticed by staff.
That is the story of today.
Thank you for all the encouragement and suggestions.
I'm ready for this to get easier...silly, huh! Sheesh.
Your Mom is mimicking the pattern Mom had about 2 years ago. UTI UTI UTI!! She would be ok for a few days and then off the walls. UTI, treatment, then it would repeat itself. But the Microbid was the answer for us. They just have to treat it aggressively enough to get rid of it and then continue with the maintenance dosage. I am just glad you had the hand dandy toilet hat to collect a sample and that should be processed by tomorrow. Ask them to culture the sample as well. That will give them a better idea of what is present and in what quantity.
Please be sure that the UTI is handled before you proceed with psychiatric treatment. If the behavior is because of the UTI, you don't want to medicate when she doesn't need it without the UTI. So be sure you are at a normal base line first. I remember those days and my heart goes out to you and your Mom.
I noticed a little of the same thing you described between about 2:30 PM and 3:30 PM. That is their shift change. The med techs are busy counting the narcotics which has to be done at each shift change. The aids are making their entries in the logs and filling in the shift coming on as to what is going on. Most of the residents were in the TV room and the aids were either in the office or sitting in the dining room with their log books. Evidently that's not A-typical for shift change. That has been changed here with the new Life Enrichment person. When I was there yesterday he had many of the residents with him painting pumpkins. Mom was painting and having a good time. One of the new residents that has been a problem was super engaged. One tried to eat the paint brush and some were just watching but it beat TV.
Know I am thinking about you and hope you get your answers and a solution tomorrow. Hang on... it does get better
how this story reminds me of my mom in the lock down. i dont think you will even find a better place. the only lessons i learned..........complain to the director, you have to be moms advocate. you will also become the dr as you already have. i hate hearing this, but thats how it is. we need to try to change things. i am so willing to go to the government and ask for intervention. keep strong and just enjoy being with your mom. let me know if i can help.
I have changed when I go up there....I have moved it to afternoons instead of mornings..mornings are better for me but afternoons are better for her. She wins.
And I get the chance to show my face at a different time and observe quietly in a corner.
We have to wait one more day for the results to see if she does still have the UTI. Deb, I will wait for the final diagnosis before I begin searching for ways to calm the angst and fear she is experiencing. That is so hard. To know she is afraid..she asked me not to leave today because it scares her.
You're not gonna believe this one.
Sometime after I left her yesterday and when her night aid showed up (a span of two hours) something happened to her big toe. We think a wheel chair ran over it. It looked like a cartoon toe by the time I got there today. Big and red and, I swear, almost visibly pulsating! But she never complained of any pain. I would have!!!
Her night aid raised quite a fuss about it last night when she saw it!! They called the podiatrist to come and check it out..he finally came today but not til after I left... he had to remove the nail...had to give her a shot in her toe. . OUCH...but she was a good patient, they said. Maybe it was good I was not there...I might just have passed out!
SO, not only does she have to deal with all the stuff that comes with this disease but now her toe. And we had just gotten her out of the wheel chair. Now she can't wear any shoes. I will go out tomorrow and try to find some kind of safe toeless shoe.
With this disease... I believe anything! Oh my goodness Meg... I do hope you get a break in the chaos soon. I find it amazing how they don't seem to register some pain. Dad had his toe nail removed, put on his hard shoes, and walked home. I thought... "Ah the wonders for anesthesia!" But he continued to wear the shoes until I made him take them off. I bought him a pair of teva sandals, the kind with the angle strap and a strap across the top of the foot. They were as secure as his tennis shoes on his feet. He wore them with socks. He had another toe episode later. He was in a wheel chair by that time (never did figure out what happened to the toe) but over sized bedroom shoes with the toe cut out worked that time. I hope your Mom has a UTI!! At least then you know antibiotics will help.
Speaking of not knowing how things happen. Mom now has a chipped front tooth. Nobody knows when or how that happened. It doesn't seem to be bothering her but we are keeping an eye on it because I do know the absence of pain doesn't mean we are in the clear.
They are definately understaffed. I can understand you feeling more comfortable having a private aid for your mom during the overnight. It just doesn't seem right that you should have to pay that extra expense when afterall this facility is getting paid big bucks as it is. I think down inside I know I would of done the same thing for my mom too meg. We just want to make sure that our loved ones are getting the very best care they need and deserve. I spent so much time at my mom's facility I was there all different times morning night whenever. I spent a great deal of time sitting and observing what really goes on there. I will say my mom's place was very well staffed. I really had no complaints. Mom was clean and well taken care of. Even with mom being as sick as she was they were very good to her. I was visable all the time double checking everything. If I had one little concern I always went right to the charge nurse and asked or told her about my concern. Unfortunately in mom's case she had so many comorbidities it was a challenge.
I would go forth with your plan to speak to the director. I hope things get better for you and your mom. It is not easy making sure they get the best care they deserve. You are doing a great job meg hang in there.
Yesterday was uneventful for the most part. Thankfully.
I was with her all afternoon again. They said she only had one outburst in the morning. They had taken her down to join in on the sing a long..they said she had a great time and was singing outloud and knew most of the words...they said she became the entertainment. It made them all happy.
When it was over they took her back and positioned her in the TV room and she flipped....she just doesn't like that room...so when her outburst began, an aid came up behind her and started to move her chair. Mom started screaming for help. She had no idea who was doing what to her or why. The activities director said she corrected the aid and reminded her to always inform the person so that they are aware (somewhat) as to what is going on.
I got there after lunch and took over. I brought her a smoothie, sat her in her recliner in her room and she drank that thing in no time then fell alseep for an hour. She woke up and I took her down to more entertainment and after about an hour she said she was tired. I took her back up to her room and put her back into her chair. The visiting nurse showed up to change the bandage on her toe. So I got an upclose look at it. It looks much better than the first time I saw it. It looks clean and uninfected...but red where the nail had to be removed. They did give her a pain pill for it after that and she promptly went back to sleep in her chair for another hour. During that hour I had the aids and the head nurse and activities director come look at her. They had NEVER seen her completely at peace. The poor thing is probably just tired. They weren't letting her go to her room alone because of fall concerns. But now we will try somethig new on days I am not there. They will take her in ..place her in the chair, cover her with her favorite afghan, turn on the Tv and check as often as they can..which they said, realistically, would be every 15 to 30 minutes. When she has her outbursts it is usually when she is feeling overwhelmed by people or she is tired and she likes to be alone. Her recliner is soft and cushy and lower to the ground than a regular chair so it is harder to get up out of it. It will be our first attempt at leaving her alone for any lengths of time but we are going to try it to see if it helps with her moods. Of course, with me not there it may all go awry but we will try.
Still no answer on the UTI report...good grief! Of course, this is the week her doctor is on vacation so his P.A. is handling it and she doesn't know the history of a few weeks ago when we were in there talking about this problem.
The Doc said results would be back in one day..so far we are on our 3rd.
I decided to use a different tactic in dealing with the director..instead of charging his office with arms waving in mad rage, I will drop things on him like little bombs. Example: While at entertainment with her yesterday, I was very careful that no one got near mom's toe! He came by, I said "be careful of her toe". He asked "why? What happened". I replied..."uh, you don't know?!"
I saw the embarrassment come across his face. I told him what happened...that no one knew how or why and that I just "assumed" he would have read the accident report. I then told him that I had to go to 5 stores during the deluge of the tropical depression passing through to look for proper opened toe shoes for her to wear. ( I was quite dramatic)
I also figured out that I need to tell EVERYONE something...I told every single aid I saw about her toe and what happened and what the doctor had to do and that it is now extremely sensitive and to be careful of it, please. Many knew nothing about it. They don't seem to have a very good chain of information going on.
She seems to be slipping more and more..as is the norm with this disease...but I am afraid we are in a free fall...much like your mom, Deb, about a year ago. She is unaware of her surroundings most of the time..thinking we are all living in the same house which is why she is always calling out my name...she thinks I am just somewhere in the house.
Debbie G..I thought about something you wrote all day yesterday...wishing you were still going through it. I do worry about how things will be after she is gone...how I will deal with it. How all of us have to deal with it. How I want it to be over for her but after she is gone I will cry for her to still be here. All confusing and heartbreaking. I use to joke with her years ago that when she "went" I was going with her. Sadly, that won't be the case. I pray I will have the strength that she has shown me through the years. But I do worry that I won't. Self doubts. It's a killer.
Oh, and Deb, my mom chipped her tooth on a potato chip a few years ago. A potato chip! It was a veneer and it broke off.
Well...I must get up and clean some of the house before I go spend the afternoon with my mommy.
Hey Meg I realize I've been following your thread and not posting - silly me! You don't know I'm here offering support unless I put my fingers to the keyboard!
Well, I am here and wishing you all the best. Reading your posts takes me back to when we had my DSD in skilled nursing. Gosh - so many variables to be aware of. I think you're doing a FABULOUS job and just wanted to tell you!!!
I LOVE your new tactic and it is something I use often. I did that recently when the Administrator saw me sitting on the front porch rockers with Mom. He made some greeting that questioned why I was upstairs with Mom and I let him know that in the redecoration flurry they had take away our downstairs rocking chairs. I also mentioned the benefits of rocking on the central nervous system. Then I smiled when he promised to order new rocking chairs for the downstairs porch I have found that dropping logical bombs works a lot better than the arm waving rave.
The information chain is also a problem here. They do have daily logs but which aid has the time to read a daily log on 20 residents? Some information is transferred from one shift to the next but there is so much new on that shift that it misses the transfer to the next shift and then it is lost. If there is something really important I have been known to call first, second, and third shift for two or three days to be sure they know. I have also been known to write notes and tape them where the staff can see them... like on the door.
As for Mom enjoying her chair in her room in the quiet versus the fall risk. You may be where I was with Dad. He wanted to be in bed but when he tried to get up to go to the bathroom he would fall. He was not where they could see him constantly and there was a fall risk but he would get so upset being up and in the chaos of the living area that it was decided he needed to be where he was comfortable. That is when we started using the bed alarm. I cranked up the volume so that they could hear it from anywhere. They checked on him as often as then could... but they ran when that alarm went off. The other thing I did was call hospice. That way the hospice nurse or doctor would come check him if he did fall and we didn't have to venture to the ER.
Actually the low chair may work to your benefit. If it is more difficult for her to get out of she might just get out of it less often then she would a higher chair. We had elevated Dad's favorite leather chair so he could get out of it easier, until he started to fall. Then we took the lifts out from under it. He had a hard time getting up and would stop trying before he was successful.
Hope you have ask the doctor's office about the urinalysis. That is a long time to wait for results... unless they are doing a culture only and didn't do the dip stick testing. A dip stick test take just a few minutes. A culture can take 3 to 5 days. Whereas the culture is a more accurate test, at least with a positive dip stick result you can start treatment. I did have one test that was "misplaced" and had to be repeated. I would have never known it if I had not called and ask.
I do remember that free fall with my Dad Meg and I feel for you. I did have the same thoughts you had... "What will I do when I don't have Dad to take care of?" My answer was a little clearer than yours because I still have Mom to take care of but she is not nearly as time consuming as Dad was for the last two years of his life. I find that I fill my time with something else. Right now it is my niece and her two little darling girls. I miss my Dad every minute of every day but I also know that I would not want him back in the condition he was in. I am doing what I promised him I would do (taking care of Mom) and that occupies me. So in some ways having Mom has been a benefit. I often wonder what I will do when she is no longer here. Maybe sit in my PJs and read a book?
I am glad yesterday was better and hope today is even better. Know I keep you and your Mom in my thoughts and prayers every day