My father has been living in a LTC facility for almost 2 years now. When he went in, he had some medical issues and slight dementia. Most of the medical issues are under control, but the dementia (unfortunately) is still there, and for the sake of this post - my main focus. Most of the time dad is pleasant and quite lucid. When something goes wrong, goes missing, or just isn’t right, he reaches out to me. I haven’t been able to go inside recently, so I call or email to try and address it with the facility. Usually this is a lengthy process. If I speak to someone, they say they’ll check and get back to me, and it goes into a black hole. If I email, days go by with no response (the black hole again). If I push and push to try to get to the bottom is something, their reply makes no sense. They always twist the story and blame it on dads dementia.
I can honestly say that I try to be advocate for dad. He only has me in his life, so although I try not to be a squeaky wheel, I think that’s what I must look like. Dads facility is 5 star. It’s beautiful and I used to think there were many nice, capable, employees there. But I’m starting to think that maybe I’ve been looking through rose colored glasses. 99% of the time, my issues concerning dads care are valid (not everyone who works in a LTC facility is there because they love the elderly, and some are not as responsive, compassionate and kind as I thought). When I call to investigate an issue, I’m put off. When I squeak my wheels, I’m looked at as a pain - and their response is always so vague or if they just want to dismiss me, they say it’s the dementia. I KNOW DAD HAS DEMENTIA. IM OK WITH IT. But dad also is a human being. He has emotions just like anyone else, and when something is wrong, I expect to figure out why it happened. I hate to say this (because truth be told, they know and I know that moving dad would be a nightmare) but I’m speaking on deaf ears when I reach out to them for help. I’ve spoke to the administrator (who is very nice, but has no clue what’s going on day to day), I’ve spoke to the patient Liason (horrible - she just tries to use her finesse to convince me they’re right and dad is wrong), and I’ve spoke to the Director of nursing (let me rephrase, I had to literally send multiple emails, of which she made me wait days for a response). I promise, I’m not a squeaky wheel. I’m just a daughter who loves her father. I promised to be his advocate, and that’s what I’m trying to do. He pays a lot of money to be there. Should I settle for anything less than professionalism when I’m looking for an answer? How do I find someone I can trust and not just try to cover up a “whoops”. Is there anyone who works in these places who is a true advocate for the residents? I’m sick and tired of everything being blamed on dementia.
Does his LTC facility not have monthly "care plan" meetings with the family(you)? It would be at those meetings that I would bring up all of my concerns, and share with them what you expect, and then listen to what they have to say about your concerns. I will also remind you that you will "catch more flies with honey than vinegar," so make sure when you are contacting them in any way that you are letting them know how much you appreciate the care your father is receiving, before you bombard them with any complaints/issues. Maybe that will help in getting the responses you desire. Best wishes.
As far as being an advocate for your dad, certainly, you should be. That responsibility doesn't end just because he's in an LTC facility. As his advocate you have a right to know how he's treated, what his meds are, his care plan, etc., especially if you have his healthcare POA. I applaud your advocacy. I recall when my wife was in MC, most of the other residences seldom got a visit or even a call from their family.
LTC staff training is a real problem. There is a huge turnover of direct care staff and when new hires start, the training is insufficient and hardly ever person centered and competency based. Rather than look at the environment or how often a resident is showered, most importantly this “5 star” rating should be based on how well the staff relates to the residents. Many states are legislatively addressing these issues.
I hope you start getting a better response from them.
My brother was in LTC. I will tell you a long story about what happened to me, to him, when I took his word (almost always very rational) over the caregivers; too long to relate here. A terrific lesson to us both.
You cannot imagine right now what it is in these facilities, how hard they are trying to keep Covid out. How much more fraught and taxed their elders are with the isolation. How unable to do the things they used to do to keep them even a bit entertained.
As a nurse, yes I cared about my patients. My best friend is DON at a huge elder care complex with many levels after being in Hospice her whole career. She loves it and the people she cares for. Is every person perfect? Nope, neither is every person in the elder's family perfect.
Again, for me, an example would help. Such as "Dad called and said this........I called and they told me........." . I would know more what you are describing. We have responders on Forum who have very unhappy LTC facility experiences. My own, and my brothers who was in care, was stellar. So it varies.
Wishing you good luck. Reach out on private messaging if you would like me to share my bro's story, and mine.
Things go missing in the best nursing homes. Another resident walks into the room and takes something. The resident has Dementia and places the thing in a different place (I do this) and can't remember where they put it. Or...they never had it to begin with. I know that my DDs facility took a missing cell phone seriously. They made a report and started investigating. Sometimes finding a family member took it.
Sorry, the best place is not going to care for Dad the way that you would. Yes, they maybe using Dementia as an excuse but more times than not it is the dementia. Their world has become very small especially now. Their reality now includes TV and dreams. They can no longer differentiate between what is real and what is TV and a dream.
You are entitled to care meeting. Where I live its every 9Odays. The problem was, for me, they were about 15 min and more the staff talking about what they did then allowing questions. Contact the Social Worker. Tell her you have contacted those in charge but probably because of COVID they can't get back to u in a timely manner or at all. Ask if you can have a zoom meeting based on what Dad has been telling you. Right now thats all you can do. Do this with sugar not vinegar.
My Mom declined monthly. She had been in Adult Daycare just before I placed her in an AL. Shortly after she was in the AL an aide was hired. Was one of the aides from the Daycare. She was surprised how Mom had declined in those few months.
It may help if besides missing things, you can tell us some of the things Dad has said that you feel you need an answer for that the staff is glossing over.
The situation in THE BEST of facilities while dealing with the needs of their residents and the added responsibilities resulting from the Covid crisis, are difficult to fathom.
Being the family member of an LO who has survived Covid, and whose life has been tossed upside down, I have nothing but sympathy for your situation. I truly understand what you are saying.
None of us REALLY know what is happening right now in residential care centers. I had the enormous good luck to have about a dozen outdoor visits before my LO’s residence locked down for the second time.
You care deeply for your dad, and that is a wonderful thing. I care deeply for my LO. If I were to have a specific situation regarding her care, and the situation had a fairly comprehensible solution, I’d have no hesitation reporting it. If, on the other hand, I realized that my LO was upset about something that was manageable at the resident/staff level, I’d be confident that the are staff was doing the very best they could, and let it go.
”Professionalism” is a spectrum during reasonable times. These times are by no means reasonable. If his need for SAFETY is met, if his basic needs for FOOD, assistance with SELF CARE, and other basic amenities are addressed, could considering that help you establish priorities that might evoke more prompt responses? Are you able to access his hands on caregivers by phone? It has been helpful and a real release from anxiety for myself, since I’ve been able to do so.
My mother’s life in residential care was much less stressful than the LO’s care for whom I am responsible now. Tragically, part of the difference is Covid, and where I am, Covid concerns impact everything else.
Your statement “...she made me wait...” was a little concerning to me in respect to my own reaction to waiting for responses to my questions. I know my LO’s caregivers so well that I worry about THEIR welfare as much as LO’s. Maybe I’m wrong, but I know how good all of them were before Covid hit.......neither you nor I really know right now exactly what’s happening, but we DO know that our LO’s are more stressed than we’d like, miss the face to face contacts we could bring them before, and long for the end to this horror.
None of us can do more than our best, however desperately we wish we could.
Dad has dementia, this means his reality is not your reality. You did mention things going missing. You can find a great many posts here from people talking about their family member with dementia losing their teeth, hearing aids, glasses and more. Mum had a friend accuse her of stealing a jeweled cross. E called several times throughout the night because she could not find it. Mum went over the next day, did a bit of searching and found it. E. had put it in safe keeping.
There have been several posts lately about two sides of the same coin, getting an elder to eat, but they think they just ate, or convincing the elder that they have eaten already.
If you contact the facility with a concern, what do you feel is a reasonable amount of time for them to investigate it and get back to you? The staff involved may be off for a few days, or work nights.
You said"...cover up a “whoops”. What is the whoops you are talking about?
I would not worry about being a pain. You are your dads advocate. I am sure some health care professionals think I am a pain in the neck, but I really don't care. I will make sure my mom gets the care she deserves. I would go to the top if I had to and have done that to get myself heard in the best interest of my mother. I would not settle for anything less than professionalism. I agree the health care system does blame everything on dementia and in my opinion also on Covid which is a bunch of bull. I spoke up to doctors and nurses when my mother was serious ill in the ER and if I didn't she probably would have died. Continue to speak up and be there for your dad, keep going to the very top if you feel the need until you get some action. There is another option I would look into another facility if it is not a good fit for your dad. Good luck.
Keep squeakin', sista! That's the only way you're going to get their attention and they will realize you happen to be one of the relatives that actually has concern. (Doesn't this give you a whole new insight into patient care for those who have no one to speak up for them?!!)
Start keeping a journal of when your father reaches out to you: date, time, and complaint. Also not when the complaint is forwarded to the LTC facility: date, time, method of communication, and whom you addressed issue to. Lastly, note the response: date, time, and what you were told. Lost items should be found or replaced - and they should pay for replacements. Difficulties with other people should be investigated and you should find out both sides of the story - not "that he has dementia."
Soon you will be able to notice patterns. If he calls in the evening agitated, it may be Sundowner's Syndrome. If he is complaining a lot about lost items, he may need fewer items in LTC and they should report when they find or replace items. You will discover who is "the right person to talk to" since he/she is more responsive and you get better feedback from him/her. It is hard to get what seems like "half a story" all the time without a good ending.
Please be patient since COVID-19 is still a huge concern. As long as your father is safe and healthy, he is being well cared for. If you suspect he is not safe or being kept healthy, then consider a new placement.
Moving him is no guarantee the next place will be any better. As far as who you should trust? It sounds like you listed the people you should be able to trust.
I suggest
1) Find teh Cou8nty Senior support organization in your area. THey will have counselers that can help you. Run all this by them and ask them what they suggest.
2) Have a sit down with the most Sr executive at teh facility and have a candid conversation. tell them you percieve your not being taken seriously etc. ASk them for guidance as to whst they think youu should be doing differently And ask for their support. Take good notes follow up with an email outlining the go forward agreements.
3) If your not doing it take detailed notes of the issues your dealing with and problems/solutions. include date time who you spoke to. I suggest following with an email. If you begin to create a papertrail theey will see this and hopefully they will start doing what they are supposed to. Unfortunatly this could cause retaliation against your Father when your not there so you will have to judge the situation.
4) read the whole agreement you signed so your clear on the terms and conditions
5) Consult with an attorney just in case things do not improve
6) As a back up shop around for a different location. But these places are all full so it is not like changing hotels on vacation.
7) check the state laws as to how they are supposed to conduct themselves
Good luck
With dementia he's not living in reality anymore, so you can't believe everything he tells you. Being unable to visit due to COVID makes this harder. Elders almost always complain about their living situations regardless of how nice it is (complaining about the food is the biggest one).
If you're constantly calling, emailing, and Karening over nothing you may end up in a "crying wolf" situation if something serious happens.
The reflex answer is no, of course not. Staff in a facility or out in the community are professionals and you have every right to expect professional standards and a professional response to any concerns you raise.
I can't really explore your concerns, though, because as everyone is pointing out you haven't gone into any specifics. So we don't know whether you're "squeaking" about a member of staff speaking impatiently to your father, or a lost hearing aid that is probably as we type down the back of his armchair cushions.
By the way, I echoed your use of the squeaky wheel metaphor because I not only don't think it's wrong, I actively encourage clients and their primary caregivers to be one! People who squeak are helpful, they identify problems which are often common but overlooked.
It sounds as though you feel very tired of being fobbed off or dismissed altogether, but I wonder if this might help - when you raise a concern, make a complaint or ask about an incident, be clear as to what you expect to be done about it.
For example, just supposing - Dad tells you he pressed his call button during the night and then had to wait hours for someone to come and help him to the bathroom. And you, very naturally, want to get to the bottom of this. What happened, why, and how can problems be avoided in future?
Did he press his call button?
Was it hours?
Let's say he did press it (the call is listed on the system) and although it wasn't hours (the call was answered after 17 minutes) it was over the guidelines.
The manager will then need to know who was on duty, and ask that person or that team to explain why Mr X was kept waiting longer than the standard response time.
The explanation is likely to be that the staff were dealing with other clients at the crucial moment. When that happens, best practice recommends that a worker answers the call and explains to Mr X that they will be with him as soon as possible; but best practice recommendations don't always take account of practical realities, such as there being literally nobody available to do that.
So the answer very often boils down to upping the staff:resident ratio. Simple! But not so simple when a facility is already struggling to fill vacancies and then has four members of staff going into self-isolation on one day.
And then, just taking this as a case study, what would you expect the facility to say to you beyond that they will do their best to answer calls within time limits?
I do NOT mean that you should just roll with everything and not continue to be your father's advocate, not at all. But do be selective about what really needs attention now, and what can wait until the next review (if you don't already schedule reviews, do think about it - it's a good way of fine-tuning care to address any recurrent issues).
I hesitate to mention Covid because we're all truly sick of hearing about it, but I promise you everyone I meet in health and social care is paddling as fast as he or she can.
they can really help. If the local doesn’t do what you need go up the chain of command. This is their job and most often can be very helpful.
if that does not work the office for the elderly. The facility is not meeting your or your dads needs. Follow chain of command until needs are met. Up to and including Department of Health.
Thank you for and your post. I have no answers but hope that someone’s response will help us both.🙏🏻💜
If there's no other way and your Dad has to Live there then I would have a Camera installed in your Dad's Room where you can watch him any time from your Computer or Cell phone 24 7.
There are some nice Caregivers but plenty that just don't treat the person right and shows no respect and some that won't even talk to you but then that's better than the actual mean ones that treat you bad mentally and physically.
If your Dad can't move in with you and get a Caregiver, Please install a camera in Dad's Room and if they won't let you, MOVE YOUR DAD!
You did not mention safety concerns or abuse or anything of that nature. Those are totally different situations that require you to shout from the rooftops for resolution. I was only responding to the superficial things like dad says his razors have been stolen or he can't find the remote to his tv.
I know it's upsetting and I am not trying to make light of your anger about this. It took me a while to get here.
Praying for you and your father.
Lock down area with about 14 residents.
He could barely walk but could if he used a walker which had to be place in front of him constantly. He fell twice the first week and vomited and got a black eye.
He fell twice the second week
requiring 3 staples in the back of his head. And the final time he broke his arm.
He does not walk now.
Place on hospice to manage his pain and dementia
Hospice offers extra care. His own CNA for bathing and feeding
I go about every other day to visit him. I have a Blink camera in his room. I can see him and any activity. Some days he sleeps til lunch. Others he is up about 10. He has a bath every other day. He is changed about 4:30 am morning. I can see them peek in to check on him. But one day no one checked on him from 7pm til 4:30 am. But the next day they did.
One day he was in his wheelchair all day slumped over. The next day in bed all day. I am keeping open communication with the head of hospice. I am 66 years old and I am my dads voice
I am kind but ask why this or that is happening. I ask why one person tells me one thing another something else. I ask about the meds and make sure when they are given.
If you can, show up and plan to spend a day with your dad.
I report if my dad was having a good or bad day to hospice.
He was so dopey one time that he fell asleep eating.
I made sure the admin knows.
We are working together for the best treatment of my dad.
As far as the attendants. I thank them constantly for their care. Tell them they have a gift of care. I ask for help if I need it for my dad. I treat all with respect. I bring the cookies. I had him at home with around the clock care until he started to wander. That’s when I moved him to memory care. Some days I cry. Other days are good. I take 24 at a time and start over the next day. We love our dads. They love us. Keep on speaking up for him. Check on hospice care. It does not mean that he is dying. Just extra care.
Hire a sitter for a few hours
in the afternoon if they allow.
Pray for Gods help and trust God to care for your dad. After all we are God’s children. And he cares for us more than we know. Blessings 😊
You do not need a doctor's order to request Hospice. Anyone can make the referral. They would send someone to evaluate and speak at length to you. I would start there. If for some reason, they do not accept Dad under care, go to the Federal and State agencies and Ombudsman. Their lack of transparency is disturbing.
Best of all outcomes for you and for Dad.
I am a patient diagnosed with Early Onset ALZ four and a half years ago one month before my 57th Birthday. My mother was Director of Nursing for a Skilled Nursing Facility for many years. We were taken there to visit on holidays but my mother made it her mission to educate us on the rights Patients have in hospitals, nursing home etc. We were told, first speak to the floor Nursing Supervisor, if you receive no action, Next stop is Director of Nursing, next stop would be Administrator. Should you still not receive assistance go to the State Health Dept. that has Jurisdiction over the the Facility.
Yes, it is necessary to advocate for your father, and don't be afraid to hold them accountable. When the State gets involved, results tend to be produced. I wish your father the best on his journey and thank you for looking out for him. We patients, can at times, become confused and not know what to do. Hang in there. I'll be sending up prayers for you and your dad.
Most nursing homes don't have staff to even adequately handle the most basic things like hygiene, feeding, dressing, and toileting. No nursing home has staff whose job it is to humor residents. They don't have staff who will spend hours investigating and searching for some resident's item that went missing or they think went missing. Nursing homes do not employ staff to listen to some resident complain and rant out of boredom. No facility offers this and it's not unprofessional if you don't find it at one. The only time this is included as part of elder care, is if you're hiring extremely patient in-home, private caregivers that you're paying big money for. This is not what you get in a long-term care facility. Nursing homes don't take this seriously and will politely dismiss you when you communicate with them about it. You could hire private people to go and sit with your father at the facility during the days you can't visit if it's allowed. I know people who have done this and it helped their loved one greatly. You know your father well enough to know if something real and serious was going on. Then you could act on his behalf. The staff of the facility he's in also knows this.
Listen to your heart and concerns. Hopefully it's a very serious issue.