Is anyone else afraid to be the squeaky wheel?

You need to have a voice for her and make sure she is taken care of the right way. If I complain about something they know that I will go off and if something happens to my dad someone will pay for it. I'm a voice for him and I make sure of it.I go see my dad every other day to make sure he's ok

Yes…a difficult decision..as a retired clinical staff long term worker who attended meetings where family was discussed. I find myself also treading carefully. I doubt blowback but I do know family that can balance criticism with some thank you statements works best. At my moms place I find some small things to complain about but I always start truthfully saying that my mom loves it there and finds everyone friendly. Then …for example if her beds not being made, I say I am worried mom will hurt her back again trying to make the bed {true}.. I never say “mom said….”. I overlook small issues and concentrate on the big ones…Mom complains they forget her bran cereal…I buy mom a box to take to the table every am…{now she always gets it and no longer needs the box}. Living in assisted will never be perfect…it is not like being at home..BUT when mom kept missing her shower I went to the Director of Nursing and said “mom may be trying to skip showers…what can WE do to make sure she takes at least one per week?”…that WORKED..I did not say mom says they never come back to do it if I am too busy the first time they pop in.. take a deep breath before you complain..pick your battles…trust that they want your mom happy..it makes our work days so much nicer..really!

I live in assisted living and am l00% high functioning - just can't walk due to my spinal problem. I see and hear far too much here and it is often horrifying. What amazes me is that out of almost all residents, they complain among themselves, but not a single one goes to the proper person in management who can fix it. Why? Who knows? Fear? Background? Control? I am the only one in the entire building who will speak up when needed - I do it in a calm, professional way making the facts known, offer some suggestions, enlist their cooperation and inquire what and when will something be done. Then I follow it up in writing with copies to all concerned. I give them some time before following up but I do NOT go away until it is solved. On occasion I have had to call the ombudsman from the county in and very seldom asked the state for help. State the problem, suggest some solutions, ask for cooperation - never, ever be nasty or threatening - be a pro at all times. I think you will get some cooperation. Try it.

Hello Llama,
After my mom went in to the ICU and doctor came out and spoke to me about the severed artery I called the nurse in the ER that cared for my mom. I told him her artery was severed and she could have died and that he should not have worried about the cleaning her up delaying the transfer. He told me he found out about the artery.

Llama, yes same nurse and he was more concerned cleaning my mom up than getting her to the unit immediately. I stood out side her room and told everyone "my mom will die if you do not tranfer her to the ICU now." I was so upset my mom was going to die and so much blood and clots and nurse kept saying the monitor shows vitals are good. Can you imagine an RN saying that.I am still stressed to this day even typing this. Fortunately there was a good doctor in the ICU but he too was so stressed and did a very good job. Oh she was not scheduled for a biopsy just a sigmoidoscopy and she was on blood thinners. I was there in the room and told him not to do the biopsy because he did not take her off the blood thinners. He did the biopsy anyway while he was doing the sigmoid quickly. I told him she will bleed. I got a new doctor after that. My mother had him for 30 years.He was a good surgeon most of the years caring for my mom.

My mom was in the memory care unit of her AL and I complained for 7 months about them not following her care plan. Things I requested: Change brief when wet, 3 meals a day, hydration, and safety checks at night. They evicted her last month and stated in the letter that they could not meet the "families" needs. I have a camera in her room so I was seeing the continuous neglect and abuse. It is a very real situation to analyze when and how to complain or request care for loved one's in facilities. It is sad.

sandola: Imho, you must advocate for your mother because if you say nothing, everything is assumed to be status quo.

First Bring up the things you do and don't like up in a nice and friendly way to the actual person doing or not doing it not to a Supervisor.
Leave a huge note in her room of a couple things you want done.
See if you can install a camera in her room.
Visn't often at different times.

ALFs should be cooperative when confronted with issues, since they do not want residents moving out - their census determines everything - how many staff they can hire is directly affected by their census. I don't think people realize how desperate ALFs are to keep residents. You have power! I agree with those commentors that said to approach problem solving with management and staff as a team effort. Always be friendly, yet firm. Get to know everyone that works there from top to bottom, and you can also see where the problems are that way. And it wouldn't hurt to mention that you really want this to work bc you would prefer not to move your mom...just mentioning it puts the possibility in the air...

Pls note this comment is not in any way directed to the OP- it’s a observation I’ve made over the past several years related to this general issue
This brings up the issue of a deeper reality something many people have observed even here on the board that people should reflect on. It’s a sad reality that reading many posts here siblings who take care of their parent are too often demeaned, insulted, treated with contempt by other siblings who aren’t involved in the day to day. On the other hand ironically some feel the need to walk on eggshells when it comes to voicing legitimate concerns to a facility that charges an exorbitant amount of money to do these very things!
In an ideal world the siblings or other relatives who take care of a parent would be treated w a whole lot more appreciation and support.
When the facility is being paid ab exorbitant amount of money to take care of a loved one why should people feel hesitant or anxious to bring up a concern- ironically many of those same people will treat a relative who takes care of their parent with an abundance of criticism and hostility and even unnecessary contention, from what I’ve read on the board here in my time here.

Relates to some degree the correlation of those seniors who end up in an al bc the relative who’s graciously taken care of them eventually quits bc of the horrid treatment of some family members.

If you don't address issues, your mom still receives poorer care.

Rather than consider it "complaining", consider that you are a partner is "problem-solving." Bring up your concerns to the administration - verbally and in writing. Stress that overall you are happy with your mom's care, but you want to help in resolving a few concerns. Be specific about the concern, what you are willing to do to help, and that you would like an appointment to talk with somebody to help resolve the concern.

When a "concern" is addressed and it is better for your mom, please make sure to thank the staff and send a written note of thanks to the administration. Too often family only contacts staff and administration when there are problems. If you contact to "praise", your infrequent notes of concern may be addressed more quickly.

Pick your battles and walk softly. "How can we get mom to ....blah, blah, blah?"

I have no problem speaking up for the benefit of my mother. I certainly have in the past and have no regrets. I think they all brace themselves when I take my mom to the ER. I have reported quite a few staff members. Never the doctors because they were just fine and professional. One example my mom was bleeding profusely from her rectum after having a biopsy. She was putting out thick clots of blood, it was terrible and the nurse just kept cleaning her for transfer. I told the nurse she will die if she does not go the the ICU.He said her vitals were good. I told himI don't care about that.They took her immediately to ICU . The doctor came out white as a ghost and said the surgeon severed her artery. They let me sleep in the nexct bed in ICU that night.She then went to Mass General in Boston for a Sigmoid Colostomy. She survived. I called the nurse in the ER and told him about it and he said he know already and I reported this incident to administration. For the benefit of your mother speak up it could save her life some day as it did mine.

My answer is: it depends. Many laypeople who are not really familiar with assisted living or long-term care facility standards think that 8-10 thousand dollars a month should mean the client lives high on the hog, or should get every imaginable perk or high end items. This is simply not true. They all get the same food, the same bath schedule, the same level of care activity and therapy prescribed. I knew one family that thought they paid so much a month that the client should get special meals and be treated like a princess. So no, you can't squeak about prime rib or high end meals.
Unfortunately the prices for LTC are mostly personnel salary costs, benefits, Insurances, And regulatory fees.
If your LO is not getting bathed or dressed or physically cared for safely, then yes you can kindly, gently and considerately squeak. Choose how often and to whom you do this. The care providers have no authority. Only the RN or Director can change care plans with the team.
I would start by thanking them every day you are there. I would bring cookies or pizza each month with notes of thanks and appreciating kindness.
Then when you approach staff with needs and changes they are MUCH more likely to be helpful and kind in return. Squeaks need to be sweet kind and appreciative.
Complaining, grouchy , irritable sourpuss family will usually not get the help or consideration you want as the goal.
Remember honey attracts more bees than vinegar.

So...
Is there abuse or neglect such as laying in her own waste for hours, or being allowed to call out of a wheelchair then yes! Squeak.
If it's just preferences such as a bath on Tuesdays instead of Fridays type thing, feel free to ask politely for the change from the correct person with the right tone of voice.
God bless!

I was in a field (not related to this topic) where many people called me for help, complaints, etc….for their child. I would NEVER take out my feelings on the child based on my feelings of the caller. I tried to listen and help each caller, but even though I tried to suppress it, I found myself sometimes irritated with ones who called too often or only complained or treated me with disrespect. My suggestion is to always-always treat the AL people with respect - even in disagreement. Thank them for things you sincerely appreciate. Continue to be the voice for your loved one and expect the best for them, but remember the Golden Rule. Treat others how you would like to be treated.
Now if your AL mistreats your loved one because they don’t like you, that is BS! That is inexcusable! That person should not be working in this field. Report them. It makes me extremely mad just thinking about it.

You and your mom's nursing home are a team, so treat things as though you're a team member.

The most important thing to keep in mind is that if your concerns are preference-related, they don't know Mom as well as you do. It's your job to help them get to know her and those preferences.

When my mom moved in to her place we brought her in a transport chair because she couldn't walk the distance from the car to the building. However, she used a walker normally, but the staff thought she was wheelchair-bound. Sure enough, she got up to go to the bathroom, her walker was across the room and folder up, and she had her first-ever fall. She hit her head on her bedside table, was sent to the hospital, and ended up with 28 stitches.

Needless to say, this was not an auspicious beginning, but I realized it was an honest mistake. I had a meeting with the facility director, and we went over the very specific needs my mother had, and from that point on everything was great.

I also advocate putting everything you're concerned about in writing and asking that all the caregivers read it. I posted it in my mom's room, along with a short biography, so they knew what kind of person she was before dementia. I also sent it to the hospice company when the time came, because knowing the patient is so crucial to getting them personalized care.

It completely depends on what your complaints are.
IF she is not getting proper care SQUEAK away.
If she is not getting chocolate pudding and only green jello ((shudder)) I probably would not say anything.
If you find her in someone else's pants (but they are clean and dry) I would not say anything.
If you find her in her own clothing but it is soiled SQUEAK away.
Bottom line...Pick your battles.
If it is a violation of Minimum Standards that an inspector would look for I would complain. I would start with your States Department of Public Health. You can always ask questions and filling out a Freedom of Information form should give you a copy of the inspection reports.
There is also a rating on the Medicare website for different facilities and it will tell you what violations were found (and also sometimes an explanation)

It depends on the seriousness of your complaints, did you observe it yourself - or is your loved one with the complaint of sound mind?

Any care that is below par should be reported. 'What is the point of complaining" - to ensure that she is not neglected or abused by someone. Knowing someone is getting poor care in a facility is the same as turning your head and saying it's ok. You report it for the same reason people are expected to report poor care for any person or animal.

Choose your battles carefully. No sense bringing up every little thing that isn't handled the way you think it should be. Focus on matters that affect your mother's well being. Work through the chain of command at the facility. If it is part of a chain, work your way to the corporate office if you can't get satisfaction with the local staff. Does the facility have a council for residents and families. If so, attend, if possible. Talk to other families. Are they having similar issues. Work together, if possible. If all else fails, go to the state licensing board.

Document and Advocate, she needs you to stand up for her!

These places bank on your fear. You or your Mom are paying a hefty price to live in assisted living, you both deserve the services you pay for.

I can guarantee you that going with the flow will only let the situation worsen. Please keep a watchful eye and document every issue.

Dear Sandola,
My mother was Director of Nursing at a Skilled Nursing Facility for many years. We were all taught if in the future there was a problem where we observed a friend or family member not receiving proper care, First, ask to speak to the Floor Supervisor, if you don't get help there, go to the Director of Nursing, if the DON is not helpful or willing to take action, go to the State Ombudsman for Nursing Home Licensing. Most every state has an Ombudsman, or State Licensing Board where you can reach out for help.
I would make notes of the deficient care that is not being addressed, and names of people you addressed the issues with. Yes, there are poorly run facilities, but most States move pretty quickly when it comes to Elder Patients not receiving proper care. I hope this is helpful, and I wish the best for your LO who is not getting the care they need. I was diagnosed back in April with a declining state of ALZ, from Early Onset-Moderate and Severe Dementia, so I am very sensitive to this issue.
God Bless your LO, and yourself,
John

My dad was in a very good MC for a short time when he experienced 6 falls in about a 9 day period. I came unhinged, but like you didn’t want retaliation on him. There was also one nite aide who either wouldn’t or couldn’t change my dad so he woke up in a soaked bed smelling like pee. I called a meeting with the owner, director, RN and key players in the facility. I had typed up a Team Teg (Dad’s name) agenda. I began by thanking everyone & then explained there were some major concerns that we, as a team, needed brainstorm & address right away (with consistency). I used the Oreo approach: start with good, list the bad, then end with positive! I had some possible solutions listed, but we added others as the meeting progressed. Communication was ultimately our biggest problem. When all his staff were made aware of his needs he got two people transfers, they routinely sent someone in to change him, and my questions about meds were easily answered. Dad blew out his knee in the early mess which was very unfortunate, but his care dramatically improved. The director also knew I meant business and was documenting things. Dad got A-list treatment and we were able to keep a professional relationship. I will say that after lockdown with covid, things went to crud and we pulled my dad out! Worked beautifully for almost a year though! Good luck-

Sharing an experience: the director of the al my mom is in was a very congenial helpful young man. I had a problem with one of the nurses giving my mom medication and our ability to communicate with each other. I talked to the director about it. The timing was not great. A large number of employees at the al refused to get vaccinated and he was forced to fire them. He was left without enough help and the other employees were not pitching in. He had to end up practically doing everyone else’s job on top of his own. It was too much and he resigned. Now I feel guilty adding to the burdens. But at the time I was furious because they were getting $400 a month to make sure my mom got her daily meds and this one particular nurse was fighting with me and giving me false information. But now that the staff has changed over this nurse is still there and she is as nice as can be. So I wonder if the nice director was actually abusive towards the staff.

Would you want to move her if you could? How serious are these concerns?

The kind of aides who are so spiteful that they would treat a resident worse because they resent her relative's interference are going to be spiteful anyway. You'd better just hope the staff aren't infested with any of these vermin.

But assuming that at least some of your concerns are about everyday preferences and personal routines, by not raising them you are expecting the staff to be mind-readers. Say, for example, they've been making her bed a particular way for a month, and neither of you has told them that it annoys the bejasus out of her when the top sheet isn't tucked in. You don't like to say? - then how do you expect them to know?

If you are unable to discuss an issue with the director without fear of retaliation, it’s time to figure out how to move her to a better place or find an ombudsman of some sort.

Well, I think it depends on how serious the matter(s) may be. It also depends whether or not your “squeal” will resolve your concern(s) and produce results. Otherwise can you just set or show a good example by demonstrating that a change in method or procedure would be helpful to the staff?

Yes, approach is as a question. If its aide related, then the RN can be talked to. What kind of things are you questioning?

I agree with GardenArtist... you are asking admin to help you problem solve something together. It matters how to say it to them. My preference is to communicate it in email form (and always copy someone else who may be appropriate to receive your email). Writing prevents the "discussion" from devolving into emotional territory because you can edit it AND it gives you a "paper trail" that you can point to with an ombudsman if your concerns go unaddressed. Confirm in the email that they are the appropriate person to speak to about your concern.

My personal philosophy is to never complain unless I can offer at least 1 realistic solution. At the very least this will provide a springboard to other ideas for solving the problem, whatever it is, and shows you've given it thought so are not really "complaining" but looking for feedback. Make sure to end the email complimenting them on what they are doing right. It is diplomacy and a little positive reinforcement goes a long way. You are your LO's advocate and it's an important responsibility. Be confident in this role.

If your concerns are related to safety or actual physical care, you can ask questions in a calm, specific, nonaggressive manner and expect specific answers.

If you are concerned about non essentials, it’s probably not worth your time.

If you want, let us know what has concerned you up until now. I asked a caregiver yesterday about what I thought was a bruise on my LO’s head (it wasn’t).

I showed the caregiver what I was talking about, and notified her after I realized it wasn’t actually a bruise.

Communication is really important. If you can communicate in a calm pleasant way, your LO will benefit.