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.
Family who can't visit and check on how things are going from first hand observations;
Staff that are exhausted, low-paid, considered about their own health and safety and that of their family when they go home;
Residents/patients in facilities that are confused, alone / lonely.
Not a good time for anyone.
1. You need to reach other people than whoever you are emailing.
- find out who is on the Board of Directors, call or write them.
- call county senior services or Ombudsmen service / non-profit
2. You want to be careful due to Covid.
3. How is it that you believe your dad since he has dementia? If he is being abused, definitely pursue legal investigation. If he says he's losing 'things' - realize it is just things.
4. If you have any concerns about the quality of care, check into it although also be aware that if they ask him to leave, Covid is a concern everywhere.
5. If I were you, I would stop knocking my head against a wall. Find another way 'in' to getting your concerns answered.
6. Don't forget to take care of yourself - this is vitally important. Gena
- call an elder attorney lawyer
my mom was in a rehab in 2019. They had staffing issues, cleanliness and medical treatment (or lack there of) I addressed through the facility, but it never was addressed through all shifts.
you need to see if there is an ombudsman in your area, report to state, report to Medicare, etc.
you have a right to be a squeaky wheel.
inwas one at this facility. Medicare actually did an inspection in the beginning of 2020. Guess what? They basically failed the inspection. Many of the cleanliness issues I had seen. Like patients can’t have a wash rag after 9:00 if there is a spill. Lack of washing hands, etc.
one month or so later the pandemic hit. Over 40% of the patients were dead and something like 60%plus were infected.
our loved ones deserve and need squeaky wheels.
I believe if theyre getting paid for a service.
They need to explain your concerns.
Maybe, A wake up call of .. well, If you can't answer my question I need to look into
other housing for my LOVED one.. might work, might not ?
A little play there game B.S... and if your not standing right there when something happens
to see for yourself. it very well be Dementia ?
Best of luck , We are all in this together .. PATRICK
Understanding the 5-finger discounts can make missing items understandable. Mom's Boogie Board (LCD tablet to make communication a bit easier due to her hearing loss) disappeared for a while, then reappeared. Clearly someone walked off with it, but eventually they located it and returned it. The hearing aid she moved in with eventually went through the laundry. Could they have been better about checking her linens when washing them? Sure. The first replacement (bought a pair, both set up for the left as she only used one) went AWOL within a few months. Problem was she kept taking it out and in the past I know she would wrap it in a tissue or napkin. Most likely it was tossed at mealtime. With the remaining one, they kept taking it away from her when she'd take it out. As far as I know it's still there, but probably not used much. I have arrived for visits and saw her wearing clothing I'd never seen before - more than likely this was someone else's items that got mixed into hers (this despite being told her laundry was washed separately. Some of the undies found in her drawer (before we switched to briefs) certainly weren't hers (she only wore cotton, these were the "stretchy type", something she never wore!) She never complained about anything and I never saw anything to complain about (excluding the missing/lost items, which goes with the territory.) She was never set up with a phone, as she really couldn't use it or hear well with it, but I was there often enough, various times of the day and knowing my mother, she would b*tch about anything she didn't like!!!
I have no idea how many stars my mother's facility has, and generally don't base my thoughts on those. We have no idea who posted the rave or bad reviews or why. They had torn down the really old buildings and rebuilt it all, so we didn't have a full view of it until they opened. MC was the last unit to take residents, and mom was the first. Due to lockdown, there's no way to know what's going on at the moment, but in the 3+ years she was there and I could visit, I had no complaints. There are many care-givers there who adore my mother and always tell me things she says and does and comment on how "cute" it is. Mom's facility is 3 level, IL, AL and MC. It is private pay, non-profit. While it is not cheap, I can also say that those who do the actual care are among the lowest paid employees. I would never assume any of them are "in it for the money."
Anyway, Annabox, if you could cite some examples of your (dad's) concerns, it would be easier for us to make suggestions that make sense.
Note: Make sure you turn your wrath on the right people. If the actual caregivers are working hard and doing the right thing, find a way to recognize and reward them. They are doing a thankless job. I know you cannot visit. That has to be horrible. If there is any way to get him out, I would seriously consider that.
Good luck! You can do this.
it nauseates me how deceiving the front office is to achieve the goal of an income.
I once plunged a dementia gentleman’s toilet on a Saturday- with no maintenance on staff - and management was not happy! LOL. He was not going to remember to NOT use the toilet! I worked in the kitchen and went above and beyond changing light bulbs, carrying groceries, switching pictures for residents, conversations, hand on shoulder reassurances— I feel it matters not what department one works in. We are at a facility to help, Nuture, love, guide, give friendship and love to the residences. They deserve the very best of care.
I actually picked a gentleman up at a local hotel at 6am one morning when he wandered away. Talk about uneasiness with management. IMO- money is their only concern and boy do they know how to turn on the charm when needed.
i have done private caregiving and the inept care for some greatly saddens me.
ive told my husband to never put me in a home. I’d rather be deceased.
some residents can be mean- as if it is cliques of high school all over again.
so- enough of my poor viewpoint. In reality- who knows what my future holds.
**I would demand to speak to the owner. Document everything. Date, time and to whom you’ve spoken with to
**does caregiving have a manager to seek out. Ask for an in person meeting- possibly zoom right now
**if you can befriend a caregiver - cleaning staff member - kitchen staff person- they can be a direct, honest person to give you first hand details of your dad. You’ll know when you meet that person when you have that gut feeling that they genuinely care. I would relay the meals eaten, how social they were, mood.... give a staff member you trust a small token. A card is more than enough elaborating on how much you appreciate them!
**contact the local health department
**contact the local senior center and see if they have a mentor / friend program to visit your dad
**contact the local high school counseling office and see if they can recommend a student to help
**contact local colleges, university’s to see about student social workers, nursing/ medical students.
**contact a local caregiving agency- they may have direct knowledge of the care facility your dad is in and can make Recommendations too.
many blessings!
if I think of more resources- I’ll let you know.
Listen to your heart and concerns. Hopefully it's a very serious issue.
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.
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.
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.
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 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.
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!
Thank you for and your post. I have no answers but hope that someone’s response will help us both.🙏🏻💜
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.
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.
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.
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