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.

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Should you settle for anything less than professionalism?

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.
Helpful Answer (10)
Reply to Countrymouse

Yes you should expect proffesionalism. Your Father is paying for it. I assume you are legal guardian and or Power of Attorney so the facility sees you as a person of Authority?

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
Helpful Answer (6)
Reply to lacyisland

Dear Annabox,
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.
Helpful Answer (6)
Reply to jfbctc
RedVanAnnie Nov 20, 2020
What good and specific advice. Thank you from all of us who need to know these things.
Hello Annabox,
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.
Helpful Answer (5)
Reply to earlybird

Need some actual examples of the issues you're having. You vaguely mention things going missing. Seniors lose their stuff all the time in these facilities, and there is largely nothing the staff can do about it. They're not responsible for personal effects generally.

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.
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Reply to ZippyZee

These facilities are far from perfect, but "assisting" 200 or 300 people who have physical and mental disabilities 24/7 is a monumental task.  Prior to Covid, when I could actually go into my mom's assisted living apartment, if she complained of things missing, I always found them hidden somewhere obscure.  Even found out she was hiding her shoes in her friends apartment down the hall.  If you focus on those types of details, you will drive yourself to insanity.  Now that we are in covid madness, it is a sh** show in these facilities and they are doing the best they can.  I used to do moms laundry because I would have to hunt for her dirty clothes...under the mattress, in drawers, in couch cushions, rehung in the closet etc. I would haul it to my house to wash and dry during the night and take it back the next day and put it away.  Now that I can't get into the facility, they maintain it. (if you want to call it that).  I drop off the detergent and softener.  When they call and say she is out of detergent and I know I just dropped of a pack of 48 tide pods two days ago, I just tell them they are going to have to find them. Either they have put it in the wrong apartment or mom has hidden the tide under her bed or something.  I just have to let it go.  I know she is getting her meds, she is being fed and she has a roof over her head.  I can't dwell on the rest...its too much and that lack of control is so upsetting.  I suggest you find some way to look at the positive.  Your only option is to pull him out of assisted living and take on all of his care yourself.  I know I certainly can't and don't want to do that myself with my mom so I choose to be thankful she has somewhere to be.

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.
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Reply to Jamesj

No you shouldn't settle for anything less than professionalism when looking for an answer. And bless you for being such a good advocate for your father. He's very lucky to have you.
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.
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Reply to funkygrandma59
Mysteryshopper Nov 18, 2020
Thanks for mentioning this. I agree completely that the care conference is a great opportunity. I just had one today and felt so good afterwards. The staff who were on the call (and there were several: dietary, restorative therapy, social work, activities, etc) all knew my LO on a personal level and demonstrated that they sincerely DID actually know what was going on. It wasn't just a bunch of happy rubber-stamp stuff to make the family feel OK. It was an informative give and take session. In addition, they gave me their perspective on an ongoing (minor) problem and their version made perfect sense such that I feel I now understand the situation and I'm able to relay to others what is really happening. It was a good discussion and I highly recommend this approach.
Do you know anyone who works or has worked in this kind of facility? My daughter has and I relied on her to tell me what I should question and what to let go. Dressing Mom was one thing. Many times she was without a bra which she needed to wear because of a skin to skin rash she would break out in. Easier to prevent than cure. My DD asked me where did I put the bras, I said in the same drawer as the socks. That was the problem. Aides dress from the top down. They didn't see the bras till they got to the socks. So, I started putting the bras with her outfits. No problem after that.

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.
Helpful Answer (4)
Reply to JoAnn29

I hear you. Your father has dementia and some of his problems are the result of his disease process. But, every problem is not the result of his disease process.

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.
Helpful Answer (4)
Reply to Taarna
JoAnn29 Nov 18, 2020
Facilities may have in admission papers that they are not responsible for lost items.
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I moved my dad one month ago to Assisted Living memory care. Private pay.
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 😊
Helpful Answer (4)
Reply to THretired
InFamilyService Nov 20, 2020
Keep loving your poor Daddy. He knows you are trying to do everything to take care of him. I also recommend private sitters and hospice. Some churches are well known for help with private sitters and are less expensive than an agency. Reach out to any Jehovah Witnesses in your area. They will assist in finding help. I am not of this faith but my mom, dad and aunt have all benefited from their loving care.
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