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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.
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JoAnn29 Nov 2020
Facilities may have in admission papers that they are not responsible for lost items.
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Sadly, what you describe is not covid related. Trying to reach people on the phone or any kind of communication with staff in those facilities works pretty much as you describe long before the covid 19 virus came around. You may not have dealt with it much if you were visiting because you could locate someone and discuss the problem. AND you were seeing your dad and could usually sort out if the problem is just dementia or if it's something they need to do to help him.

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?!!)
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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.
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You have been asked to give examples, of what Dad is telling you, but have not been back.

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?
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I can’t seem to find specific issues in your description of your dad’s care.

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.
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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.
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Your father has dementia. I actually need an example from you of one of these incidents he brought to you. Then I can judge if there IS an answer to it. Because many things with the demented comes down to their story and the story of those caring for them who do NOT have dementia.
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.
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jacobsonbob Nov 2020
AlvaDeer--Did you ever get a private message from Annabox? Apparently she hasn't come back to the forum to give additional/specific details, in spite of several others' also having asked for them.
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What issues about your father concern you? What are your specific expectations of the facility? You say he's in a 5 star facility. What does that mean? Who did the rating? LTC facilities aren't scrutinized like nursing homes are. Medicare/Medicaid doesn't audit self pay LTC facilities. Anyway, from what you say, I agree the communications should be 10X better than what they are. Maybe that's not a criteria for their rating. He initially went into the facility with mild dementia 2 yrs ago. How much have his symptoms advanced? Many of your concerns may be the cause of his advancement. I'm not saying your concerns aren't justified and shouldn't be better addressed, I'm just commenting on your post as an 3rd party outsider.

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.
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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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Mysteryshopper Nov 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.
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